The Leukemia & Lymphoma Society Community : Popular Threads - LLS Blood Cancer Discussion Boards

Living with PV AND ET..our new home

skootch11@verizon.net — Fri, 03 Apr 2009 16:37:00 GMT

I would like to start out by posting were we left off when Mimi took down the mail box lol..This is going to be differant to veiw i,m sure... to much for me already i over did it this am and now paying .. i wish everyone a great weekend tata

WBC, Neutrophils and Platelets dropping post March 11th SCT

communityreply@lls.org — Fri, 12 Jun 2009 00:26:53 GMT

Hi everyone. I haven't been here in a long, long time. The boards are so different. It is taking me some time to get used to the new format.

My mom had her SCT on March 11th and had been doing very well up until a few weeks ago when her counts started dropping. As of Monday, her WBC was 1.68, her Neutrophils were 66 and her platelets were 93,000. She saw the doctor again yesterday and her counts had dropped some more (I don't have those numbers). He told her that there are no leukemia cells in her smears but that he wanted a bone marrow biopsy done. She had that this morning (she is being treated at the Cleveland Clinic) and we won't have any information until (at the earliest) Friday but most likely next week. He ordered all kinds of tests so the results will come in at different times.

I am wondering if anyone knows what would cause this to happen? Her 100 day mark is June 19th. She has had some slight GVHD - mostly diarrhea but nothing serious. Could the dropping counts be the signs of a relapse? She had no cancer cells when she had the SCT in March.

Thanks in advance for any help or information anyone can give me.

Polly

I recently completed

kreble@sbcglobal.net — Tue, 18 Aug 2009 21:26:16 GMT

A SIX SESSION CHEMO (ONE SESSION EVERY THIRD WEEK) HAD MY FOURTH PET SCAN AND AM NOW IN A STAGE WHERE THE TUMORS

ON MY SPINE ARE GONE, AND WILL HAVE TO BE SCANNED EVERY THREE MONTHS FOR A YEAR. WHILE I AM SO VERY HAPPY WITH THIS

I JUST HELD A DEATH WATCH FOR MY MOTHER WHO HAD BREAST CANCER. WHILE I KNEW SHE WAS QUITE ILL, I DID NOT EXPECT HER

TO GO GO SOON, AND THE EMOTIONAL TOLL WAS GREAT. MY QUESTION TO WHOMEVER READS THIS AND HAS ANY INFORMATION IS

IS IT NORMAL TO GET THIS GREAT INFORMATION THREE WEEKS AGO YET BE FRIGHTENED OF EVERY ACHE AND PAIN AND ITCH, ETC.

I AM FIGHTING TO GET THROUGH THIS EMOTIONAL ISSUE WITH MY MOTHER AND SEEM TO BE SCARED ALL THE TIME. THANKS IN

ADVANCE FOR ANY HELP SENT MY WAY.

Help to get through it

communityreply@lls.org — Tue, 08 Sep 2009 20:14:59 GMT

January 4, 2007 was Burt's first bone marrow test, and the day I will always remember as the one when our world turned upside down, it was also Burt's 64th birthday. We learned a lot that month but the cliff notes version is he had CMML. I jumped on the message boards here and learned as much as I possibly could about what we would face. The support, advice and hope that poured out was amazing. After two and a half years of bliss, we almost forgot there was anything wrong. That was until August 17th and we got the word that once again, our world was being shaken at its roots. The disease had progressed, blast count was high and Burt had a week to get his stuff together and check-in to the hospital. So, Monday, August 24th at 8:00am there we were at the hospital.

That first day was long and scary. Burt had never been in a hospital for anything. They did a lot of things, we did a lot of waiting and at 10:00pm he finally got a PICC line, he needed his first ever transfusion of platelets before they could insert it.The plan is to have a stem cell transplant as his sister is a match and Burt is healthy in every other way. He is to do a chemo protocol to get the leukemia into remission, will go home for a short time and return for 8 days of chemo, a rest day and then transplant.

The road has been fairly normal (under the circumstances). He had a week of chemo (area-C and idarubicin) and after a week of letting his body rebuild they did another bone marrow test today. He's moving through it like a champ, hardly neuseous, did have the requisite fever, but generally doing really well. We've done the caring bridge thing because it's helpful to let friends and family know what we want them to without having to rehash it over and over. The support from friends and family has been overwhelming and we are grateful beyond words. We're also concerned and reaching out and looking for support here for many of the questions and concerns we don't want to share with friends and family (please don't take that the wrong way but it' sometimes easier to share with anonymity).

The lastest blood work shows 13% blasts (up from 3% yesterday). We won't have bone marrow test results for a couple of days and the doctors and nurses won't speculate. Perhaps we shouldn't either but is there a chance that the blast levels could preclude transplant as an option? Can any of you with experience try to address some of these questions in addition to that one? Is another round of chemo likely to try for remission again? Do they do multiple trys? Is it possible he could get another round and go straight to transplant (he did have four days with no blasts)? I know the logical response to all of this is that everybody is different and we should ask the doctor. We want to be hopefully optimistic and yet realistic about this journey.

Also, can anyone advise what I do in all this? Burt is retired, I still work. My boss has been unbelieveably sympathetic and while I don't want to take advantage, I really don't want to be at work and leave Burt by himself (which may be more for me than him). He has two grown children on either coast who come as much as they can. I am blessed with an amazingly supportive network of friends and family and know how very lucky I am. But Burt is not just the light of my life, he is my life. How, how, how, do you get through it?

The journey continues

shashelt@msn.com — Sat, 04 Apr 2009 03:51:07 GMT

Hi kids!

We'll see how badly I can mess my first thread up here. LOL

I'm continuing the thread from the old board that was "Good News and...." just wish we could bring the thread with us. So many ups and downs and you have been so supportive and kind.

So come on in, gather round the kitchen table and sit a bit. The coffee pot will continue to be on and you can just make yourself to home.

...from where we kind of left off...

My legs are still swollen but it seems an increase in the lasix is doing some good. If not better over the weekend, I've been directed by my onc to head to the ER. Keep your fingers crossed cos it can take hours to get thru the ER if one isn'tin a life threatening way. I have to stop in on Monday at doc's to get another CBC on Monday anyway - may just be stubborn and wait. Not much difference between Sunday and Monday.

The fundraising continues - thanks for asking and now up to $750 (thank you, big Sis!!) with more pledges promised. Still working toward that $1600 by June 1. God willing - it will happen.

Alrighty, let's see if I can make this thing work now. I'm such an old dog at learning new tricks. LOLOL

Sharon

Husband starting Allo MUD SCT at the end of this month.

levica@neo.tamu.edu — Thu, 06 Aug 2009 20:37:59 GMT

Hello all. I've been following several of your stories for a little while now. I put my story in the tell us your story section, but as my husband is going through a SCT, thought I'd start a discussion here. He has relapsed Hodgkin's Lymphoma. He is getting his transplant at MD Anderson. He starts pre-staging Aug 17th and the transplant will be the 27th or 28th. His only brother was not a match, but thankfully MDA ended having 5 unrelated matches in their registry.

I was wondering, any suggestions, as we prepare to go down there, as to what to take with us, anything to expect your doctors didn't mention, etc? We're ready to get this started, but nervous too. Not to mention I'll be leaving my two furbabies for quite awhile. Thankfully we don't live too far (2 hrs)from MDA so I plan to visit them often, that way they don't think they have new parents

Did you go somewhere far away for transplant?

communityreply@lls.org — Sat, 14 Nov 2009 03:09:42 GMT

...If so, what were your reasons?

If you were originally being treated at a cancer center closer to home and then decided to go somewhere far away for your transplant, what was the decision making process, and how far in advance did you have to make that decision?

Just wondering if the insurance company made the decision or gave anyone problems about you wanting to go somewhere else, or if you had to go far away due to a closer transplant center not being able to do the type of transplant you needed, etc?

And for that matter, if anyone out there didn't go to one of those "very top" transplant centers, did you feel like you didn't receive treatment as good as you would have if you had gone somewhere "better"?

My brother is being treated at an NCI "comprehensive cancer center", but they only allow one mismatch in 10 for HLA typing, and don't do many cord blood transplants in adults, so we know that if he needs more mismatches or cord blood, he'd probably have to go somewhere else, and I'm just trying to think ahead about how that decision is made...

thanks!

-sara

Husband discharged +13....now worried if they let him go to early

pyewackit22@yahoo.com — Mon, 09 Nov 2009 22:00:55 GMT

Hi everyone,

Well John's transplant went well and was released last Thursday at +13. We went to hospital for check up and blood work Saturday morning. His counts were almost normal range and no signs of GVHD. They are taking out his Hickman line this Wednesday and then we will go to hospital once a week. for a few months.

While everything seems ok John sleeps 24/ 7. Seriously, he isn't talking , eating, or doing anything at all. He is maybe awake long enough for me to give him his meds and go to the bathroom and that is it. I know the TBI and Chemo was very hard on him, but he seems to be worse since we have been home. I think he could also be depressed but not sure.

Was anyone else this tired??? I just never imagined he would sleep so much. How long does this last? I asked doctor a little about it, but he had to leave someone paged him and he was off before I got any real answers.

I appreciate any input ....thanks so much!!

Christina

Relapse Number 2 (Post transplant)

jmw280@gmail.com — Wed, 01 Jul 2009 14:43:49 GMT

Hi Everyone,

I posted here a few times....and now, unfortunately, I'm back. My husband's blood showed 5% blasts at his visit on Monday. It hasn't been confirmed with a biopsy yet, but this looks like relapse #2. He's had a full transplant (full match sibling), and then chemo/dli after relapse #1. He has AML subtype M0. I can't help but think that there is not much hope left, and I don't know how we're going to do this again. It seems like we just home from the last round.

He's not quite neutrapenic yet, so the doctor thought we could have a couple of days at home. We're waiting to hear from them as to how many days before he's admitted. Treatment is going to involve a drug he hasn't had yet (not sure which one), and then if they can get him into remission, they will try an mini unrelated donor transplant. There are going to be insurance issues with that....so far we've been very lucky financially, but I don't know how long that we'll be able to hang on...

Jeff took an Ambien this morning and is going to try to sleep the day away. I had to come into work and try to get organized, and figure out, once again, how to do my job from a hospital room. Our 18 month old son is home with Jeff's mom and my dad, and luckily, he doesn't seem to get that anything is amiss.

I'll keep everyone posted.

Diffuse Non-Hodgkins Lymphoma

communityreply@lls.org — Wed, 30 Sep 2009 04:16:49 GMT

Just got diagnosed. Has anyone already done chemo treatments of R Chop for this? I am fundamentally freaking out, because I have practiced holistic medicine all my life. The idea of something negative assaulting your body that will hurt other things doesn't make sense to me. Has anyone tried things like the Gerzon therapy? Essiac Tea, Juicing, etc.

Treatment options after stem cell transplant relapse of aml

communityreply@lls.org — Fri, 17 Apr 2009 15:06:44 GMT

I'm brand new to the discussion boards so I hope I do this correctly. My husband has relapsed AML after stem cell transplant which was performed just over a year ago. At his one year check-up he showed 15% blasts in the marrow; none in the blood. He is currently participating in a trial where he received an infusion of donor t cells sensitized to the WT1 protein (on most AML cells). Has anyone else tried this? We're approaching week 3 of an 8 week study and so far his counts continue to slowly drop. Another bma will be done at week 4 but I'm anxious about waiting and the possibility of his blast count getting out of control.

If he doesn't respond to this immunotherapy then we'll have to decide between trying donor lymphocyte infusion (DLI) of natural killer cells, probably with a round of chemo first, or another transplant. I'd love to hear from anyone with AML who has tried the DLI to find out what your experience was. He hasn't had any GVH; his donor was a perfect sibling match and my husband was on cyclosporine for a whole year to prevent GVH.

Looking for Liberal Logic

communityreply@lls.org — Sat, 07 Nov 2009 01:30:19 GMT

A few weeks ago while lunching with some of my geezer bike buddies I engaged one of the few “liberal” ones relative to the multitude of impending health care bills. He owns several restaurants so one could easily assume his political viewpoint would be “conservative” in nature. Not so. After much heated (but friendly) discussion, I could only conclude that his logic was so inconsistent on this particular issue as to be completely incomprehensible. In a nut shell, he wanted government run health care because of his (genuine) concern for the uninsured, while simultaneously complaining about his current tax load.

Earlier today an exchange took place with a person holding what I now believe to be a similarly illogical set of operating principles. During my walk-about shortly afterwards, the single remaining brain cell I retain cogitated (hence the appellation “codger”) on that exchange and I felt compelled to put thought to paper upon my return home.

In as much as I know very few “liberal” people I’m not sure if it’s a problem with my own logic or I just came across two illogically liberal people by accident.

The flow went like this. I stated that if worldwide wealth was evenly distributed everyone would have a little less than $9000 in net worth. Furthermore, any “spread the wealth around” liberal retaining more personal wealth than this is clearly a hypocrite. To this came a response that this person was certainly not impoverished (more than $9k?) and should be voting Republican (is this joined at the hip with “conservative”?) which I took as indicative of having a LOT more than $9k.

I suggested a perfect Marxian exchange between the two of us. He should send me his money down to the “fair” $9k level because I have a need for it, and he has the wherewithal to pay it. No joy. He proclaimed to be a liberal but not a socialist. In today’s political climate, I find little to distinguish the two. As further proof of capitolistic non-socialism his stated goal was to pay a million a year in taxes. This immediately poses several questions in the logic train.

First, if he’s so eager to send a million into the black hole of government, why not send it to a deserving person (me) instead? That would be the compassionate thing to do in helping his fellow man (me) and I’d make much better use of it than Barney or Nancy would. It truely would be stimulating to my economy!

Second, unlike NOT paying the Benevolent Borgovernment Collective …there’s no law keeping him from making his goal in flying colors this very instant by immediately sending everything he owns into that black hole. I’ve yet to hear about a Goon Squad threatening to kneecap anyone for overpaying extortion money.

Third, no matter how magnanimous the liberal, at some confiscation level (we’re at least 70% for many people now) even he will begin to squawk. You can be sure “fair” will begin to pop up with increasing frequency in his conversations as the “take” moves closer to 100%. And yet, we conservatives are characterized as cold and uncaring for objecting to the present levels of extraction.

Is there any logic here? Previous to were I now live, I spent over nine years fighting city and county agencies relative to a huge environmental insult they forced onto my neighborhood. Hundreds of hours in the county law library and countless meetings with government employees taught me not to expect much from “government group think” I too often detect in so many liberal positions, but perhaps someone can convince me otherwise.

adam's transplant

communityreply@lls.org — Wed, 12 Aug 2009 21:15:45 GMT

Hello, I am new here, but I am following this board for many months.I am writting from Poland, sorry for my rather poor and limited english language. My husband Adam is preparing for MUD transpalant. He is 57 yrs old and was dx january 2007 MCL , in blasts crisis. After some chemo ( two inductions and 4 rounds of consolidations) and being on inhibiors ( gleevec, sprycel, and now tasigna) for 2,5 years now time for the transplant. I am full of hope and scary for death in the some time.He is doing now very well, working full time, without any health problems, only leukemia! We are together for 28 years, two adults daughters.

His will be admit in the hospital in city of Poznan ( about 350 km from Krakow, where we are living) in first's days of september.I am looking for inspirations, support encouragement and yours experience and knowledge.You are amazing group of people. Once again sorry for my grammar and spelling mistakes. Marta

Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Fri, 01 May 2009 15:40:59 GMT

Hello Everyone,

I would first like to say thank you for all of the support and well wishes through Caroline's relapse. For those of you who weren't on my thread "Possible Relapse - Please Help". I would like to give a little background.

My wife Caroline, who is 25 years old was diagnosed with AML M2 in August '08. In CR1 by September and finished up with 4 rounds of consolidation in January. Then along came April 16th... We went in for a normal CBC and platelets had dropped from 120-140 to 42. Her Onc did an immediate BMB, and we had a week to wait for the results.

One week later... back to her ONC at UPENN and we get a positive test result with 25% blasts in the marrow. None in the blood. Caroline was admitted that day and started a regimen called "MEC". Its for relapsed AML with CR1 of less than a year.

She has completed the regimen and so far the only side effects is a nasty rash where the dressing covers the hickman. We had these issues with her PIC last time and none of the available dressings seem to work.

Her counts have really started to fall now, with her ANC at 400 yesterday she is now neutropenic. Now stuck with the nasty hospital food! Ickkk!

Next step is to get an empty marrow on Day +14 (I think we are on +7) and then get to CR2 on the day +28 BMB. If all goes well with that she is scheduled to start conditiong for a 10/10 MUD transplant from 3 possible donors on June 7th. This will include Cytoxin and full body raidiation.

She is still feeling well and hasn't had to have any transfusions as of yet. I can see those coming on either tomorrow or the next day. She is just a bit tired from the low hemoglobin (around 8.5 i think).

I will continue to post updates through her Journey.

Thank you all,

Adam

PJ's Transplantcation Begins July 31

communityreply@lls.org — Thu, 16 Jul 2009 22:22:42 GMT

Desperate economic times call for creative vacation options and I have mine in place. I will be admitted Friday, July 31 for Hickman catheter insertion, and to start radiation along with the other preparation (yet to be confirmed). My transplant will either be August 6th or 7th, depending on whether donor collection is the 6th or 7th, which means the donor is somewhere relatively close by. The 6th is a full moon (hear me howl), and more memorably, the anniversary of the day the atomic bomb was dropped on Hiroshima. I will quite possibly have enough radiation in me to out-glow even the moon.

I wrote down what I felt today when I received the reservation confirmation: Elation for 5 minutes in which I rushed outside to tell husband; shortly followed by copious weeping at the idea that an anonymous donor was willing to save my life. Then came a quick follow-up with Dana-Farber's Transplant Financial Coordinator that all my ducks were lined up with my insurance company.

My bags are packed I'm ready to go ... Please send bon voyage messages to me here. Or check my blog for updates from me or guest bloggers: www.pj-plog@blogspot.com

Prayers for mom/Beverly/Is an ^^angel^^

nicole_rc@yahoo.com — Sun, 02 Aug 2009 16:53:23 GMT

SCIRROSIS of the LIver , infection in moms blood..

The Dr. just told sis for us to prepare for her not to be around long, not within 6months! Im numb and feel like dying inside nicole

AML MLL anyone achieving remission ?

communityreply@lls.org — Wed, 21 Oct 2009 17:42:17 GMT

My husband, 46 yrs old, was diagnosed with AML MLL in January 2009. His initial induction and consolidation failed and we then got ready for a BMT which he received on 7/10/09 which also failed. He is now on the decitibine and mylotarg therapy which we hope will place him into remission. In the meantime we are looking at all alternatives, in the states and world-wide. AML-MLL is pretty resistant but we are hopeful !

He's never been ill in the 20 years I've know him, a runner, non-smoker, non-drinker, no coffee or soda either.....there has to be something to reverse the leukemia switch....

My mum has relapsed AML

communityreply@lls.org — Wed, 17 Jun 2009 19:10:20 GMT

I just want to let you all know that my mum of 67 years old has just found out she has relapsed today with AML

She has 18% leukemic blasts. her white cells are up and her neutraphils have dropped some. Her platelets are ok and in general mum feels very well.

It was the monthly checkup which showed she had relapsed there were no other signs at all.

Mum went into remision after the first induction round of chemo Jan 09, and had two consolidations.

She was on a clinical trial.

As mum is 67 and has a rare tissue, the docs have ruled out transplants of any kind. They say the risk is worse than the outcome could be.

She has gone away today devastated and the consultants are going to have a meeting what to do next.

Whether she has injection chemo or something different we don't know.

We thought mum was doing excellent. She recovered from pneumonia in Dec 08, and then has been home since Jan 09.

She has been walking, driving the car, playing bingo, going out for meals etc.

Do you think she has been doing too much. Can overdoing it make you relapse?

I am so worried and feel sick and I am abroad on holiday. Mum didn't want me to fly back and ruin our holiday. We go back this saturday though.

is there anybody here who has survived the aml after a relapse with chemo only please?

Bearing in mind mums age.

She is a strong woman and will do all she can to keep it away.

Thanks for listening.

Binnie from the UK

Prayers for mom is now an ^^angel^^

nicole_rc@yahoo.com — Thu, 24 Sep 2009 23:11:02 GMT

I started a new forum because my old one was becoming overloaded:) Where do I begin??

First and foremost THANK YOU Kelly and John for coming to my moms celebration. It was a long drive for both of you, and I can only imagine how you felt, Kelly battling your own fight and John losing your wife! It made my day to know that you both went out of your way to share this day with me, it meant so much!

Second, THANK ALL OF YOU, for all your support, prayers and encouragement on this long journey.. It was long, it was a rollercoaster, you laughed and cried with me.. these three things remained: hope, faith, and love! It is hard to believe my sweet mom passed. I flew home today with Jason. It was hard leaving my parents home, each thing is hard.. and especially knowing I can never talk to her face to face or over the phone. My father this morning weeped to us, lastnight he dreamt about mom.. It is so hard to see him bent over sobbing, due to his pain.

I think yesterday was the worst.. It was our first day without her and knowing we laid her to rest. My sister and I went through her things. We took all her medical supplies, about 5 boxes to the rehab at Thorton Terrace. We went through all her pictures, her hats and scarfs, her perfumes and lotions, her goodies around the house.. Everything was her. I think for the first time I noticed all of the pictures on the walls that she hand picked and hanged. Her closets and drawers are crammed with things she has saved for gifts for other.. journals, books, cards, kids games, jewelry, binoculars, purses, toys, makeup, diary's, ties, socks, lotions, puzzles.. Mom saved everything and always would give something away as a gift. She was such a giving person. Then just when you think she couldn't do anymore she had hid away money for my father tucked away in a secret place.. she was alway thinking of us. We also found the quarter binder she had made for all of us with all the states quarters, there were little gifts that said, for my daughter...there were 2, one for me and one for sis. I found little baby girl outfits, newborn she had purchased for our new little niece coming soon.. There were a few gift books she had wrote at Thorton Terrace on July 4th and I was able to give these gifts to a few of her friends who she had planned to give them. There was an angel among us the whole time! i knew it would be painful, I knew it would be hard, but it is so much worse than I expected.. Today I sobbed on the plane, I was looking out at the clouds and thinking of all the vacations my mom loved and how she had hoped to go to Paris and on a cruise with us in the coming years. With all the bad news the last months I never thought she would go.. even after she died and I watched her I was waiting for her heart to beat again. I have so many different thought which I know are natural, Why her? Why couldn't she be here atleast a few more years? What if things would have been different at IU that weekend? Then i have those feelings that I don't want to get over it, because I never want to forget her, and I don't want to think about her being in a better place because she should be here, and I don't want to think about transplants, because gvhd was the monstor..and then what could be better, what if oh I would go crazy! The hardest most heart wrenching part for me is wondering what she was thinking that last month.. Yes, she was smiling and rarely showed pain and uncomfort, but did she want to talk and of course she couldn't.. Would she had said don't give up and help me, or would she have said let me go.. Would she have told me something that she needed to get off her mind, was she angry about the Dr.s poking and prodding her, was she scared that she couldn't move her legs or arms.. I just want to know that she had no questions and that she was okay! However, this is the only comfort I have, the fact she told us long long before this happen that she was ready and she was willing to leave the earth. Why did she want to leave, was it because of the pain and anguish or because she was ready to be in a better place. Once again I have to fight these questions... Mom said she was ready for years.. it had nothing to do with leukemia, nothing to do with blood, tubes and needles or her frail body. She wanted to be with her Lord. I have to focus on that to keep myself sane:) Here is my CB update that I forgot to post here lastnight and it is my description of the celebration!

On Sept. 18 our mother became an Angel. We were there with her.. she had fought hard those last few days, and even on her day she passed she smiled several times. Sis and I were not even in the room and mom went so quickly and peacefully, thankfully. By the time we began running to the room where her family was, her heart took its last beat. She passed with a smile on her face, and we knew the Angels carried her home.
Yesterday we had her celebration of life. It was beautiful and came together just how we had planned. She was buried in a cherry casket, wearing her red dress she wore at my wedding. Mom was buried with her Thorton Terrace blanket covering her, one of her favorite boyds bear she had collected many, the flower from my wedding, the hawaiian necklace she wore on her stem cell transplant day, and other special items. She wore her leapord hat and soft fluffy socks.. Mom loved to be shoeless, and in heaven she will need no shoes.
The most amazing thing of the day was the family and friends who came. Rich and Poor, different races and all religions, from all communities. A special surprise for me was a man named Kelly I had met on the Leukemia board years ago, as well as sweet John. Also Nicki Sarver came upto me and told me wonderful things that melted my heart, she just lost her dad and still came to support us. The support and love that filled the Kent church was amazing, but it was the Legacy of our mother.. she touched everyone and anyone who knew her.
At the service we sang some of moms favorite hymns. "When we all get to Heaven", "Amazing Grace", "Victory in Jesus", and "Pass it on". We played "Wind beneath my wings" and "The Climb". My uncle Gary sang his heart out as he sang "I can only imagine"
We set there in the front row and it we sang our hearts out to mom in heaven. She lay there, her body, soo beautiful! We did not plan on having an open casket due to her cicumstances, however, when we saw her once again, Mom blew us away.. She was gorgeous, she looked like a queen, like an angel glowing!
The sermon by mothers pastor, Preacher Danny, was wonderul, and he talked about mom living her life for Jesus, and how he did not have to fib even a tiny bit, because all the words he spoke were true about our mom. "2 Timothy 4:6-8: For I am already being poured out as a drink offering, and the time of my departure has come. I have fought the good fight, I have finished the course, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord the righteous Judge, will award to me on that day; and not only me, but also to all who have loved his appearing."
My cousin, Preacher Mike Jones then read the letter my mom and left to her family and friends. She had wrote it 1 year ago. Mom thanked everyone inn her letter and spoke about her love for my father. In the end her final words were, "I love you all, but I love Jesus more"!
As we went to the graveside service my cousin Mike spoke about mom perserverance in all aspects of her life.. He summed it up beautfiully to a poem written by Mother Teresa, "Anyway".
As we began the final prayer it began to rain..

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway by Mother Teresa.

Our hearts are broken.. Things will never be same without mom. We know people say time will heal, but I don't believe some of us will ever heal.. we will just keep going on, because we have too. We know she is in a better place and people will always remind us, but still we will ache for her and long for her. No one will ever replace her and forever we will have a hole in our heart. We still don't understand and it still doesn't make sence how mom went from going home to on a ventilator. We know the medical reason why of course, but it does not make sense how she got to that point. She was in the best hospital in the states and there in a hospital room she came to a dying point when she was suppose to be going home. There are questions we hope to one day have the answers too.

It is not fair that we lost our mom.. It is just not right..I know others do and its a part of life, but our mother loved living and loved giving. This home is feeled with her remembrance every step we see her face... This home and the things she worked so hard for.. mom always worked for everything, because nothing was given to her. To know she will never set in this room with sister and I is unimaginable. To know she will never walk in her home is unreal.. We never ever believed she would die, even though we had been told it was possible. I never truly believed she would leave us. We feel so bad for dad, what he thought was only a short time to sleep without mom has now turned into eternity, what I thought was months in between seeing her on holidays is now my lifetime.

We had settled for mother the way she was, we had settled for the thin and tiny person she became, we settled for her bruising and aches, we settled for the changes she had to make.. we settled because we still had her.
That last month it is hard to imagine what she was thinking, I am sure she was preparing and loving us while still with us..but it is still hard to wonder what she was trully thinking because she couldn't speak, what she thought since she couldn't move her body because of weakness. Like us Mom settled to be with us one more day, just like us she settled to keep seeing our smiling face!

We will have a copy of the service that I will post for any one to view in the coming days.

Thank you from the bottom of our hearts for supporting us, for praying for us, for believing in the special Bevy Suee who touched your heart in some way! Thank you for the cards, the donations to Thorton Terrace and the American Cancer Society!

Hamish's Relapse

communityreply@lls.org — Fri, 05 Jun 2009 13:16:25 GMT

Hi Everyone

For those of you who have supported us in the past, I ask that you support us again as Hamish has indeed relapsed. I am struggling to come to terms with it naturally and trying my utmost to keep a brave face on it all for my young man. I'm afraid I'm not so successful at this moment, but trying hard to get "my big girl knickers on" for him. Its almost unbelievable that nearly six years out he is facing this beast again and I just shudder to even think of outcomes this time. I can't bear to go there.

Hamish is incredibly strong ... and he is ready to put up the fight of his life. He is already talking about how much more focussed he wants to be going into this, I love him so much and it is really causing me enourmous pain to think that a young man of 18 has to face this again having already put up the fight of his life once. But I know he is going to do this and I will fight my god damn hardest with him every step of the way.

So ... he does have to leave the children's hospital and his doctor was just so wonderful today in breaking the news to us and talking us through his new doctor etc. We meet the new team on Tuesday, his doctor has let him come home for the long weekend here as Hamish is well ... really really well ... you have to know how this insidious disease works to understand that huh ? I'm not sure what the treatment will be but likely induction and I guess another transplant if he is strong enough. Apparently there was no match on the global registry last time, but hopeful this time there will be as it is so long since his last one. It is unlikely that I will be his donor again.

I appreciate those of you who pray that you will pray for my son and the journey he is about to make. Thanks everyone,

Sandra

Day 5. Cakewalk so Far

communityreply@lls.org — Wed, 11 Nov 2009 22:24:50 GMT

Hi all

I thought I should check in here because it has been a while since I last posted anything. So far my stay at this hospital has been very uneventful. I am more worried more about how my wife and family are dealing with this disease. I couldn't ask for a more supportive family. I feel a little guilty and incredibly lucky that things are going so good for me. It turns out that my younger sister was a perfect match for my stem cell transplant. I haven't had any fevers or mouth sores yet.

Walking the halls here I have met a few other patients who are really suffering. Oncology wards can be pretty downer places. In spite of the predicaments some of my fellow patients are in, it is still easy to smile and laugh while we chat about our respective experiences.

I feel much stronger than I did when I was first admitted for my induction Chemo. Back then I entered the hospital in a weakened state and just got weaker from two months in bed. When I was sent home during "remission" I was determined to go back when the time came in much better physical condition. I started riding my bike again. I found I could go 15 miles pretty easy in spite of my hematocrit being about 34. By the time I was re admitted about 6 weeks later for my SCT I was up to riding 50 miles almost every day.

My counts are still dropping and the doctor tells me that they will bottom out about day 7. I have been diligent about mouth hygiene and exercising. I have a spin bike parked in my room that I ride every day. I walk the halls every day until my feet get sore. I know what a fever and mouth sores are like from my prior hospital stay and I am not looking forward to going there again. It is not over yet though and the next week is still a vulnerable time. I hope my luck holds this time. I realize that I am far from out of the woods. I have yet to experience GVHD and all the other myriads of complications that could rear up with this ugly disease. I have to give credit to the doctors and the staff here at UCSF for helping me. The whole crack team here is working for me and it would not be so easy if I was without them.

If all continues to go well I will be discharged about day 20. My wife and I had to find a place to live nearby UCSF. We found an apartment nearby shopping on Craigslist. My neighbors will be taking care of our dogs back home.

Take Care

Mike

Laughter. . .

communityreply@lls.org — Mon, 06 Apr 2009 15:37:38 GMT

A Sheriff stops at a ranch in a rural county and talks with an old farmer.

He tells the farmer, 'I need to inspect your ranch for illegal grown drugs.'

The old farmer says, 'Okay, but don't go in that field over there.'

The Sheriif verbally explodes saying, 'Mister, I have the authority of the Sheriffs Department with me.' eaching into his rear pant pocket and removing his badge. The officer proudly displays it to the farmer. 'See this badge? This badge means I am allowed to go wherever I wish..on any land. No questions asked or answers given. Have I made myself clear? Do you understand?'

The old farmer nods politely and goes about his chores.

Later, the old farmer hears loud screams and spies the Sheriff running for his life and close behind is the armer's bull. With every step the bull is gaining ground on the officer. The Sheriff is clearly terrified.

The old farmer immediately throws down his tools, runs to the fence and yells at the top of his lungs.......

'Your badge! Show him your badge Smartass!

suggestions for hobbies when stuck in the hospital?

communityreply@lls.org — Sat, 14 Nov 2009 01:39:01 GMT

I'm new here, and have been reading for the past couple of weeks (and also read a couple years ago). It's my first time posting, and I'll probably go into more details about treatment questions, etc. in another post, but I had a quick question that I thought people on this board might be able to help with.

First, the summary of my story is my 22 year-old little brother has relapsed ALL (relapsed 2 weeks ago, soon after going off maintenance therapy in early August), and is now in re-induction therapy to try to get him into remission again so he can get a BMT/SCT in a few months. He's been in the hospital for 2 weeks, and will continue to stay for a while. I live out of the country and can't visit him now, so I'm trying to do what I can from abroad by way of research for our parents, helping think of questions for the docs, and sending him stuff if I can. (I will be back in the states before the transplant, and so wish I could be there right now, but I'm trying to get my life and job sorted out, so it's taking me a little while...)

So, my question....He's on the BMT floor, and stuck on it, can't go out, etc, so he's really bored. Unfortunately, at this hospital, the BMT floor is claustrophobic - really small rooms, no exercise equipment (except walking in circles around the really tiny floor), and a super small "family room". He feels pretty okay health-wise, so being bored is frustrating, as it's not like he wants to just sleep all the time. He's got a dvd player, and his computer, and a Netflix subscription so he can stream movies in his room, but he's sick of tv and movies. He does have friends come visit, but he needs stuff to do with his hands when he's there alone, I think. Previous to all of this, his really hobby was soccer - played it all the time, super-active, so he wasn't the type to have crafty hobbies or anything, no painting, etc. I think he'd be open to picking up a new hobby if I could give some suggestions, but since a lot of things like that are more girly (knitting, etc), I'm not sure what to suggest. Something like knitting might not even be out of the question, but it's also hard to just pick up on your own, so other ideas would be much appreciated... I'd love to send him any little things I can think of to help keep him occupied and give him something to do.

Any suggestions?

Thanks!

Sara

Bf has been Given a Diagnosis I guess?

communityreply@lls.org — Thu, 15 Oct 2009 23:00:01 GMT

Well, Today they gave me this on Todd. Intermediate prognosis.normal karotype not showing chromsomal translocation of t(8:21).So far I really don't understand this.His counts are still dropping and he is starting to slow down, more fatigue, nauseated, eating ALOT of milk and crackers.He has one more day of ara-c and the Doctor said that there is a "good" chance he will go into remission.I am praying he does.My question is this:What do the genetics have to do with the prognosis? And with AML m2 what is considered"favorable" or does it matter?She also said something to the effect of de novo which I don't have a clue what that is.What makes it different from MDS?Can someone please explain this to me.When the doctor's are talking to me it's almost like they are speaking a foreign language.As far as Intermediate is concerned is that good or bad?

I gave blood today

communityreply@lls.org — Wed, 11 Nov 2009 17:49:28 GMT

It was my second donation since my dad passed away on August 13. I know it's not much, but it feels like the one thing I can do to give back in a tangible way. It boggles my mind how many transfusions my dad received - that all blood cancer patients receive - and how many single acts of kindness it takes to make that possible.

Friday will mark three months since I lost my dad. It still sucks, but I'm functioning. When I want to, I can create a vivid picture of his face right before my eyes, and it seems very recent and real. But each time I do it, I'm afraid the image is going to fade until I can't see it anymore.

I've never experienced this type of loss before - is there a point when it will hit me? It still feels completely surreal that my dad is gone. I don't fully buy it yet. He doesn't feel "gone", it just seems like I've been busy and haven't seen him in a while.

Unfortunately, the "Coping with Grief" board doesn't get too much action, so I decided to post here. Just wanted to express some feelings to people whom I know care.

Hugs and good health to you all!

Leslie

I'm back for more Stem Cells

mark@artmarkdesigns.com — Tue, 07 Jul 2009 22:28:49 GMT

Hi guys , My journey continues on the trail for the strong healthy stemcells.

Looks like I will be having the Allo transplant with my brothers cells after all.

They say if I dont have the SCT I will have less then 3 years but if I do I may be cured or have extended the years a bit more.

But not without complications of course ,like possible long term side affects.

I have to decide soon on what to do ,my wife is upset ,she dont want me to rush into it.

But I dont want to risk the cancer growing back or spreading.

I knoe I;m freeking out a bit , I'm posting hear in a hope to have some insight from those that have gone through the Journey of two transplants of cells.

The transplant will happen mid September this year at Westmead Hospital.

No Definet dates as yet.

Mark.....

This insidious disease

foreverhopeful3@yahoo.com — Sat, 24 Oct 2009 13:16:00 GMT

As my daughter is approaching the 4th anniversary of her SCT, she was hit with the news that she has relapsed with AML. The relapse is unusual, in that her bone marrow is perfect--no sign of leukemic blasts anywhere. Her blood counts have also been normal for years, with platelets (previously the harbinger of relapse for her) still in the mid- to high normal range. She has relapsed with extramedullary disease: they found the AML in her GI tract and some lymph nodes. Just to recap her history, she was diagnosed with AML one week before her 20th birthday, went into remission after one induction round and then had 4 rounds of consolidation. Relapsed just over 12 months after her initial diagnosis, went into remission after one induction, relapsed just before MUD SCT but they decided to do it anyway since her blasts were 11%. Went into remission, had full engraftment and was discharged at day +17, and she hasn't been re-admitted to the hospital since. Developed chronic GVHD (mostly skin) about 5 months after SCT, it has been controlled with immunosuppressants and photopheresis, recently was treated for another flare of GVHD.

Marie was at 46 months post-SCT when she had abdominal pain which she first thought was indigestion or viral, then docs suggested gall bladder issues (based on high bilirubin and liver enzymes). Further investigation with biopsy of stomach and duodenum showed AML (biopsies were done thinking it might be GVHD). From what I understand, this type of relapse is extremely rare, particularly with her disease characteristics and course. Has anyone here had an extramedullary relapse without bone marrow relapse? I am anxious to get any info from others who have dealt with this.

We are, of course, devastated by this turn of events. How I HATE this insidious disease.

She just finished treatment with FLAG (fludarabine, araC and G-CSF) and is still neutropenic. They'll do another scan in a couple of weeks to determine whether the disease has retreated (it's so strange not to get info on disease from bone marrow biopsies). Depending on the results, they'll either do another round of chemo or go straight to second SCT with a new unrelated donor.

We can use any words of hope from all of you who know what we're going through.

H1N1 Vaccine

communityreply@lls.org — Thu, 19 Nov 2009 23:50:00 GMT

http://www.youtube.com/watch?v=Tb6j7qMFy2c&feature=related

I was going to have Chz get vaccinated this week. He told me about this girl who got dystonia 10 days after receiving the vaccine. He says he would rather wash his hands frequently and stay away from sick people. "It happens to 1 in a million and so does my leukemia after getting my MMR vaccine!". Aaahhhhgh! Our GP is against it. But our onc highly recommends it. The things we have to deal with.

What would you do?

Chromosomes 1 & 8 Question

communityreply@lls.org — Tue, 17 Nov 2009 02:03:41 GMT

My sister, 45 was diagnosed with AML. She completed induction and it has been determined that she needs a bone marrow transplant because of Chromsome 8 and Chromosome 1. Where can I find more info on Chromosomes? Does anyone know what that means? Bone Marrow transplants are so risky. My brother and I are not perfect matches, they are analyzing our mother's to see if one of us are good enough. Will know more in a week or so. So much to know, so little time. Thanks.

just diagnosed (very early) with CML,

communityreply@lls.org — Sun, 01 Nov 2009 04:21:34 GMT

Hi everyone, thanks for being here. My name is Buzz, and i was diagnosed with CML a little over a week ago.

This past week has been very trying; I've been dealing with a bout of depression, caused by the underlying anger at the thought of having to deal with something that I have absolutely no control over.

not easy for a guy to deal with

I have a serious injury caused degenerative condition in my neck, that takes just about everything I have to stay above it.

soon

I was getting very worried that I would require another neck operation - and lose another year out of my life

now that seems to be far removed from my worries.

I needed to come here tonight and share a few feelings.

My new doctor said not to worry, we are really early with the diagnosis.

Bone marrow test on Dec. 11th to establish a baseline; I'll start Gleevec 400mg at that time. I'm still going through price sticker shock at the cost of the medication. $4076 for 30 days through Kaiser Senior (Medicare) Advantage. The Donut Hole begins at $2830, at which point my out-of -pocket will be $4,350, and then catastrophic coverage kicks in and it's almost free for the rest of the year. (that'll be next year). Funny that it wasn't more than three weeks ago that Kaiser sent me my drug cost summary for the nine months ended Sept. 30, and I looked at the numbers and thought to myself "I'll never reach the donut hole."

My understatement for this year.

Can't say this is something I am really looking forward to.

Buzz

Approaching SCT for Adult ALL

hocdx1@aol.com — Wed, 22 Jul 2009 01:50:27 GMT

I have only posted a few times here and the feedback I have recieved has been wonderful. I am in 1st remission for pre-B ALL diagnosed Feb 09. I have had 6 rounds of Hyper-CVAD and I am about to get a SCT at Mayo in Phoenix. I suppose today could be considered day -21. My donor is a 9/10 match yet everyone at Mayo seems to be extremely confident that this will give me the best chance to survive. I feel like my choice is a bit on the aggressive side, but I really feel like its the right decision for me. I want to take this opportunity to recieve a SCT while I have it because I know it may be the only chance I get. I am certainly going through a wide range of emotions right now from fear to excitement. The hardest part is that I feel great right now. Im nearly back to normal with the added high of not taking every breath for granted like I once did. Its an odd feeling knowing I am going into something that could have a variety of outcomes and no matter what the statistics are, my path is yet to be determined. My personal opinion is that I will do ok, but I know that there is a chance that this may not turn out well.

Is anyone familiar with the drug ATG? I know it will be used to prevent GVHD and have heard some good things about it. I was curious if anyone has had experience with it or if it is just the norm for anyone going through this.

Thanks for the info, I am sure I will be getting to virtually know many of you through this process.

Travis

CML with T315i Mutation

communityreply@lls.org — Fri, 10 Apr 2009 16:27:56 GMT

I figured I should start my own thread now that we have moved to this new board.

Brief background: 44yo female, diagnosed CML June '08. Started Gleevec, had great response until March '09. Moved to Sprycel, no response at all. Additional genetic testing showed the T315i mutation. Currently on hydroxyurea until we figure out new plan. Doctors have referred me for a Bone Marrow Transplant. Currently trying to look at other trials/options to make sure I make the best next step for myself. I am being treated at Stanford.

Good news is that my work has been absolutely amazing! Beyond amazing. In fact, one of my co-workers has a friend who is involved with a bone marrow registry sign-up group and my office had a donor drive for me yesterday...almost the entire office signed up (including my chiropractor, who treats most of my co-workers). A few weren't able to due to age or traveling, but what an amazing experience. Honestly, it was overwhelming.

I meet with the BMT team on Monday for an initial evaluation. I figure I need to be moving forward on multiple fronts right now.

Thanks everyone for your advice, input, support, etc. It makes me feel not so alone.

Beth

AML Rookie and don't understand half of what they are saying.

communityreply@lls.org — Wed, 04 Nov 2009 22:42:10 GMT

My name is Rick and I have been diagnosed with AML M2 and don't have a clue what that means other than the obvious. I am still waiting on results of some other tests to determine which chemo regimn I am going to be put on. I guess I was lucky in that it was spotted in my regular A1C blood tests for my diabetes and they found abnormal cells and not from having any of the symptoms they say usually go with it. I have no clue what all it will comprise of other than after my first BMB I was informed that I can expect plenty more of them in the future. I am sitting here in the hospital for the last 6 days after getting the preliminary diagnoses 8 days ago so it has happened so fast that I don't think it has time to really settle in to what I am in for but needless to say fear is an all but too real emotion at this time. I have spent the last couple hours reading so many of your stories here that it does make me feel like I am definitely not alone in this fight. I have read a lot about transplants here and fear that not having any siblings could cause a bigger problem down the road. This all happened so fast that I haven't even had time to try to explain to my children exactly what's going on and that the doctors suggest that they don't come to visit due to the higher chance of bringing in an infection because of the outbreak of the h1n1 virus in the area, I am by no means a wimpy guy but I have cried myself to sleep on more than one occasion because I miss my children so much.

I don't really know the right questions to ask of my doctors so I try to write down everything they say but at this point it isn't much since they haven't gotten any more information other than I have AML and it is type M2 but nothing further than that. All the research that I have tried to do on the Internet regarding AML M2 has just gotten me more confused since it seems like most of it is written for a doctor to decipher than Joe Sausagehead so I have given up but only after I found this forum to turn to due to some extremely straight talk that I can understand.

So generally what I am asking at this time is what questions should I be asking my doctor in the next couple of days so I can understand where I stand on the long road of this disease. I appreciate all response because at this point its all that I have to go on.

Rick

Grieving -- Your Thoughts

tex_silver@yahoo.com — Wed, 18 Nov 2009 20:49:46 GMT

I just had a thought while replying to Gal Pal's thread. I didn't want to hijack her thread so I thought I'd start a new one. I'd some opinions from anyone reading...

~~~~~~~~~~~~~~~~~~

I wonder if some people are afraid the pain will go away for good if they move beyond it? In other words, if I don't remember my loved one every day and hurt over it, will my memory of him/her reduce to the point I don't feel any pain for her ever again? Will that mean I don't grieve anymore?

I constantly try to understand why some folks seem to feel grief for short periods of time while others seem to grieve for months or years. I know that those who go the shorter time don't love the departed less and they don't stop grieving.

I don't want to put thoughts about why or how we grieve in anyone's head. But what do you think about my idea? What other thoughts do you have?

Blessings

Time for a Pep Talk?

tex_silver@yahoo.com — Thu, 24 Sep 2009 17:27:50 GMT

Note: This might be a painful thread for some of us. Please approach ths carefully and bail if needed.

Okay, folks, let's name the elephant in the room. Not like it's been avoided. Let's just put it out there.

As a community, we've been slammed with the deaths and setbacks of our members and/or their loved ones for the past several months. I know from comments I've read that it's taking a toll on many if not all of us. I know I feel like I've been rode hard and put up wet.

For awhile. I thought it was just averages catching up with us. My first few years here death was a relative stranger. The numbers of deaths we experienced did not match the survival statistics. But now it seems like the stats are getting ahead of us. It's tough.

Now, we all know that the pain we feel is nothing compared to the suffering of our friends and their family members. We are reticent to acknowledge we have anything other than sympathy because we know that though we hurt, others hurt much worse.

But dammit, we cannot set aside our own pain, put on a brave face and keep coming out here without at least acknowledging that each death affects our own spirits. Well, we can. But I don't think it's healthy for us. I think it's more likely it will lose us some members if we don't say something about it.

For those of us currently going through treatment, these stories must be a terrible strain. I know they would have been for me. Thankfully, there are still enough of us who've been able to hang around awhile left to continue to show these folks good outcomes are highly possible.

Anyway, I thought I'd get the ball rolling. Each one of us is too important to lose. and we do a lot of good here. But my gut is just wrenched up right now. And there simply aren't other stressors in my life. This forum is just getting upsetting.

So share your feelings. Offer your encouragement. But be real. I think some of us need a great big ol' froup therapy session.

Hell, I realize I'm rambling here. But I don't know how to say this, never done it before in this medium, I just think we need to share some things and get our heads back on straight...and our hearts and spirits healed a little.

So there. Let's see if I'm right.

Blessings

Pray for my mom..

nicole_rc@yahoo.com — Sun, 05 Apr 2009 18:37:57 GMT

Hey guys Im here. Im still working on copying and pasting some of my old threads, what a job that is! See ya all soon..

Mom is on her 4th good day in a row. She has been eating well and exercising. She really hasn't been out of the bed to much, but that will all change when she goes to rehab hopefully this week. She is counting on getting out of the hospital on Tues:) Also she is down to 110 lbs. She lost 10lbs of fluid in less than a week. Her thighs and hips are still pretty swollen. She may have a GI scope test tomorrow to check for bleeding, however, there has been no blood in her stool for the last 3 days. Her spirits are much better. She now calls me:) I feeling pretty good about her going to rehab and the rehab we have chosen. The only big question now is that we found out that medicaid will only cover a bed for 2 weeks, so we now are confused about where she will go in 2 weeks if she is not ready for home, however, I feel pretty optimistic that in 2 weeks she will be walking. Just the otherday she began throwing her legs over to the side of the bed and lifting her self on her own. hugs, nicole

The One Year Mark

communityreply@lls.org — Mon, 02 Nov 2009 18:35:37 GMT

Hi all,

I've posted before on different topics. I wanted to give a quick update.

My wife is 36, she was diagnosed with AML - M5 in June 2008. She had an Allo transplant Oct 24, 2008, part of a study, purposefully mismatched 8/10 donor. No immuno drugs as part of the transplant, but she did take Prednizone for a mild GVHD skin rash for 3 months.

She started back to work part time in February 2009 and full time July 1, 2009. She has been amazing. She received her transplant at Siteman Cancer Center, in St. Louis, and her care has been great. Besides the minor skin rash, no real side effects.

She had her 1 year post transplant BMB two weeks ago and everything was clear. She'll get more details this coming Wednesday when she gets a few more vaccines, but the initial report was that the biopsy was clear of leukemia. Not a big surprise, her blood work has looked great and we knew her 6 month BMB looked good, but it is still comforting to know that the 1 year post transplant BMB looked good too.

Unfortunately, these boards are sometimes filled with set backs and sadness. I wanted to make sure to post some good news.

Happy November everyone.

Kevin in St. Louis

GVHD or dry skin

communityreply@lls.org — Fri, 13 Nov 2009 14:21:07 GMT

I'm about 60 days out from my allo. I have dry skin on my face. Nowhere else. It's a little itchy sometimes. I'm wondering if this could be gvhd.

another question.

Does gvhd get better or do you have it forever?

Partially diagnosed

communityreply@lls.org — Sun, 02 Aug 2009 18:55:01 GMT

Hi,

I just found this site after a friend suggested that I start looking for support. I was just diagnosed with Follicular Lymphoma. I am waiting on the bone marrow results to come back early this week to get the full diagnosis but was told that I either have Stage 2 or 4 depending on the bone marrow. It is really hitting me the last two days that this is real and that I am about to embark on a life changing path here. I am scared and depressed. I know that this is treatable but can't stand the waiting for what will be the next steps. I have a lot of people chiming in with suggestions and recommendations. I have been seeing a great Dr. who has been watching me for the last two years when I had an atypical lymph node in my neck removed and this had just pretty much started. I have seen him regularly for the last two years and have kind of been waiting for this to be diagnosed. This last winter I had another lymph node pop up in my groin area and wound up with bi lateral shingles. The lymph node didn't go away and it was just biopsied a couple of weeks ago and was malignant. I actually wonder if I really had shingles although i just saw that someone else on the postings had mentioned that they had had shingles, so maybe that is common along with non hodgkins. I am curious how fast people have found support groups and what their experiences have been like. I have a 4 month old son with my partner and want to be here and lucid and functioning as I can be.

Thanks for listening,

Wendy

How this journey began... and continues.

karolkerrfico@yahoo.com — Wed, 02 Sep 2009 17:57:20 GMT

It started out as a trip to the doctor for my husband back in 2006... he was diabetic and had an ulcer on his foot. The Doctor had us go to the hospital and have the wound cleaned and debrided by a surgeon. so after a long day I headed home alone since the wound on his foot was much worse than we had originally thought. I decided to stop and pick up some dinner for myself and came home and shared it with the cats. I little bit later, I got so sick I was vommitting for over an hour straight. I never thought it was possible to do that but so it was. I thought it may have been some kind of food borne illness and drove myself to the hospital which is only about a mile from home (not the same one my husband was in mind you... no, he had to go to the one where the doctor has privileges) anyway... the doc there thought that it may be my gall bladder, so they did an ultrasound.. it was inconclusive, so a CT scan was needed.... I went to sleep sometime during this and woke up in a hospital room. A surgeon (oddly enough, the same one who had worked on my husband at a different hoptital the previous day) came in to talk to me and told me I had gall stones, but what really was concerning him was that my spleen was massively enlarged. He told me that an oncologist was gpoing to come in to talk to me. Meeting the onc was not what I expected... I had a mental picture of some crotchety old man... instead here was a young man, probably 15 years younger than me and I felt odd. He was very blunt. ( a trait I have come to respect and enjoy(?) in him as he has seen me trough the journey so far) He told me that he needed to do a bone marrow biopsy to determine what type of cancer I had. you could have knocked me over with a feather. it was the last thing I ever expected to hear. anyway had the test done and went home and cried. it was the only time I have allowed myself to give into the self pity. I decided then and there that I was NOT GOING TO LOSE THIS FIGHT! I kept it from my husband until I got the test results and diagnosis back. Stage 4 Splenic Marginal Zone B Cell Lymphoma... what a mouthful! My dear husband cried when I told him and I decided that he had to help me fight and to stop crying for me. The next step for me was to have my spleen removed... oh yes, they took my gall bladder out too. I had two stable CT scans after that and then came the third... my lymph nodes had doubled in size. PET scan and CT guided biopsy followed, just to make sure we were still dealing with the same thing. Yep, then came chemo... mine was R-CVP. you know how that goes... well I'm coming up to my 3rd scan since chemo..... will see how it goes.... in between chemo and now, my husband lost his battle with diabetes and heart disease

Karol

Day +90, 2nd Transplant

communityreply@lls.org — Fri, 06 Nov 2009 20:45:18 GMT

I've finally returned to feeling well most of the time. I'm skipping my PM nap today, although the fatigue can still be crushing at times. Following these Boards was especially hard due to how I was feeling physically and mentally. I hope to participate more now that my transplant seems to be working. My main problem was lack of red cell production due to residual 0+ blood fighting with my donor's A+ blood. But that's started to change. I am now making rbc's, and although still low, above transfusion levels.

Transplant #2 was much harder on me than the first. Not only did I have TBI, which did all sorts of annoying things to various body parts, I had stronger chemo drugs. I'm getting too old for this.

So now I sit and wait and stay away from sick people. At least I feel like eating now, and can have some fun gaining the weight I lost.

New to this board and journey

twondimauro@comcast.net — Sun, 13 Sep 2009 17:02:00 GMT

Hi All,

Not sure where to even start- Our lives were turned upside down on July 13th when my husband of 22 years was diagonosed with AML.

He spent 5 weeks in the hospital( Thomas Jefferson in Philadelphia) for induction chemo and has finished one round of Consoladation chemo and is home recovering. He goes for another BMB on Thursday then back in the following week. He has been receiving blood and platelet transfusions each week and is starting to feel better.He just turned 50 years old and we have 2 wonderful sons ( 15 & 18). I guess my question is what should I expect over the next few months. I don't even know where to turn anymore. I am trying so hard to keep everything together at home. I am surrounded by family, friends and our church family but still feel so alone. Is there something more I can be doing for him while he's recovering? He is subtype 5, what does that mean as far as treatments and survivor rates. Sorry I know this is rambling but just not sure what to do. He is not happy that he's not allowed out and around people. It is very hard that he can't even go to church anymore never mind work or the ball field to coach.

Any help or direction is appreciated- my prayers remain for all of you.

Dianne

Has anyone had the BMT at Jefferson in Philly?

Elderly AML M1 Patient; Palliative/Survival/Maintenance Treatment

communityreply@lls.org — Wed, 28 Oct 2009 14:03:04 GMT

Hello Everyone - I started this thread just to hopefully document (if time allows) some of the experiences that I, my sister, and my brother are currently undergoing with my elderly 87 y.o. father who was diagnosed with AML M1 in August 2009. I am going to try my best to provide information here for anyone else who is in the same situation and/or who doesn't know much yet, because we three are still trying to learn what constitutes emergencies, etc.

I would first like to thank everyone who has responded with their thoughts on the other "thank you" thread I started. Also just thanks to everyone in this online community who shares their experiences because it is a real help to someone like me who doesn't know much about living with the disease and treatments; I have included you all in my prayers.

In the past 3-4 weeks we have had some "semi- false" alarms, and the question is what actually constitutes a real emergency that requires hospitalization.

The weekend of August 22nd he was first diagnosed with AML M1 after one whole week of fever that wouldn't go away and a swollen ankle. He was admitted for a week of anti-biotics and we broke the news to him after learning about it from the doctors. He is 87 years old, his English is not the best, he is a little hard of hearing, and is slightly absent minded. He was well enough to understand the treatment recommendations that were made:

(1) inductive chemo for one week to eliminate the AML with 3 weeks observation and transfusions (1 in 6 chance of success; slightly better than 1 in 6 that he would even survive the chemo at Age 87) ... we decided against this even though he thought about it for a while. There was a good chance he wouldn't even survive the first month.

(2) Vidaza drug on outpatient basis with less frequent transfusions ... average mean survival data shows 2 years for elderly patients.

(3) Mylotarg drug on outpatient basis.

My sibs and I opted for #2 and he started his 7 day Vidaza injections right then. His transfusions have been occurring approximately every two weeks. He underwent 2 rounds with Round 3 scheduled to occur in about 10 days.

Two weeks ago, my dad had his first neutropenic fever right after a transfusion and we weren't sure if that hospitalization was "the one". He was uncomfortable in a feverish way when the Tylenol stopped working (every 12 hours), not to mention constant interruptions of sleep by the observing nurses and/or blood draws, etc. After about a week he finally went 24 hours with no fever, blood cultures identified no known infections, they decided to give him a transfusion while he was there, and for the past 1.5 weeks his blood counts have been good and he has been at home.

Eventually we figured out that fever, fluctuating temperatures, BP, etc. occurs to leukemia patients, so we are trying to have him stay at home as much as possible where he is much more comfortable. If he has elevated temperature near 100 (hasn't happened yet again, thank God) ... administer Tylenol and see if it lasts more than 24 hours. He avoids going outside and has few visitors ... we all stay away if sick.

Part of the problem is that he and my mother are immigrants and do not easily understand English. They rely on us (their children) to direct and inform them, not to mention drive them where they need to go (my mother does not drive). We try to explain as best as we can but it is troubling because we have to decide how much to tell them. He also sometimes forgets what we explain so we have to repeat ourselves. In addition, he has never been much of a talker so it's very difficult to figure out what he's thinking/ feeling.

We basically decided to tell him this current pattern of Vidaza and transfusions is going to give him "more time", possibly more years (which is not really a lie based on the Vidaza survival information) ... just that his lifestyle is now going to be different. He needs to be more of a shut-in and his daily routine and diet have been changed. I don't think he really minds staying in. Where others would be bored, he never seems to complain except somewhere he may get itchy that he can't really do his household maintenance any more. Otherwise he actually enjoys having the freedom to nap whenever he feels like it.

Anyway we check in daily and have informed him and my mother that the signs of trouble are pains and an elevated temperature over 100. Otherwise if he feels relatively well, he should just remain comfortable/ relaxing until his next appointment(s) with the hematologist, transfusion, and/or Vidaza injection.

I hope this thread can help people and I welcome anyone's thoughts or recommendations if they have any experience with palliative/ survival/ maintenance of elderly AML patients.

Thank you and may God bless you all. John

Any AML Survivors please post here

communityreply@lls.org — Sun, 19 Apr 2009 21:16:49 GMT

Thought I would start a thread about people who have survived the horrible disease AML. I am sure it can give people hope as it did with me on the other board.

Please feel free to include your sex, age and how long in remission.

Thanks to all. xxxxx

AML transplant... Thanks to all of you.

communityreply@lls.org — Fri, 14 Aug 2009 01:08:05 GMT

Greetings everyone, I went through a MUD and was inpatient from July 1 to July 23rd. They aren't certain, but they believe my recovery probably tied their record as I was released on D+14. I could have been out on D+12, but they didn't anticipate that the new marrow would graft so quickly and never switched me to oral tac in time to get proper levels established. I also had 2 birthdays in July, the transplant date and my normal one! I guess my experience gives me a strong reason to take the week of the 4th off every year to go someplace nice!

Anyway, I wanted to thank all of you for your support. I never wrote, but spent a good amount of time here reading people's thoughtful responses to others. Also, many Bing/Google searches tend to end up here when you are curious about transplant related issues.

About me... Male, early 30s. My donor, female, late 30s, 10/10. Blood type was O+, now A+. My diagnosis, AML M0. Early February 2009. Treated at San Francisco after a referral from my local oncologist who wasn't successful against the cancer. I had two failed induction rounds. Fortunately I'm FLT3 negative (whichever was the good one in case I flipped them). UC managed to spare my life in late March/April with their strongest non-myleoablative chemotherapy. They found a bunch of donors right away, prior to my initial discharge (I was in the hospital 12 weeks or so the first time). A 10/10 match was located later, a couple weeks after discharge.

Originally was going to have a transplant early June (only 4 weeks after first discharge). Unfortunately I came down with a myco infection and needed surgical debridement, so they put things on hold. Sadly I developed Cutis the day following my release, but there was still no marrow infiltration (somehow, after 2 failed inductions elsewhere, they managed a complete remission). The downside is that they used ototoxic antibiotics for the myco infection, so my hearing is presently failing. Worst case I'll need implants, best case it will recover once the antibiotic levels in the cochlea zero-out.

My conditioning regimen was Bu/Flu. High dosages of both. I looked at the pharmacology sheets, and I think I calculated the BU dosage at 38-40x that recommended by the FDA for chronic leukemia. I didn't need to experience radiation. Within a week of the chemo, the cutis melted away (hyperpigmentation took longer to resolve). I'm not sure what to think of the Bu. They also mentioned that the two drug conditioning regimen was actually more potent than the 3 drug combo (which I assume was AraC + Bu + Flu, but I never asked the specifics).

Presently I am utterly paranoid by every bump on my skin, but the HemOnc people aren't concerned. I'm also showing a totally normal marrow at D+30. WBC is 6.4 as of today, still anemic, platelets pretty much 50th percentile (maybe a bit lower), they seem to float between 230-300. I seem to be dealing with stage 1 GVH, which is great because I read a medical journal that showed stage 2 GVH/GVL and later resulted in only a 20% mortality rate for high-risk patients. Since the HemOnc guys seem to agree, they are keeping my tac levels very low. As of present I have a reddish face and forehead and have an urge to scratch the noggin almost constantly.

Other things. I had shingles, ear infection (prior to hearing loss), fungal pneumonia, bacterial lung infiltration (the myco), and discovered the leukemia when I went in for what I thought was a sinus infection. This year has been awful. However, perhaps I "paid my dues" with the first 3 rounds, and maybe that's why the transplant went so well.

Other things... I'm a huge Lance Armstrong fan and spent the month of July watching the TdF over my SlingBox from my hospital room.

Possible mid treatment relapse - any idea's?

communityreply@lls.org — Thu, 04 Jun 2009 17:18:34 GMT

Hi all,

I have posted before regarding my dad who has relapsed AML.

He relapsed in Jan and started another induction to be followed by 2 consol's (previous treatment was 1 induct & 3 consols, relapsed after 13 months). He had the induction and was once again in remission. He finished the 2nd round 3 weeks ago and is now out of hospital, theory is that once he is strong enough and bloods risen sufficiently he will go back fo the final round. He has been for 2 check ups where his blood counts have stayed the same, yesterday he attended another check up and his counts have dropped, he looks pale, he feels tired and weak - we all fear the worst, this would mean he had relapsed mid treatment. The consultant has suggested that he would need to seek advice as to what they would do if this were the case.

He has been for a biopsy today and we all keep everything crossed that it is a blip and his blood is suppressed for good reason and not for relapse.

Does anyone have any experience of delayed rising blood counts and/or situations where a change of direction is needed for treatment?

Thanks for your help.

Dean's journey continues....

bwarren@aep.com — Mon, 06 Apr 2009 16:47:44 GMT

Hello LLS friends. I'm trying to create a new thread for Dean's journey rather than try and copy everything over from the past 4 years. For those who might not know Dean's history, here are the major highlights. He was diagnosed with AML on 12-28-04 and went in complete remission with his first induction. He had an MRSA abcess between the muscle & bone of his arm in Feb. 2005, had 6 rounds of consolidation from May - Oct. 2005 at M. D. Anderson, and relapsed in May 2006. Following his relapse Dean was very ill with fungal pneumonia, MRSA in his blood & lungs and they didn't expect him to make it. Fortunately he recovered enough to undergo an ALLO SCT (unrelated donor, one antigen mismatch) on 10-10-06, had acute GVH of the skin & gut, major emergency gallbladder surgery in April 2007, a long hospitalization (3 months) with steroid refractory GVH of the gut in April-June 2008, and multiple pneumonias and other complications along the way. Like many here, I could write a book but these are just the brief highlights.

For those who've been following Dean's story, here's the latest update from his Caringbridge site at...... http://www.caringbridge.org/visit/deanwarren

It's been quite a while since I've updated which is usually good news. Things have been pretty quiet with Dean compared to where we were this time last year. Right now Dean is still having the itching off & on even though he's been off the opiates for about 6 weeks. It's not as bad as it was a few months ago but it definitely has not gone away completely like we had hoped. The swelling and soreness in his mouth from the HSV is completely gone now that he's back on the Valtrex, and the swelling in his right leg is also gone completely as long as he stays hydrated.

Right now our main problem is that Dean's blood sugar seems to be going back up again even though he isn't on any steroids. During the past 2-3 months it's been around 200 even fasting (normal is 70 - 110) and last week when Dean was at Dr. Moore's office (his local oncologist), his blood sugar was 389. Dr. Moore was concerned about the trend and he wanted Dean to see an internist ASAP. They made him an appointment with Dr. Nicholls on Friday of last week. I gave Dean & his Dad a copy of Dean's "brief" 5-page medical history (ha! ha!) and Dr. Nicholls and his nurse asked tons of questions to get up to speed on Dean's condition. We were very impressed with Dr. Nicholls' knowledge, caring attitude, and willingness to be available to us for questions anytime. We later found out that Jerry (our son) goes to church with Dr. Nicholls and he couldn't say enough about what a fine man Dr. Nicholls is, so we feel very blessed to have Dr. Nicholls as another important part of Dean's medical team. As it turns out, Dean is now back on insulin again which he really wasn't too thrilled about. Before, we always looked at the diabetes as termporary because it was steroid induced, and Dean's blood sugar always went back to normal once Dean got off the steroids. It looks like this may be more long term now so I guess we'll have to learn to live with it.

I have a small bit of news for everyone....we now have a new 4-legged addition to our family. She's a 3-month old apricot toy poodle named Sophie. For those of you who know Dean well, if there's anything that can put a smile on his face, it's a puppy! We had to have one of our Jack Russels put to sleep around Christmas last year and that was pretty hard. We've been thinking about getting another dog and decided to go ahead. We wanted to wait until Dean was doing well enough to take care of one and he seems to be doing great with her. I think it'll actually be really good for Dean to have something to take care of and keep him occupied instead of sitting at home thinking about how bad high might feel. I've posted a few pictures of Sophie as well as pictures of our new grandson Jonah too....Gotta keep doing my Grandmommie thing you know!!! The new Caringbridge now has room for more photos so be sure to click on the next page in the photo section to see the new photos.

Anyway, that about it for now. We're scheduled to go back to Houston on April 20th for a follow-up with Dr. Andersson, Dean's transplant doc. Hopefully everything will keep going well. Thank you all again so much for your continued love and support.....Betsy

For my wife, A.L.L. has conquered Chemo(6months), then sibling SCT, now DLI. Fight No.4 Starts Tomorrow.

communityreply@lls.org — Thu, 14 May 2009 14:04:17 GMT

Is anyone familiar with specific chemotheryapy drugs that involve cumulative lifetime dose limits? Our team of doctors informed us yesterday of the relapse of ALL and of the limited options we have because my wife has received a lifetime cululative amount of Adriomyacin & Donarubicin of 320mg/meter^2. This directly relates to how much the heart muscle can tolorate over it's muscle surface area and mass. We were told that at 400mg/meter^2 they become very concerned of life long and life-shortening consequences to the heart and at 450mg/meter^2 it's nearly a guarantee of heart failure.

We find ourselves at a crossroads of which the chemo that works so well for her in putting the cancer into remission is becoming a limited resource. We are attempting a 4th fight at this monster but the limited chemo she will receive for this attempt will still raise her level to 440mg/meter^2 of the two medicines combined.

If anyone remembers me from before they will recall I was in a HUGE battle with her team of 4 doctors about whether to do an unrelated SCT last fall or the DLI. I wanted the SCT as it was clear to me that for ALL patients the DLI has 0% long term success. My wife, yesterday, was shocked to hear from her doctors that a transplant, now, is most likely not possible. I fought, and fought, and fought with her and the team about this and her own doctor team was split 2 for and 2 against. I am so upset and sad at the same time I can't stand it. I know hindsight is 20-20, but I and at least 2 other doctors had major foresight into this. Ultimately it was her choice, and I understand that, but to hear her yesterday say that she did not understand or expect the current situation, after all the information that was presented in the past, is heartbreaking.............. The doctor also said that insurance most likely will not approve another SCT as the DLI is normally considered a second SCT in financial terms - this is something none of us were advised in the beginning.......

My daughter turns 5 this month, my son turns 7 in August - their lives are going to be ruined. I'm so freakin' handicapped myself that I just don't know what to do anymore. After 3 years of battling we have exhausted all of our financial and "people" resources. Add the crapy economy to the mix and the fact that my office downsized all the way to one engineer (me - which is at least good that I have a job) that I'm working 10+ hours a day to make ends meet. how, How, HOW do I raise my children sucessfully on my own when I'm so exhausted that I can barely crawly into bed after working all day???

Please pray for my wife. She has rallied SO well in the past treatments.

SCT in two weeks

communityreply@lls.org — Thu, 29 Oct 2009 20:23:50 GMT

I am 55 yr old and was diagnosed with AML 7/2/09 and failed two inductions. Other than losing my hair I did not have any adverse effects from the chemo. After a third induction with MEC in Sept I am in remission. A MUD allo SCT is scheduled for the 2nd week in Nov. I am hopeful, excited and scared (really scared) all at the same time. My transplant doctor has asked me to participate in two studies 1) low intensity transplant using lower doses of chemo (Fludarabine, Busulfan with TBI) and 2) using Enbrel and ECP tp prevent serious GVHD. I can hardly wrap my head around the pitfalls of transplant and high rate of remission much less decide about clinical trials. Hopefully my Dr appt on Mon will help illuminate my decision. Right now I feel better than I have since June. Knowing I'm going to get sicker to get better is difficult to accept. I will be at University of Michigan and know my level of care will be excellent. Reading this community's posts gives me strength and hope. You are amazing. I hope I can manage as well.

GVH -- Updated 9/21/09

tex_silver@yahoo.com — Thu, 10 Sep 2009 17:31:35 GMT

New information added...see post below 9/11 1:13 pm (MDT).

I've already touched on most of what I found out about GVH in various posts, but wanted to start a separate thread to talk about it. I'm finding that posting this stuff and responding to comments and questions is helping me sort some things out and get them more secure in my head. So it's good for me; hope it's not boring everyone else.

First, I secured my information that I did, indeed, go off my immune suppressants only two months before we moved to CO. I've believed that was the case, remembered my concern when things started happening in relation to having come off suppression therapy so soon. But in retrospect I couldn't believe I was stupid enough to move and change docs so quickly after discontinuing the therapy.

Again, they didn't run any specific tests for GVH. But there were plenty of indicators all of which put together pointed towards likely GVH. So they're putting me back on cyclosporine and we'll see if things improve.

So, what did I learn? GVH can, indeed, cause fatigue. I did not know this at all. Dr Warren (Hooty -- seriously) is hoping restarting the immune suppression will help give me some energy.

I have heard of things thickening with GVH but it never occured to it had happened to me or happend where it did. I have been able to feel a ridge in my lower abdomen for about a year. I've not done a lot of crunches due to my back and figured I was actually feeling lower bowel through thin muscles.

Surprise! It's a thickening of subcutaneous tissue (they wouldn't exactly say "fat" but not sure what else it could be). There were a couple of other areas -- I can't remember where -- they found thickening. But the big one was one of the reasons they wanted to have a CT done. Of everything, it's the one thing they think makes the most convincing single argument for GVH.

They also noted that my hair had gotten a little thinner...maybe even patchy. The nurse thought she saw GVH in my mouth but the oral medicine doc wasn't sure if it was GVH or simply my teeth rubbing against my inner cheek.

Of course we've spoken here about the possibility that GVH could have caused my medical mystery (wonky counts). They weren't certain but it's another thing we're putting on the Let's See What Happens List.

The opthalmologist didn't actually say I had GVH in the eyes, only that my eyes were dry and my response to the test where they put the litmus paper in your eyes was "pathetic." As this was the first thing to start happening after I went off my immune suppressants, I can only suspect it's a continuation of my previous eye GVH.

So, without going to my notes, that's what I remember. I will check the notes to see ifr I missed anything.

Thanks for reading.

anyone treated with just rituxan first?

communityreply@lls.org — Thu, 17 Sep 2009 13:02:28 GMT

Hi. My dr is talking about treating me with Rituxan first. I am close to being in the watch and wait stage but it is in my bone marrow. He is saying to treat it with Rituxan but he didn't say anything about chemo and I can't find any info about using that only? anyone know?

Suggestions to teach a 2.5 year old to swallow pills?

communityreply@lls.org — Tue, 17 Nov 2009 06:06:58 GMT

Hello All. My 2.5 year old son was DX in April with ALL pre-B. Today we just started LTM, so we need to give him a pill or two every night. Right now we are mashing up the tablets and putting them in sorbet (non citrus and non dairy) or ice cream, but life would be much easier if he could just swallow the tablet with water. Does anyone have any recommendations for how to teach my son to swallow a nasty tasting pill whole? Thanks!

Elliott has passed

communityreply@lls.org — Sun, 01 Nov 2009 14:37:04 GMT

Elliott passed away yesterday at 6:04pm. He fought to the end.

Protocol Errors

communityreply@lls.org — Fri, 13 Nov 2009 00:36:03 GMT

I just wanted to let you guys know, that even some of our road maps may have errors on them. We are on AALL0232, and today we were at clinic for an LP on day 29 of maintenance. I questioned our np as to why he was supposed to also receive his PO MTX on the same day that he receives IT MTX (as it says on our road map--but seemed a little much to me). Sure enough, she called and verified that that is in fact an error for RER kids, and that they should not receive PO MTX on the same day as an LP.

So frustrating and makes me feel insecure when these things pop up, like I constantly have to be on top of every little thing...

Ben's Story from now on ...

communityreply@lls.org — Sat, 25 Apr 2009 17:13:32 GMT

I've decided to start a new thread with a more generic title so that even though the topic may change, it will just be the story of Ben and me from now on.

In my Hackensack thread, I mentioned that Ben's brother was probably a match. We will know for sure after his test results are in. What's mysterious is why our first transplant center did not consider using him as the donor back in 2007. We were originally told that the first choice of transplant would be a sibling match, and if that was not to be, that a auto SCT would be the transplant of choice.

Ben has two siblings. We were told back in probably October of 2007 that his sister was no match at all, and that while his brother's HLA markings were better, they were not good enough. So we went the auto route on February 1, 2008, and now, more than one year later, we are exploring more transplant choices since Ben now has MDS (originally dxd with aml in 2007).

When we visited MSKCC and Hackensack this month, both looked at the HLA report on Ben's brother from 2007 and said that it looked like a match but they would want to repeat the test, this time with high resolution. That's great since everyone says a sibling match is the best type of match. However, the puzzling part is why our original transplant center did not go this route.

I emailed the transplant coordinator at our original center and questioned her on this. She emailed me back to say that since we were coming in that day to see the oncologist, she wanted to talk to us. She sat down with us in the waiting room and said that at first, she could not find the report on Ben's brother, and that when she did find it, in the wrong place in Ben's file, both she and the transplant doctor reviewed it. Both of them concluded that the report from 2007 seemed to indicate that Ben's brother was a match, and they cannot remember why it would have been rejected back then. She seems to think that it was because they had mis-filed the report and thought there was only one sibling, Ben's sister.

But that is not what Ben and I remember. We remember the doctor specifically saying that Ben's brother was not a good enough match. So where are we now and why does this really matter since what was done (the auto) cannot be un-done. The reason I want to try to figure this out is because before this, we had nothing but high praise for this tranplant center and transplant doctor. Also the center is very close to our home (20 minutes).

If Ben's brother's stem cells can be used (and we don't want to go the t-cell depletion route), this means that this transplant center can now be considered as our center of choice. However, I don't want Ben to go there for the transplant if they made a mistake. I tried to further question the transplant coordinator because I thought of a possible reason why they might have rejected Ben's brother.

I am trying to find out if there is a questionnaire that the sibling or other potenial donor completes that is sent in along with the blood sample that asks about residency in another country, specifically England during the mad cow episodes. I can't imagine what made me think of this possible explanation, but my brother-in-law and his family lived in England for 6 months to a year many years ago. If that question was asked and if he lived there during that period of time, it is possible that the transplant doctor, being quite conservative, might have rejected him as a donor. I need to know that answer and will probably call the transplant coordinator because she and I don't seem to be communicating very well by email on this question.

Sorry if I have been too long-winded. Does anyone know anything about this question of residency in another country?

Thanks so much everybody,

Sue

Long time no talk.....

galpal38@hotmail.com — Sun, 15 Nov 2009 21:14:02 GMT

Hello all,

It has been a long time........ I still think about everyone here continually.......... Since they changed boards I have not been here often..... I was much more comfortable on the old boards......... But I never forget....... Just a little thought to let you know you are in my prayers and thoughts.,,,,,,,

Love,

Pat

Need help to understand.....

communityreply@lls.org — Tue, 17 Nov 2009 18:46:34 GMT

Todd's count's are coming up pretty quickly.I did not want to post because for some reason I'm scared about jinxing him....if anyone can understand.His wbc is 2.4 up from 1.7 yesterday.His platlet's and rbc's are coming up pretty fast also.However...when I looked at his blood work I seen next to blasts-3.Scared me.Now I'm just learning the rope's around here but that was in his peripheral blood.I'm am praying that those blast cells are a result of marrow regeneration and the adult(healthy) cells pushing them out as they try to get into the blood stream.Please can someone clarify this for me??The Doc is talking of discharging him if the marrow is clean.Has anyone had any knowledge of something like this??

Six Years and Going

tex_silver@yahoo.com — Sat, 31 Oct 2009 19:01:09 GMT

Six years ago today, I was informed by my doctor that I had AML. She didn't know the subtype, yet. She didn't know much except I was having a Hickman installed that afternoon and on Monday we'd start chemo.

Needless to say that was the most bizarre Halloween of my life. I'd just sent my wife to work telling her there wasn't any reason to hang around. Thankfully her boss was also a minister and I was able to call him and ask how did I get her back to tell her.

That began a very long and quite strange trip. I relapsed, had a transplant. Well, most of you know the story.

But the imorrtant thing, to me anyway, is that six years later, I'm still here to tell about it. For those of you who are just starting or in the middle of dealing with this disease, take heart. I don't know if I'm "cured." there's debate about using that term. But today I am cancer free. And I figure I've got a lot of years left.

This stuff is not death sentence. There's a very good chance you'll be celebrating your sixth anniversary, too.

Blessings

What is life expectancy with Gleevec?

communityreply@lls.org — Wed, 04 Nov 2009 18:41:54 GMT

Hello everyone! I'm so glad to have found this site; I'm finally hearing the real stories on this disease. I am in denial, however, after reading your comments, I too, have many of the same side effects while on Gleevec (its only been 2 weeks). I don't recognize myself in the mirror; my eyes are swollen and bloodshot and my stomach......well, you know the rest. I am 50 and have two children and of course we are scared silly. How many years have you surrived to date, what can I expect? I want to enjoy living and don't want to think of the alternative, still quite tired and overwelmed. Thanks for your thoughts. KathyK

Experience with Treanda?

communityreply@lls.org — Tue, 07 Apr 2009 20:28:58 GMT

I am really interested in hearing from anyone who has taken or is taking Treanda. I have had my first "round" last week for the diagnosis of non-Hodgkins lymphoma (it is resistant to treatment so this is my 4th chemotheray regime). I am surprised by the fatigue I have already experienced.

Thanks for responding.

Any relapsed ALL young adults getting BMT? My (& my brother's) story... new poster

communityreply@lls.org — Sat, 14 Nov 2009 02:09:35 GMT

Hi all...

I'm trying to find some support in dealing with my brother's relapse. I'm new to posting, and found out about his relapse 2 and a half weeks ago, but waited to post as I wanted to make sure it was okay with him for me to write about him on here.

This is all really hard right now, and I find myself online a lot as I don't know what to do. I live and work outside of the US, and had actually just started at this job about a week before finding out about my brother's pre-B cell ALL diagnosis back in August 2007. He was 19 at the time, just about to turn 20. He had been having back pain all summer, getting worse, in his ribs too, etc, and nobody could figure it out. Just before I left the states for my job abroad, he got on a scale and decided the scale was off as it said he had lost something like 10 or 15 pounds. He'd also been having night sweats. Somehow, we didn't put all this together as a really bad sign, we had been focused on getting him to back doctors to figure out the back pain, and I was also focused on packing to leave the country. He didn't have recurring infections or bruising or those other typical ALL symptoms. Anyway, his primary care doc finally checked him into the hospital on August 1, and was diagnosed and started treatment on August 3. I took unpaid leave from my job, and was back in the states from mid-August to mid-November, when he seemed to be doing well enough for me to return to my job abroad. My brother was treated on a pediatric protocol, but not at a pediatric hospital (he didn't want to go to the teaching hospital and be poked and prodded by residents all the time). He had 2 years of chemo total, and was in remission after 3 weeks from the start, and never had major problems through the two years. I don't think they did MRD (minimal residual disease) testing, though, which now makes me mad, as I know it seems useful in determining risk of relapse. His major problem was back issues, with the leukemia causing a collapse of several vertebrae, for which he had kyphoplasty surgeries (very rare in a 20 year old).

So, now to the current day. I was back in the states for 10 days on my summer holiday in early September this year, and my brother called me on the phone (he was now back at college 2 hours away) and told me his back was hurting, and his hip, and it felt the same as two years ago. It totally freaked me out, and I was in panic mode for days. Finally, the doc (his new oncologist, 2 hours away at school) insisted his blood counts were staying the same, and that there were other explanations for the pain. We all relaxed (but just a little). Well, it kept bothering him on and off, nobody wanted to give him a biopsy as his blood counts weren't changing, and finally at the end of October he did get a biopsy and it was positive - the leukemia had relapsed. My family and I (and my brother of course) are devastated, and I'm mad as hell too. His original oncologist kind of acted like it was all going to be fine before, giving him high numbers for chance of the leukemia being gone, but I feel in my mind (and have always felt) like that was overly optimistic - just due to his age at diagnosis, I feel like he should have been treated as a higher-risk patient. So, now, he's quit school again after only half a semester back, he's back with my parents, and at the teaching hospital where they can actually do bone marrow transplants, with a new hem/onc who can do them. Now trying to get into remission, and on the COG AALL01P2 protocol for relapsed ALL. It has 3 rounds of 35 days of chemo, which if it's on schedule would have that finishing in mid February. And a bone marrow/ stem cell transplant after that. I'm only a 3/6 match, and we don't have any other siblings, so we'll be looking for an unrelated donor. I think his HLA type might be a little weird, so I'm not sure how long it's going to take to try to find a donor, and I guess there are always other options like cord blood, but we'd probably have to take him to a different transplant center if he needed a more than 9/10 mismatch or a cord blood transplant, as they don't really do those where he is.

So, this is all ridiculously stressful, and so unfair to him, and if I were in the states I'd be going to Gilda's club for support, but where I am I have none. So I hope to get some from these boards. I've been reading a lot, and you guys really help each other out. Oh, and my other stress is that my partner of 9 years and I got married last Christmas (thank god my brother was okay and there), but my husband isn't American. So, we were planning on applying for his greencard now, and heading back to the states in a year, but that's all thrown up in the air since if I'm not here, we can't apply through the US embassy here. But if we both quit our jobs here now, and head back to the states, we could be losing out on end-of-contract bonuses which we were counting on to be savings to get us started in the US next year, and if he comes to the states now, he won't be able to work and we'll have a long process to apply for his greencard there. But I also am so afraid of going back myself in 2 months or so to help support my brother and family (they will definitely need support during the transplant process) without having my husband there, and potentially being away from my husband for 8 months or so...

Anyway, i assume nobody has experience with this last problem of mine, but I just wanted to tell my story and introduce myself, and I'm sure I'll be posting more as I have more questions about things for people who have been through this experience.

sara

Urgent: Adam Hess (Trudy's boy)

communityreply@lls.org — Sun, 06 Sep 2009 19:42:51 GMT

Just wanted to let everyone know i got an urgent carepages update for adam in my email today and when i went to care pages this is what it says.

Adam Hess May 19th, 1985 - Sept 4th, 2009

There are no more words left in me
I have many more tears left to cry
My precious son

I have no idea what happened the last entry was august 29th and said adam was in remission. I am shocked and so saddened for Trudy, adams brother (transplant donar), sister and father.

For those that remember trudy and adam, his carepages is his name.

Trudy, if you come on here, i am so sorry, my heart breaks for you.

platelets going down with cellcept and/or steroids

communityreply@lls.org — Sat, 10 Oct 2009 17:21:16 GMT

My husband Glenn is at day +71 from his SCT for relapsed AML. For the past 3 weeks his platelets have been dropping. They were dropping before the cellcept- but showed a signficant drop after that. He's been on steroids for a month now. (100 mg prednisone daily- now tapering down) and they added cellcept because he was still pink from GVHD of the skin. Our days have been relatively "uneventful"- (thankfully so) and Glenn has been feeling pretty well. This morning he did have a slightly bloody tissue from when he blew his nose. (not ongoing bloody nose) He did call the practioner- but we haven't heard anything back yet. Just wanted to ask if any of you have any experience with this course of treatment. I know I've read that platelets can be "all over the place" and I do absolutely trust the oncologist- I just wanted some real life experience to bang around in my head as I try to push away fears of the obvious. thanks!

6 Yr Old Daughter Hospitalized and Severely Neutropenic

communityreply@lls.org — Thu, 12 Nov 2009 00:05:37 GMT

Hi, Everybody! My name is Kelly and I have a 6yr old daughter who is battling some troubling symptoms. My husband and I are very concerned and am hoping you all might be able to help me understand some of what is going on. She's are youngest, and we've never experienced anything like this before. Any input or advice would be great!

Our daughter has been sick on and off for about 9 weeks. We never really thought much of it. She has had fevers on and off with no other symptoms, but they were low grade (99.5-101). She has also missed school at least 6 times for a few days at a time, with what we thought were viruses accompanied by higher fevers (102-103.5). From Oct 26 to Nov 7, she missed school three separate times, and the 3rd time I immediately took her to the doctor. In the doctors office she was running a low grade fever(99), had a rash, a bad cough, and was having trouble walking. Her pediatrician admitted her to the hospital and ordered a chest xray and a myriad of bloodwork. She came back negative for strep and influenza at first, but later that day, a repeat test came back positive for strep. She had a positive M Pneumo IGM and her IGG came back slightly high. She also had a high CPK level of 331 ( normal values per hospital lab 21-215). She had a urinary track infection and a high PH. Her CBC was the most troubling. Her hemoglobin/hematocrit was low, and her white blood cell count was 2100. Her lymphocytes and monocytes were high, but her neutrophils were low, at 600. By the next morning, after very strong IV antibiotics, her total WBC had dropped even lower, and her absolute neutrophils were at 300! We are so frightened. She has had many symptoms of a much bigger problem for a long time and we didn't put anything together until now. Night sweats, so bad that she needs a bath in the morning, extreme fatigue, the ongoing low grade fevers, and just generally not feeling well. She has complained of headaches and hasn't had a great appetite for several weeks. She has lost weight, and is very pale. I feel horrible! I have 4 other daughters and none of them have been sick. They are all in school with her, but they all had perfect attendance. I feel like I should have known something was wrong. My husband and I both have a strong family history of Leukemia, and both Hodgkins and non-Hodgkins Lymphoma. Our Pediatrician is concerned and has put her back at home with us but she is basically isolated. She has to wear a mask and he has said she will be out of school for at least 2 more weeks or until we find out why this has happened. We are to have no visitors for awhile, and she is not allowed to go anywhere except the dr's office. He is looking at Leukemia, but he says we need to be patient. We're waiting for the latest CBC differential results. Am I overreacting? I am a mess. I'm not sleeping well and I feel like it's taking forever to find out. Am I wrong to think this is not just a simple infection? Our doctor doesn't act like he thinks it is. I'm assuming the worst, and maybe I'm paranoid, but I don't know how to feel any different.

Does anyone have any ideas, any questions I should ask? Anybody have any Idea why her Neutrophils would drop so low when her other WCB's were high? Why would here CPK be elevated? She's never had heart problems. And, is being anemic along with the low WBC and neutropenia significant? I just figured you might be able to give me info in a way I can understand. I feel like the doctor isn't telling me everything, and then again, I'm not sure what I am looking to hear. I guess I just need to understand the possibilities better.

Thank You!

New biopsy after 3 years remission

communityreply@lls.org — Wed, 18 Nov 2009 21:52:22 GMT

On Friday the 13th, I had a breast biopsy and am still waiting for the results. Because of my history with DLBCL, the surgeon has requested addtional testing. Now I'm going nuts with the "what if's". Any thoughts?

Judy

Nerve wracking and so frustrated!

communityreply@lls.org — Mon, 16 Nov 2009 22:55:51 GMT

Donavynn had a fever yesterday so we went to the local ER they drew cultures and labs, gave him a dose of antibiotics and we were sent home b/c his ANC was 1200. Today he had clinic for Erwinia. His temp has been fluctuating between normal and like 100.5, so I asked if they would draw labs again to see if he does spike what they want us to do. The doc said no, that we would have to go to the ER if he spikes and go from there which basically pissed me off b/c we live 2 hrs from the hospital and we were there this morning, they could have at least done that to help me relax. Consequently my stomach has been in knots all day as his temp continues to fluctuate but not reach high enough for them to take notice. I'm still concerned however b/c his temp is still rising it may not reach that 101.5 marker but it keeps going above normal. So I'm irritated and frustrated and want some answers. We just got home Friday from his radiation (he had 8 days of cranial radiation) prior to that stay he was in for a fever so he went directly from the hospital to the Ronald McDonald house and now we may be heading back up tonight. I just wish he could catch a break. He has had a cough for 2 months that just won't let up, which is pretty typical for him during the winter months. I'm just so irritated at this point I want to scream

Epidemiology of childhood cancer??

communityreply@lls.org — Tue, 14 Apr 2009 14:42:56 GMT

The forums usually have very concrete questions and answers, so I thought that I would throw out a more abstract discussion that I have not seen posted anywhere........

Since Matthew is at school today, I have a bit of time to post a question that has been absolutely driving me to insanity for the last two years. Since this is a large forum of parents with children who have cancer, I figured, it's a good place to get a lot of opinions. Every breathing moment, consciously and subconsciously, I ask myself, how did my child develop this horrible disease (in my sons's case - t-cell ALL) What happened to the perfect system of cells that all of a sudden decided to go and get so confused and screwed up???? I have researched theories, yet none seem to give me answers to my questions, as every child's case is different. Yet it is shown that , for example, ALL has its highest incidence in 3-5 year old BOYS - Why? Next time you go to your clinics, take a look around and notice the amount of small boys, it's incredible.

Since I have six other children who are perfectly healthy, I often analyse what was done differently about the last one. The only varying factors are that he may have been exposed to more EMF due to a damn portable phone I had close to his crib (which is now in the garbage); a new plastic crib mattress (which really smelled awful of plastic - we all know how bad plastics are); his toddler bed used to back onto a wall which contained a 240volt dryer plug (?- more EMF) and he was the only one of my kids who had a second ultrasound (which I know that more and more mothers are being told to get while pregnant). The last factor which I also wonder about is that a few weeks before he was conceived, my husband was spraying some fruit trees with regular insecticides - which we don't routinely use - and during this application, the pump he was using broke, leaving him with a pretty good mist of poisons blowing up in his face, which bothered his lungs for the next few months. Other than the above, I can think of nothing else as all the other known factors which may/may not influence the incidences of cancer had already been addressed, i.e. breastfeeding, excellent diet, no vaccinations, no other meds, no electrial tower, cell phone waves, microwaves, etc., no use of harsh household chemicals, no wireless applications in the home whatsoever, etc.,..............or is this all just a random event which occurred with all of our kids?????? And the funny thing to me is that no one at the hospital really seems to care how it comes about as we are never asked any questions about lifestyle, diet, environment, etc. after our kids get diagnosed....

Anyone else wonder ????Can we prevent it from coming back??????Or do we just wait out the rest of our lives simply day by day????The fear of the unknown is a terrible way to live.......especially when it comes to our children........

Any thoughts, or should I just stop wondering ???

]

Latest Checkup...Not so perfect results

communityreply@lls.org — Thu, 17 Sep 2009 16:50:13 GMT

Yesterday I finished my round of tests and physical for my first 6 monthly checkup. I had been having them every 4 months but this was the first 6 monthly one. I have been in remmission 2 1/2 years post treatment. In the words of James Brown "I feel good.." or I felt good anyway. I have been very well and went back home to the UK in June and have my ticket for a return trip in December but life sometimes says 'no no billy'. Perhaps the lesson in not looking to far ahead or getting ahead of yourself.

Anyway after good blood results and the physical was going well but just at the end there was a "oh' from the HEM. He then checked again. His physicals are very thorough and dig well into the old bod which has been OK with me. In this case after a second check he found a small (not sure what small represents) but small lump under my left armpit and very deep into my body. He felt it was musclular but he cannot be sure so he is ordering a CT Scan and while I am there I may as well have a full torso CT scan. I am not concerned that he is ording a full torso scan more that he found something. I get the same checkup all the time and up until now nothing was found. Of course it can be anything at this point and the HEM is being cautious and I am grateful for that. Better to know now if it is bad news than wait until it is worse. I am trying to be positive and succeeding to some degree but not 100%.

On top of this last night one of my daughter's in law who has CLL and has been on W&W for about 4 years, now tells me that her tests yesterday showed that her Nuets were low and small lumps were found in her neck and under one armpit; same side of the body. CT Scan is being setup for her. To make it more confusing she had a round of pneumonia a couple of months back and the body could still have some residual infection but again the signs are not good. If that is not enought one of my sons tells me that the urologist is setting him up for a prostate biospy. Again his symptons could be other than cancer but there are still symptoms enough for a biopsy.

Sorry to go on a bit but it can be somewhat overwhelming sometimes. Working is good in that it takes my mind off things for a bit but work now requires more mental effort that it did last week.

Keep well

Regards

Roy

"The night before transplant poem"

pamyrn@yahoo.com — Tue, 17 Nov 2009 02:28:03 GMT

Hey everyone. Sorry I have made my way away from this board but every so often just lurk a bit. Just had my 4.5yr check up post MDS/AML/SCT and all counts GREAT! Cannot wait to see my 5yr in May.

I am following a journal of this young gal who is having her transplant tomorrow. I would love to send her the poem "The night before transplant". Do any of you have this? I use to keep in "word" but my computer was recently reformatted and Iost it. I would so appreciate it if any of you have it. If you do I need it soon (nothing like waiting for the last few hours)!!

Thx Pam

Disney internship

communityreply@lls.org — Fri, 06 Nov 2009 19:42:07 GMT

Hiya all! Sorry i've popped out of the boards again.... school, work, home, OH MY! I think I need a new theme song for my life.

I will be graduating in December, as some of you know, with my bachelors degree in accounting. I have been very depressed that I haven't received any calls or emails about all the resumes that I had been sending out (and I sent out quite a lot!). So I revamped, revised, and re-anything'd my resume and application answers. Still no luck.... Until I started thinking, "where would I like to work?". I figured I could pick a few companies and just annoy them until they gave me at least an interview. I live in the Tampa Bay area, and I love entertainment stuff. So I looked at Universal Studios in Orlando. No luck. So I thought, lemme try Disney. I checked their website and lo and behold they have an internship program! The deadline was like in two days so I quickly applied for 5 different accounting/finance internships. I got a call like in 2 days! They set up a phone interview with me and I think it went awesomely. Then 5 days after that, I got a call to set up a second interview with the accounting department! That was October 27th. I think that one went well too and the guy said I would know by early November if I got the internship.

Getting a Disney internship would be a great learning experience and great on my resume since I have NO accounting experience whatsoever! There are several downsides to it though, like travel. It is 94 miles one way to Disney from my house and it goes along an extremely busy interstate that is always backed up with accidents and such. I have tried to figure out the pay but there isn't much information out there. All I have seen is it is between 9 and 13 dollars an hour which is HORRIBLE because I get paid that much right now. The point is not the pay, it is the experience and stuff. It also does not have any benfits like medical... I would have to take the government up on their offer of medicare, I don't like that option but I will do what I have to to stay insured.

Then, while going through all that, I got a call from the Florida Department of Revenue that they wanted to set up an interview! My depressed mood was starting to lift! I had applied for that job actually on my birthday in May (who says the government moves quickly? I sure dont!). So I set up the interview. Then I get a call saying there was a mixup, that they couldn't actually consider me for the job because I have to have my degree in hand... and they needed to fill the position before I graduate. But they said they would interview me anyways just in case there is another opening after I graduate. I still wanted to interview because YOU NEVER KNOW!

Well, YOU NEVER KNOW, came true. The interview went great. It was a panel interview with three people who had been with the FLDR for 30 years each. One of them is involved with the American Cancer Society's Relay For Life (he didn't say why or anything). So I got a call a few days later saying that they had looked further into it and they can actually consider me after all because my graduation day is so close (December 12th). They just need a letter from the University stating that I meet all requirements to graduate which they will get to me by Wednesday.

So things are looking up!

I think the Disney job would be such an adventure (I still haven't been to any Disney park, and one of the perks is I would get in free to all Disney parks!) and I just love to learn... However, I don't think I could afford that job. The lack of money would put a lot of stress on my husband and I and I don't really want anymore stress. What is killing me is not knowing exactly how much I would be getting paid... I like to plan, to know things but I just have to trust God and let him be the planner.

I am afraid that if both fall through, that I will be back to my depressed mood and distract me from actually getting the grades to graduate. But I just need to focus on school, and let the other happen as they will. Nothing more I can do for either job, I have sent out the thank you letters for the interviews and gotten them all the documentation I can.

So now I need to get back to homework! Love you all!

Dawn

Has anyone used OU Medical for SCT???

communityreply@lls.org — Wed, 18 Nov 2009 16:07:38 GMT

Heas anyone used OU Medical for SCT or know anything about it?

maintenance and thinning hair...

communityreply@lls.org — Tue, 17 Nov 2009 13:14:28 GMT

my son seems to be losing his hair and we are 5 months into maintenance. It was growing back so thick and even had natural highlights in it. He wanted to get a trim and ever since then his hair seems to be thinning. Anyone else experience this? My son is in high school and is not happy about this. Our doctor never told us this could happen so we were caught off guard about this.

My son wants to know if he loses it again will it come back right away? Would love to hear your experiences about this. How long did hair loss last, if it thinned did it get thick again? Thanks for your input.

Michelle

Survivors: What are some controllable factors that you believe contribute to your survival?

aimeefagan@yahoo.com — Tue, 12 May 2009 20:58:55 GMT

Did you try anti-cancer nutrition? Juicing? Herbal supplements? Artemisinin? Exercise? Meditation? Yoga? Faith?

What factors do you believe contributed beyond traditional medicine?

Thanks for your responses!

Here We Go Won't Be Long

communityreply@lls.org — Fri, 20 Nov 2009 03:31:39 GMT

Went to visit my transplant doctor today and he filled me in on my situation about my CML with the t315i mutation.

He can't find a donor but he has found double cords which he said where 5/6 typing but I don't know if that's is good?

he doesn't mind the cord because of my age 49, hight which is 1.36 meters and weight 71 kilo's.

He has told me that he has to get on top of this as soon as possible around about mid January.

I will have a few follow up's before hand and hope this all goes in the right direction.

I was going to go to the Hutch but because of all of the factor's as in it is going into winter, the plane trip from Australia, the h1n1 flu, coming back with no immune system etc, I thought I better off staying put.

Judy Needs Help

julindy122@gmail.com — Tue, 27 Oct 2009 19:02:14 GMT

Hi folks, all is well with John so don't worry. I got a letter from the LLS community that I may be removed as some complaints were written about me.Earlier I got a scam email from someone on facebook asking me to join a desktop dating site. I only acknowledged that I knew the person; did not join any dating site; obviously but the request I got was forwarded to everyone on my contact list all 268 people, some of whom are LLS friends. I didn't start anything and am very upset because a friend forwarded a nasty email about this subject to everyone on the list (joking about me on a dating site). Now that must have gotten thru to some of you and certainly to the LLS community board who was on my address list. I would appreciate support in letting LLS know I am a valuable member and contribute a great deal and have done nothing offensive deliberately. Otherwise, I will be removed. Any helpor support is appreciated; if I lose you guys, what do I do? Judy

Strange Chimerism results

communityreply@lls.org — Wed, 18 Nov 2009 02:59:09 GMT

I’ve been lurking about, trying to follow the various threads, but it’s been quite a while since I’ve posted. I’m posting now though and would like to know if anyone knows anything about what we might be dealing with now.

Today is Ben’s day +63 since his transplant, using his brothers stem cells. He has been home since September 30, and he has been doing so well. No unusual fatigue, working from home, and his counts have been pretty good, with some fluctuation. Today, they were:

Wbcs 4.4

Hgb 12.1

Platelets 186

We have been going to the clinic weekly, and with the exception of the wbcs, which stayed the same as last week, the other counts went up.

In the Hackensack study Ben is in, he gets frequent chimerism tests. He had the first one on October 13^th, and the results were 100% donor. The second chimerism test was done last Tuesday, November 10^th, and we got the results today. The chimerism results were shown between donor and host for CD3 and CD15. I may have this backwards, but I don’t think so. The CD15, something to do with granulocytes, was 93% donor, and the CD3, something to do with T-cells, was 7%. Dr. R. said he is puzzled with this 7% number since all the results a month earlier were 100%, and also because Ben seems to be doing so well and his counts are so good.

He decided to do the chimerism test again today since maybe the 7% was an error. If it is not an error, he will probably just take a watch and wait approach. Also, on day +84, December 8, Ben will get a BMB, also part of the study requirements, as well as another chimerism test.

Does anyone know anything about this?

Thanks,

Sue

Back on the Roller Coaster

communityreply@lls.org — Fri, 17 Apr 2009 10:55:32 GMT

Dear LLS friends,

I found out yesterday that the bump on my back is leukemia cutis, not a good thing. It's unusual in that it's just one spot, but nonetheless I am devastated. Yesterday I had a cbc and will go to my local oncologist next week for a bmb.

If there's no infriltration in the marrow, I will probably have electron beam radiation to the spot. My transplant doctor wasn't that encouraging that this would work, but he said to try it first before I go the typical chemo route.

I'm 19 months past transplant now, 21 months in remission. I was finally breathing a litlle freer, and then wham!

Anyone have any info on this? It's rare, and usually presents when a patient has active leukemia, although it can be a precursor to full-blown disease.

Help!

Claire's thread

john.hendershot@gmail.com — Mon, 13 Apr 2009 16:02:36 GMT

Thought I'd start a new thread since we all know Claire relapsed. Again, I want to thank everyone for all the information, kind words, and prayers. It has meant a lot to both me and Claire.

Claire is on chemo day 4 of 7. She's received all of her daunorubicine and etoposide. We've been watching her counts waiting for a change (even though we know it's too early). Her WBC count went as high as 64 before the chemo started, but has come down as low as 39, yesterday it was 42. At this point it probably doesn't mean anything, but it's something to look at and ponder.

The week has been slow, which is both good and bad. Claire has been fairly hungry all week so she's been eating very well. No real side effects yet of the chemo so that's good. I've been arriving at the hospital around 1pm and staying until 12am. Occasionally I'll spend the night, but I'm also trying to maintain sleep, food, and showers to avoid getting rundown.

Claire's pretty bored when no one is around, but I'd rather have bored than the alternative.

We spent Easter watching movies on tv. I was going to pick up something for Claire but I soon remembered that nothing is open on Easter. I know, crazy.

So we're doing ok, as well as we can be. We're both very nervous about the day 14 biopsy and trying not to think about all the scenarios that will lead from whatever it shows.

-John

Children donor match?

communityreply@lls.org — Wed, 04 Nov 2009 14:16:20 GMT

First they are checking siblings to see if they match for a bmt, but they also asked for my kids info and said they would check them too if no sibling match. Do they use your kids too? I didn't know that.

Dean's latest challenges...

bwarren@aep.com — Fri, 20 Nov 2009 04:00:38 GMT

Hello LLS Friends,

This is Jerry, Dean and Betsy's son. My mom wanted to update the website but has not been able to get to a computer the last couple of days.
Mom and Dad were down in Houston for a follow up appointment with Dr. Andersson. They also had an appointment with the rheumatologist to assess the condition of Dad's ankles. Dad had a CT scan of his lungs on Monday to assess the condition of his lungs after having the fungal pneumonia about a month or so back. The CT of his lungs was much improved from the last one so this is good news. Dad has been drinking lots and lots of water because of all the medications he is having to take which can be toxic to his kidneys. Dr. Andersson was concerned with some of Dad's kidney lab values and wanted to have Dad stay in Houston Tuesday to get infused with some IV fluids to get better hydrated and then double check his kidney values on Wednesday. They also saw the rheumatologist on Monday and they ordered an MRI of Dad's ankles in order to determine the source of the pain that Dad has been having in his ankles recently. On Tuesday evening when they were in the waiting room for Dad's second MRI of his ankle Dad spiked a fever and began having chills. They decided it was best to head on down to the ER to start some treatment for his fever. The doctors have Dad on a couple of different antibiotics as well as an antifungal and an antiviral. They stayed down in the ER all night last night and thru the day today and are still down there at this moment...it is really busy in the hospital!!! His fever has spiked a couple of times during the day but has been okay since about 4 this afternoon. While they have been waiting to get a room they went ahead and performed another MRI on Dad's other ankle. They later found out that Dad has a condition of the bones called avascular necrosis in his ankles. This condition causes the blood vessels that supply the bone tissue to not be able to supply blood to the tissue and it starts to decay and degenerate. This condition can be caused by many things but in Dad's case was caused by the high doses of steroids he was on before and after transplant. Unfortunately, the condition is irreversible. Hopefully they will be able to manage this condition with physical therapy/walking/foot aids that can take some of the weight off of Dad's ankles and prevent further degeneration of the bone and joints. I will try to keep everyone posted on any new news of Dad's condition.
Also, I would like to update everyone about Dean's dad, my Grandpa. As you might have read, Dean's Dad had a mild heart attack about a month ago. He was recuperating from that and about a week ago had what he thought was another heart attack but found out was a diseased gall bladder that was causing him a lot of pain and also putting stress on on his heart. He was scheduled to have his gallbladder removed this Friday and had met with surgeon on Monday afternoon to talk about the surgery. On Tuesday morning while eating breakfast with family, Dean's dad started having chest pain again. He couldn't tell if he was having chest pain from his gallbladder or his heart but it was bad enough they had to call 911 and he was taken by ambulance to the hospital. They drew blood to determine whether his pain was from his heart or his gallbladder and found out later on that day that he had suffered another mild heart attack. He is kind of between a rock and a hard place because he needs to have his gallbladder removed but his cardiologist wants him to wait at least 2 weeks to let his heart recover from this latest heart attack before undergoing surgery. Also, they will have to take him off of one of his main heart medications, Plavix, because it is a blood thinner and can complicate surgical operations. The doctors think that the when the gallbladder is causing him pain that this is raising his blood pressure and heart rate and putting stress on his heart which is already in a precarious condition to begin with. Hopefully he may be able to go home by Friday if he is having no more chest pain and is tolerating eating well.
Please keep both of them in your prayers!!!!

Jerry

Haplo transplant with NK cells for 4 yr old

communityreply@lls.org — Sat, 14 Nov 2009 17:13:03 GMT

Looking for any advice from those who know anything about haplo transplants (with NK cell infusion). Haploidentical transplants are using a parent donor for the stem cells (Haplo/Half match). The last round of chemo for my son only dropped cancer from 20% down to 14%. Now doctor is waivering on wanting to go forward with this second transplant because he is not in remission. We are contemplating 3 options:

- Go forward with haplo transplant not in remission (and hope the NK cells do the trick)

- Do a 3rd round of chemo with ARA-C and really knock him down immunologically again

- Go for a different clinical trial using Epratuzumab chemo & NK cells 2000 miles away (he has CD22+ Bcell ALL)

Any of you out there convinced that NK cell infusions can really take care of residual leukemia? Just pondering the immunological side of things, if the NK cells truly do have an anti-tumor effect, and a haplo transplant will offer GVL effect, will it really matter if it is 5% vs. 14%? We're way beyond trying to find any published data or numbers to give us any idea of how this may go. Just the old adage that if your not in remission going into transplant, your chances are pretty high its just going to come back again.

Thanks for any input.

Mel

Here's our story...

communityreply@lls.org — Wed, 11 Nov 2009 20:23:39 GMT

My sister has been battling non-Hodgkins Lymphoma since 1988. She has gotten to the point that chemo is no longer effective. A t-cell transplant was a viable option for her and I am her match. I have started a blog about our journey that may be helpful to read if you or someone you know is facing this test as well. Please have a look and pass the link along to any- and everyone that might benefit from reading it.

I encourage you to contact me if for any reason you think it might be helpful.

Be well.

+100 and doing well

communityreply@lls.org — Sat, 14 Nov 2009 15:02:25 GMT

Today marks 100 days from transplant for Brian.

He has been doing well. He is walking 3 miles everyday. Well, not in the rain. No signs of GVH, but he will be reducing his meds starting monday. His counts are good, slow and steady, the platelets are the slowest right now. Brian did have a BMB two weeks ago that showed he is 99% donor. He feels really good and want to do so much more. He does agree with me that reshingling the roof is not something he should do right now. Although waiting for contractors to call back is not to healthy either. It is one heck of an adventure. I am very proud of him, but I know there is still a long way to go.

I may not post much but I do read the boards often and they are very helpful, thank you all very much.

Medical Mystery Tour Update

tex_silver@yahoo.com — Sun, 15 Nov 2009 18:20:23 GMT

It's too early to tell what the long-term benefits of the Tacro might be. But I have to say that my first blood draws after two weeks on it appear to have produced some pretty cool results.

I don't know if it'the Tacro's even working yet. However, my PLT were over 100 for only about the third time in a year and a half. My HGB is over 14 (14.1) for the first time in over a year and a half. It is up from 13.2 last time and I'm only 0.1 points from leaving anemia behind on the scale my doc uses. My WBC is normal and so are my ANC...again for the first time since summer of '06.

It could be coincidence and we'll know if it is as my tests continue weekly for awhile. But I have a hard time dealing with the timing of this coincidence,if that's what it is.

Oh, also, most of my liver enzymes are in the normal range for the first time since my SCT. The phosphates are still really high but this is such incredible improvement.

Hopefully, I'm on my way.

RSV - Respiratory Syncytial Virus

communityreply@lls.org — Mon, 16 Nov 2009 05:53:49 GMT

Peter has been in hospital for 4 days with febrile neutropaenia. Zero neuts or white cells and other counts dropping daily, and constant high temps. He has a terrible cough which makes him throw up and keeps him from sleeping.

We just found out this evening that he has RSV. I have never even heard of it.

Has anyone experienced this in their kids with cancer? Any info much appreciated as I have no idea.

Bridget

http://www.caringbridge.org/visit/peterpirie

p.s. he in in LTM for ALL

So, I Started the Tacro...

tex_silver@yahoo.com — Tue, 27 Oct 2009 18:41:31 GMT

It took almost two months to get the meds in my possession. Medco is usually pretty good bu they do have sticky places.

I was going to start yesterday morning. I forgot. So last night I read through the stuff on Tacro, pulled out the Bactrim and Acyclovir and sat and thought. I read about all of the restrictions, I remembers the things the Bactrim can do and I looked at the horse pill that is Acyclovir. I remembered how much I chafed under the restrictions before and how I just got sick and tired of taking pills.

I thought about what I was losing. I've been off all transplant-related meds for about two and a half years. I won't be able to plant my peppers, there are certain chores around the house I won't be able to do and I'll have to start being much more careful about what I eat again. Last night I had some bleu cheese as a kind of farewell.

I think the words that really hit me from the instructions were "If you must be out in the sun..." I Funny what things can finally trigger emotions.

I just got damned sad.

Today's a little better. I have to do this and I'm glad it's there. I just needed to bitch.

I'm fine, really. Thanks for reading.

are there people out there with CMML?

communityreply@lls.org — Fri, 01 May 2009 00:03:56 GMT

Not really sure where to begin with all of this. Have never done this before but would like to talk with others who have spouses with this disease or who have CMML themselves. My husband was dx in July of '08. He's was on Hydrea for a short time, then Vidaza for 4 rounds but it did nothing for him. He's now on Dacogen, 3 rounds finished and starting the 4th Mon.; then a marrow biopsy to see what it's done for him. He needs a sct but has no donor. He has a rare DNA which makes it even harder to find someone. Has a sister but she wasn't a match. Wondering if others have been on either one of these 2 chemos and what other drugs might have been more helpful. He's definitely transfusion dependent and has iron overload due to the number of transfusions so he takes Exjade for that. Counts have come down a bit lately but still very high. Just need to touch base with others...

Graham's Double Cord Blood Transplant Journey at The Hutch

samantha@adonorforgraham.com — Mon, 06 Apr 2009 07:36:02 GMT

Hi All,

Thought I would continue Graham's thread here. If anyone wants to read the whole thread, I have archived it here at our website.

All is well in Melbourne. Graham now only visits the clinic once a week and we are headed out of town for the Easter weekend with the kids.

Sam xx

Any experience with R-CVP Chemo?

jrice@mcai.com — Mon, 14 Sep 2009 17:39:23 GMT

I will most likely be treated with R-CVP when the time comes for my Follicular Lymphoma Grade 1 Stage 4. I was wondering if anyone has had any experience with this treatment and how were the side effects???

THANKS!!!

Jeremy

anyone else on here that is between 19-40?

ontariocutie@msn.com — Fri, 10 Jul 2009 23:16:52 GMT

I saw this bored today adn wanted to get some conversations going for young adults with Cancer!!!

Kyle needs our prayers more than ever!!

nicole_rc@yahoo.com — Fri, 10 Apr 2009 03:52:23 GMT

I just read this update.. Praying for KYLE!!

Friday, April 10, 2009 3:44 PM, NZST

Kyle suffered from massive cardiac arrest early this evening where it took several attempts to bring him back.

At this moment, he remains in a very unstable condition.

He will go through an emergency surgery today to evacuate subarachnoid haematoma in his brain.

Please lift him up, pray that his vitals improve and his procedures go on without a hitch. And do pray for his strength...

My Husband

communityreply@lls.org — Tue, 14 Apr 2009 22:14:38 GMT

time for an update I think

A recap - diagnosed in Feb 2008 in the UK

Treated under the AML16 trials regime with 2 rounds of Chemo { Cytarabine and Daunorubicin ] He seemd to go into Remission at the end of round 2 and was then randomised into the next stage and given another round of Chemo [ same drugs ] and then entered on the 54 week maintenance programme of 5 days of daily injections of Vidaza every 6 weeks.

Sadly he came out of remission and we were sent home to enjoy the period between November and the end of the year and told to do whatever we wanted. During this time while the docs were thinking and evaluating things his blood counts were decreasing and he was needing at least 2 units of red cells and at least 1 unit of platelets every week.

His HIckmna line had been removed in October because of an infection - so with weekly sampling and transfusions his veins were beginnning to suffer.

In January he was admitted with a severe nose bleed and his counts then went competely haywire - resulting in about 8 units of blood and 4 of Platelets being given in the space of about 5 days.

Most of the docs were happy at the thought of putting in a new Hickman line and then tarting Chemo again - one doc was against a new line - feeling that the danger of infection should rule it out . My husband [ who was the one who had to endure the attempts to find a vein , after all ] held up a rather bruised and battered hand and arm and asked her if she was willing to try and get the next cannula in

New Hickman line went in

His Chemo re-started on Feb 3 - this time FLAG [ Fludarbine and Cytarabine with Neupogen being started the day before the Chemo ] It went reasonably well - the usual temp spikes , chest infections etc etc BUT we had a dreadful week when he was barely awake / with us but not unconscious whilst he was on IV Ambizome. It was bad enough that the staff didn't think he was going to survive that weekend - but he did and came home on 13 March as soon as his bloods started to come up , When he came out his Neutrophils were only 0.2 and I was told to watch him like a hawk - but the feeling was that he needed to be out .

We took life very easily and his appetite came back and he was well fed. He was on plenty of drugs by now - Aciclovir ,Voriconazole, Ciprofloxacin , Ramipril , Furosomide and Ompeprazole .

He grew stronger and his bloods came up a bit - we got Neutrophils to 0.5 and a new Bone marrow was done in the ward on 25 March and we got the results of that on 3 April - myeloid cells still present though we do not know in what quantity.

He attended yesterday to be given Neupogen again and today was admitted for Chemo - same drugs as in Feb. The real surprise were his lood results today

Hb 101 Wbc 4.2 Neutrophils 3.4 and platelets 28 !! fantastic results His White count has never been as high as that since he was first diagnosed and his Neutrophils reached 3.2 in June last year .

We will see how things go this time

Swallowing problems and abdominal pain

communityreply@lls.org — Tue, 17 Nov 2009 18:13:45 GMT

Have your kids had swallowing problems and abdominal pain? My daughter is having abdominal pain every day. She has delt with this pain over three months now. The level of the pain is varying from light to severe pain. She also vomits approximately every third day. Besides she has problems to swallow food and everything must be smooth, however that does not prevent her for vomiting. She has not had any constipation. I have discussed this issue several times with our Onc but he thinks that this is just a side effect of chemos and there is no reason to worry. I am just starting to get really worried as this problems is getting worse day by day.

Peripheral Neuropathy associated with CML drugs (Numb toes)

communityreply@lls.org — Tue, 17 Nov 2009 20:57:01 GMT

Does anyone out there have experience with peripheral neuropathy of the toes and feet in conjunction with CML treatment? I have been on Tasigna..then Gleevec...and now on Sprycel. I noticed my toes getting numb about a year ago and now it seems to be spreading to the balls of my feet. From searching the Web, I don't see much that can be done...but I am interested if others have had the same experience. Tom in KY

Can We Recap Our Journey??

communityreply@lls.org — Thu, 15 Oct 2009 15:29:59 GMT

This disease is so scary and I'm thinking this might help newbies as well as others.

--I was diagnosed with AML July 2008 at 58 years old.

--Had chemo without all the terrible side effects. Not nearly as bad as I feared.

--Had several bone marrow biopsies; mine were not nearly as painful as I had heard. The person doing the biopsy makes ALL the difference.

--Lost all my hair; cried.

--Isolation for 26 days....not fun.

--Got very sick after consolidation treatment; hospitalized with severe infections.

--One of the hardest things for me is accepting I can do nothing to change this situation; there are no pills, exercise, foods, or magic to cure this disease.

--I'm 15 months in remission and am able to do most things I want to do. Get tired easier.

Maybe some of the rest of you will recount your journey, especially with a look to the positive side. I know, I know, there is not much positive with cancer, but maybe we can allay some fears. I had heard all the horrors of chemo (and I know some of you have had them all) but mine was not that bad. If I had heard someone say their experience was not too bad, I would have felt better.

Please don't blast me thinking I'm saying cancer is mostly sunshine and roses; I'm not, but we all need encouragement. And having HOPE makes our lives so much better. When I found a woman my age that had AML and was 5 years out I was ecstatic, especially after looking at the statistics (which I do not recommend).

Hope this helps someone.

Hugs,

Teresa

Chemo Done , Worried - Waiting

communityreply@lls.org — Fri, 20 Nov 2009 10:52:14 GMT

Hello all, this is my first post to the board. My wife just completed her 6th and scheduled final round of R-CHOP for DLBCL. Scans done a few weeks ago showed the masses had completely resolved. But in the visit with the Dr. prior to the final round, he expressed some concern about some prominent veins in her neck. Another scan is set for next week with a follow up visit with the Dr. The sense of accomplishment I was expecting with the completion of chemo has been replaced with great worry and anxiety. Almost worse than I felt upon initial diagnosis. I assume the concern is that the prominent veins could be the result of Superior Vena Cava Syndrome that could indicate a tumor impeding blood flow. I have found nothing reassuring that it could be caused by something else. Can DLBCL respond so seemingly completely to chemo during treatment only to rebound a few weeks later, while treatment is still ongoing? So for now, that terrible feeling in the pit of my stomach.

Extreme Home Makeover

communityreply@lls.org — Mon, 16 Nov 2009 01:55:58 GMT

Is anyone else watching tonight's show? The mom is a leukemia survivor. She had a SCT. Extreme Home Makeover was able to find her donor and introduced them. I cried.

They also did a bone marrow drive and registered hundreds.

Very Cool!!!!

Sherry

AML M2 since 10/2008, finally registered...

communityreply@lls.org — Tue, 27 Oct 2009 13:25:57 GMT

Hi everyone! I have been reading these discussions for a long but haven’t had encourage to write until now. I'm 35 year old woman from Finland (yes from FINLAND, where Santa comes J). So at first I have to apologise my writing mistakes, Finnish is my mother tongue.

In whole Finland there are only 5 million inhabitants, so there is not so many Finnish AMLers. There are discussion boards for different kind of cancers but not for AML. So that’s how I ended reading “your” board.

I got sick with AML M2 on October 2008. I have translocation t(8;21). I had induction treatment and three consolidations during autumn 2008 - spring 2009. I have got two daghters and younger was only 11 months when I got sick, so hospital times were very hard for me, even my husband and children visited me a lot.

Treatments went quite well, I got few serious infections when I was neutropenic, but that’s normal I think. Doctors mentioned that my cells healed quite slowly after chemos for woman my age. I went into remission after induction, but PCR still found few sick cells (0.08). After third and last consolidation PCR still found few sick cells (0.004), but doctors said that was typical for my AML type and those cells may disappear during the time (or rise of course)...

Now they have been monitoring my blood once in 1,5 months and BMB is in every three month. Last BMB was on last of August PCR still found 0.0003 sick cells. So I'm very interested hearing if anybody has same situation that you had disease left after the treatments and how if has acted during the time... Increased or vanished?

I know it’s stupid, but I’m worrying relapse a lot and I’m not handling the situation very well... I have next BMB coming 2.11. and I have these stupid “relapse” symptoms again (headache, sore bones, cough etc).... I have had these before every BMB and still things have been ok... so either these symptoms are my imagination or still something caused by chemo... who knows.

Anyway this board has been very useful and comforting to me so THANK YOU ALL!!!!

Petra

Message was edited by: Petrapee

H1N1 and platelet counts

communityreply@lls.org — Fri, 13 Nov 2009 13:03:39 GMT

Hello all, its been a while since I posted on here. I am hoping someone can help me out. Brandon was DX 9-11-06 PreB ALL HR. We are so close to the end of treatment so of course everything and anything that can go wrong is. Brandon was DX with H1N1 on October 29. We did the Tamiflu and to be honest it worked great! He never got really sick and seemed to breeze through. The day he was DX his counts were low. I figured well, he has the flu, so of course they are going to be low.( WBC 1.2 HGB 13.0 and PLT 96 ANC of 600 ). His Dr told me that his counts should start to come up within a week. Ok, so fastforward to yesterday. Counts are still down WBC 1.4 HGB 10.8 PLT 34 ANC 600. I may be overreacting,as i tend to do with this BUT his PLTS are really low! I was always told that the number they look at when dealing with a relapse is the PLT count. So obviously I am really getting scared. His oncologist have stopped all chemo and we are going back in a week to recheck counts. If there is no improvement we are going to do a BMA to chec for relapse. My question is..have any of your children either had H1N1 or a virus that has caused counts, esp PLTS, to drop like this? I am so scared and just looking for a little bit of help,whether it is negative info or positive. You are all the experts in my opinion!!

Thank you Christine

How long after transplant was your Hickman or port removed?

communityreply@lls.org — Thu, 05 Nov 2009 15:36:08 GMT

Just wondering. I know every case is different but what was your experience.

DH has had his Hickman since early April. He is scheduled for SCT the first week of Dec. Will he come home with it?

Maura

Diagnosed But Still Waiting - Follicular Lymphoma

communityreply@lls.org — Sun, 16 Aug 2009 01:23:14 GMT

Hello All,

My name is Amy and I am a healthy 35 year old social work administrator living in Seattle. In December 2008, I found a lump in my upper right thigh/groin area. I am a runner and a skier so I assumed I'd grown a "new muscle." When I saw my primary care physician in May 2009, she thought I should get a sonogram, which was followed by an MRI, which was followed by a needle aspiration biopsy which tested positive for Lymphoma. Two weeks ago, I had an egg size mass plus a smaller "friend of mass" removed from my thigh/groin. Results are that is follicular lymphoma. I have now had additional blood tests with an oncologist (all clean), a PET Scan (shows lymphoma in my thigh and armpit but low activity) and on Friday the bone marrow biopsy in both hips (no results yet). So far, the current oncologist thinks it is Stage 2, Grade 1. He says if the bone marrow comes back clean, he would look towards "watch and wait" for me.

Now the questions:

I had seven people in to look at my kitchen when I did a remodel. How many second opinions do you get when it comes to your body? Two? Three? Ugh!!!

Why would anyone watch and wait on any thing like cancer? I've had the oncologists answer (cells don't respond when they aren't active, etc) but seriously should we do radiation to kill what's there or use rituximab to stave it off?

I have had no symptoms and I have a husband and friends and oh yeah, I'm 35 so this makes no sense. I need to keep working. Can I do this? People keep saying this will "change you." I'm not that interested in change. I want to beat this and move on. What does it take to do that?

Thanks in advance for your input.

Amy

Please Fix Preferences

djlawman@yahoo.com — Sat, 04 Apr 2009 12:10:23 GMT

I have started getting e-mails for every response to my thread. I went into my Preferences, and checked NO for everything, and I am STILL getting an e-mail for every response to my thread.

What gives? Can you please fix your software?

Thanks.

help with a sibling

communityreply@lls.org — Tue, 10 Nov 2009 21:50:40 GMT

hi everyone -

a couple of months ago, my 4 year old daughter ashley got diagnosed with ALL. it's been hard on all of us. but the kid i'm really worried about right now is her brother dean.

about a month ago, he got the swine flu - which meant that we all walked around the house in masks, wore gloves, and lots of other stuff he wasn't used to seeing. so he's deathly afraid of getting sick again.two weeks ago, he came home from school because his teacher said he was inconsolably crying. turns out, some of the kids in his class were coughing/not covering their mouths - and he was afraid of getting sick and in turn getting his sister sick. we thought we got past this, but in the last week we've seen some more warning signs that all is not right with him.

some examples:

- he was constantly asking if we could go home on one of our "daddy days," i.e. i try to spend a full day with him every other week or so just him and me, and not only was it was hard getting him out the door this time and even harder to keep him having fun while we were out.

- he started crying and refused to go to school on monday

- he came home from school today (tuesday) because he was crying again at school

- he has been afraid to be by himself while at home - he won't even go downstairs by himself in the morning (although he didn't do this much before, but now it seems like it's a more intense need for him)

- he's complaining of stomach pain, which seems to only be induced when he needs to be separated from his mom and sister

re: the school thing - we asked him what was wrong. he usually plays it pretty close to the vest, and doesn't tell us much until we pry it out of him. but he said he was sad and worried that his sister wouldn't eat. we told him that this is a normal stage of the chemo cycle, and he shouldn't be worried. but he just seems to want to be home with mommy and ashley whenever he can be. so much so that it makes him upset when he's not and he's wanting to come home from school when he's there.

we're not sure what to do from here to get him back on track... we've thought about family counseling, him having meetings with the school social worker, or reserving special times just for him, me and mommy once a week, and/or giving him special mommy time once a day when i get home. i'm sure he's confused, sad, jealous of the attention, worried about his sister - the emotional works.

any advice?? thanks from our family for any help you can provide.

AML Relapse after MUD BMT

reneewright318@earthlink.net — Wed, 08 Apr 2009 00:26:27 GMT

Wanted to try to restart the thread about my son from the previous board. But this board is really acting up today -- slow & hanging up -- not sure I'm up to the challange right now so we'll see... I'm not really sure where to post this either, but I've found more encouragement and good information on the transplant topic than any others so I'm sticking here.

25 yr old son Dx AML M0 on 7/31/08. Terrible cytogenetics (some of the worst they'd ever seen; hard time deciding Dx between ALL & AML)

Treatment at MD Anderson in Houston; Dr. Ferrajoli (leuk) and Dr. Andersson (stem cell)

Successful induction first week August/08. Siblings not a match for transplant. Began search for MUD.

Consolidation chemo Sep - Nov 08 (3 rounds). MUD transplant scheduled 12/15/08. Relapsed 12/1/08. Transplant canceled.

Two chemo rounds during December 08 but unable to acheive remission.

MUD transplant 1/21/09 with 98% blasts in PB.

Week of 3/16: Hospitalized for bacterial infection

3/25: Blasts (1%) appeared in blood -- day +63 post tansplant - initially attributed to recent infection

3/27: BM Biopsy showed 4% blasts in BM - minimal residual disease that didn't appear active but looked like cytos from inital Dx

4/1: Blasts 3% in PB - stopped Prograf and began process to request cells for DLI from transplant donor

4/3: Blasts 11% in PB

4/6: Blasts 13% in PB - met with leukemia doctor - plan was to give vincristine & dexamethasome as out patient on Wed. 4/8 - if it appeared to be keeping blasts down, follow with additional treatments while waiting for DLI; she mentioned concern regarding the amount of chemo he's had to date.

Which bring us to today: We got word that blood culture from yesterday tested positive for bacteria. Matthew is currently in the ER awaiting a bed for admission. Won't be able to talk to the doctor until tomorrow but I'm guessing that any chemo will be on hold pending treatment of the infection. Which just opens the door or opportunity for the leukemia to take off in the meantime...

To those who haven't lived in this world, reading thru that cut & dried chronology above doesn't begin to tell the story. But all of you here can read between those lines and know it's been a never ending roller coaster ride through hell.

I thought the day we got his diagnosis was the worst day of my life. We always knew his leukemia was among the worst--extremely aggressive and resistant to chemo. But the doctors have always had a plan, another treatment to try -- and have been so good at giving us confidence and hope in their ability to treat him. I was plenty scared over the holidays after the two attempts to get him back in remission failled -- and it wasn't clear for a few days what the plan was -- or if there even was another plan.

I was plenty scared when he went into transplant with 98% blasts. Realistically I knew another relapse was highly likely. But I prayed it would take longer, that he'd get a break -- a chance to recover and have some quality of life before the next go round... that remission would last long enough to make a 2nd transplant possible. But even when the blasts showed up again, I was still hopeful. There was still a plan.

But now this infection.... I feel like my feet have been kicked out from under me. The scared I was before was nothing compared to this. I feel like I've got a rock in the pit of my stomach and another one on my chest. And my brain has checked out. I cried non-stop for over an hour. Now I'm just numb. I know by tomorrow I'll have pulled myself together and be back in the fight again -- but right now I am just so scared and discouraged and sad and having such a hard time thinking positive and holding onto hope.

Thanks for reading this long rambling depressing post. Will continue praying for healing, strenght, courage and peace for everyone here!

Low Absolute Lymphocyte Count?

communityreply@lls.org — Mon, 28 Sep 2009 18:24:39 GMT

I am a mom just seeking advice from those knowledgeable in blood counts and what they mean.

My 5 year old son has been ill for about 1 month with recurrent fevers. A week and a half ago his pediatrician ran a cbc and it was mostly normal. His total WBC was normal, but the absolute lymphocyte count was low (1000, and normal for his age was 3000-9,500) and absolute monocytes were high (I can't remember the number, but the percentage was 17%.) His hemoglobin was the lowest of the normal range (11.5) and platelets were normal, but on the lower end (just under 200k.)

His ped. put him on antibiotics for 10 days, and he just finished them, but he is still running an almost constant low-grade fever (99-100.) He keeps missing school because of this. I had him back in the dr. on friday, and he said that the low lymphocyte count can be causing his body to run a fever, but he couldn't really explain why.

Does anyone know what low lymphocytes mean? Should I be alarmed or is this just no big deal at all?

I am familiar with these boards because I was here almost exactly one year ago researching information regarding this same child. (He had a lymph-node in his neck that persisted for several months and when finally removed it was over 2 inches in diameter, but thankfully came back as benign.)

Anyways, I feel silly asking but I know that many of you are basically experts when it comes to blood counts and I am pretty clueless.

Thanks.

It's Like That And That's The Way It Is

communityreply@lls.org — Sat, 24 Oct 2009 07:12:11 GMT

This a poem about my 25 year survival of leukemia.

It's Like That And That's The Way It Is

So what's it like to claim such a marvelous victory?

So what's it like to know that you finally are cancer-free?

So what's it like to face your death at the age of seventeen?

So what's it like to see a day that most have never seen?

It's nothing like you think that it could, would or should be

The cancer may be gone but the pain is still with me

The pain of letting everyone connected to me down

The pain of getting blocked before I even hit the ground

I hurt my mother. I hurt my sister. I hurt my family. I hurt my friends.

By turning out to be much less than what I thought I should have been.

I have to wonder at times if God didn't make a mistake.

What happened to that other girl in the clinic? Did she ever make it?

It became my own sad version of the TV show 'Survivor'.

Outsmart, Outplay, Outlast, Outlive. Who would end up being the last one?

I am competing against sick babies to be saved by God's grace

What made me so damn special? Why was I chosen to win this race?

Watching children succumb not only to the illness but also to the fix

Putting poisons into our young bodies. To keep us well they made us sick

I won't burden or bother anyone and I will beat this on my own

I was a Walnut Hills High School senior, college-prepped, I was damn near grown

So who was I going to trust, the devil I knew or the devil I don't

I'll decide what pills I'll take, Lets see what happens if I won't

Not a good idea to decide what pill is or is not best for you

Ended up with a case of pneumonia, Laid me up in the I.C.U.

Maybe on some level, I was just ready to go home

Always tired of fighting this battle, Tired of always being alone

My pastor came to see me. He wanted to give me my last rites.

But something stirred up inside me. Something told to me rise up and fight.

I remember asking him to leave, I wasn't quite dead yet.

I was offended he was ready to give up with little or no regret.

That was my first personal revelation. I finally knew what that word meant

Its like God is awakening inside of you and you know it’s heaven-sent.

So I learned a painful lesson about taking matters into my own hands

God took pity on my hubris, fixed my mistakes, put me back on his plan

Unfortunately this was a lesson I would repeat and repeat again and again.

But soon I will learn my lesson, follow God's plan and you will win

Maybe I have learned my lesson because I have many battles behind me.

25 and zero is a good record. No knockout yet, I wouldn't bet against me.

So what's it like to claim such a marvelous victory?
It’s like knowing that you are loved, holy and unconditionally.
So what's it like to know that you are finally cancer-free?
It’s like reclaiming your body from its own destruction and accepting your victory.

So what's it like to face your death at the age of seventeen?
Don't think it made a difference. It’s just the time and place I happened to be.
So what's it like to see a day that most have never seen?
Blessed and grateful for God's grace and certain I have many days yet to see.

http://stores.lulu.com/jewellridley

Question regarding bone marrow donation

communityreply@lls.org — Tue, 10 Nov 2009 00:36:18 GMT

Hi,

Does anyone know how many times a donor can donate stem cells in their lifetime? I looked on the bone marrow registry site and couldn't find an answer.

Thanks and take care

Robin

Newly diagnosed and need support.

communityreply@lls.org — Thu, 12 Nov 2009 16:56:54 GMT

Whew....here goes. I'm 60 years old Twenty months ago I became very ill. Thinking I had the flu I stayed home from work and during the day had a fever that spiked to 105.2. The next day, my husband insisted I go to emergency and get checked out amid my protesting that it was just the flu and what were they going to do for me. Turned out I had a urinary tract infection (no symptoms) and I developed septicemia that caused me to be hospitalized for a week. During that time, blood was routinely drawn to monitor the progress of the antibiotics on the infection. My doctor asked me if I had anemia, to which I responded no. The next thing I knew I was visited by a hematologist/oncologist. After I was released from the hospital I followed up with the oncologist who, of course, did more bloodwork. Early diagnosis, after an MRI, CT scan, PET scan, my first colonoscopy and a bone marrow biopsy was that I had mantle cell lymphoma.......very, very early stage. A few months later, my oncologist changed the diagnosis to chronic lymphocytic leukemia, telling me that sometimes the two types of cells can be mistaken for the other. He told me we would "watch and wait" and after doing some reading about CLL, I was fine with that. I felt like I had a new lease on life. My oncologist monitors me and has bloodwork done and sees me about every three to four months. Three weeks ago I went for my regular follow up and was blindsided when he told me that when my bloodwork came back from the lab he didn't like what he saw, so he sent my blood to a hematologist/pathologist whom he believes to be the "Ferrari (versus Chevy)" of the midwest. He in turn forwarded my blood to Mayo Clinic, and all involved confirmed what my oncologist has suspected. I have chronic lymphocytic leukemia AND mantle cell lymphoma - which according to my oncologist is very rare and has a lot of physicians/hematologists/pathologists very interested in my condition. Is there anyone out there that has the same condition/diagnosis? How are you coping with this? Are you being treated yet and with what? My oncologist tells me that we will still be on a watch and wait, and I will follow up with him in February as he feels that any treatment now, because it's still in the very early stages and I have no symptoms, would not be prudent. In the first couple of weeks since my last visit, I was ok with this....didn't really think about it that much and figured I had a few more months before I would learn anything new and wouldn't have to worry about anything. And then - pow! - it hit me like a ton of bricks and all of a sudden I want to find out as much information as I can. I'm seriously thinking about making an appointment with my oncologist soon to discuss many questions that I have and feel I need to have the answers now.

Enlarged mesenteric lymph nodes and Splenomegaly

communityreply@lls.org — Tue, 05 May 2009 02:49:50 GMT

I am a 26 year old male and had a ct scan a year ago for a hernia injury in early 2008 and the test had also shown me to have enlarged mesenteric lymph nodes, a subsequent ct showed I also had splenomegaly. I have had a number of ct scans over the past year with the continued enlargement of both lymph nodes and spleen as well as more lymph nodes near my lungs, found last December, that are enlarged. The lymph nodes have not changed "too much" over the last year but continue to stay enlarged as well as they are seemingly spreading.

Given the fact that I do not have any significant symptoms besides enlarged lymph nodes and splenomegaly my hema/onc says that a biopsy is not an option right now as it could be more trouble given the size and location of the lymph nodes- risks outweigh the benefits at this point. He also says he does not believe that I have lymphoma, but of course he continues to want to monitor me. I sometimes feel like he doesnt want to give the impression that I do, and of course without a biopsy nothing is definitive, but it is hard not knowing especially since I have been given antibiotics for unrelated issues (I had a surgery last year for my hernias and ended up having a second surgery due to internal bleeding and was given some mega antibiotics while I was in the hospital for a week) and have been given no other reason for the enlarged lymph nodes or spleen. Has anybody else had anything similar? I am starting to think it is an indolent lymphoma as I continue to get monitored, and always when I leave my doctor tells me to come in sooner if I experience any weight loss, night sweats (which I do have my girlfriend says I sweat like crazy at night but of course I do not have any other problems besides pain from my enlarged spleen), etc...B symptoms. So I am beginning to think he does think I have it but does not want to cause alarm to me as there is no definitive answer, but what else could cause splenomegaly and enlarged lymph nodes for over a year. I have discussed celiac and have been tested for all the infectious diseases under the sun as well with nothing coming back positive. Any help would be greatly appreciated.

Thank you

-M

My 8 year olds journey Relapsed All

communityreply@lls.org — Sat, 04 Apr 2009 03:20:12 GMT

Hey I had a thread on the old board about 1 month ago, my son had relapsed 8 monthes into his all treatment.

We found out he was going to bmt, due to the early relapse and his rare translocation for all.

We have 3 blocks of chemo to do, before we go to bmt.Each block is 36 days long.

Our biggest enemy in all this is my sons translocation, it is just to rare, they have barely anything to work with

as far as other cases, we were told less then 5 kids a year will have the 17:19 translocation he has. All of the ones

they know about relapsed and were early rapid responders.

It has been a long month, they put us on protocol COGADVLO4P2 to get him in remission again,

ITs a clinical study with a drug called "EPRATUZUMAB"

The epratuzumab, attacks the proteins attached to leukemia cells, cd22, which my son had. Thankfully

he was clinically in remission at his day 15 bma, our day 36 bone marrow will be next friday. I was told they are gonna do a special

test on this bone marrow, to look at my sons cells and check the proteins on them, I feel really good about this, like they are on to something

with this 17;19. Truthfully I am surprised he is in remission this fast, he really got nothing different then he had before, one huge dose of doxorubicin, the 8 doses of eprutuzumab, 4 pegs,4 vincristine, 2 lp methetrexate, and 1 lp ara-c,29 days of steriods, some of this was after his day 15 bma. the epratuzumab he never had obviosly.

I worry about waiting to long to go to bmt, all though, the 2nd and 3rd blocks of chemo, have neopogen, and rest periods, it makes some sense to let him recover, and make sure he is still in remission.

We spent 23 days in the hospital, my boy was doing good so we got to go home, but have been back every few days. Tommorrow, monday, and thursday we go in next friday we get admitted for day 36 bma, and days 1-5 chemo of block 2, cytoxin and etoposide,

For his bmt, we are offered study cog ASCTO431, 50% chance of getting Sirolimus, plus standard gvh prevention. Or could just get the standard gvh tacro and methotrexate(unrelated donor). Bmt chemo is gonna be tbi, cytoxin and thiotepa

Anyone do this or have sirolimus before?? I am told it has been used with good success for adults, and organ transplants.

Defenitely worried, it seems weird to me having my son at home, when he is going to bmt, having meet a few aml parents, and all their struggles just getting their kids to stay in remission, I do worry why, all this "extra" chemo, why not just to bmt.

I really hope this eprutuzumab is our magic drug to keep this away for ever.

I should also mention this stuff hasnt been used much, a phase one study, had 15 kids, with promosing results, our phase 2 study I believe is only open to less then 300 kids. Ever since my son had eprutuzumab, alot of his blood tests have come back hemolized, his blood looks like tomato soup, it is loaded with fat, literally if the nurses leave it sit for just a minute it starts collecting the white fat, like bacon grease in it, it has to be the eprutuzumab, really wierd, will be inteesting to see how it clears up, we are 6 days done with that med.

For CML Men Only

communityreply@lls.org — Thu, 19 Nov 2009 03:47:12 GMT

I know you women are all jumping on this posting. But I warned you.

I will let this article speak for itself:

http://www.saudiannals.net/article.asp?issn=0256-4947;year=2009;volume=29;issue=5;spage=412;epage=412;aulast=Tazi

Sharts shards!!!

Neuropsychologist and home school

spookyproud@aol.com — Fri, 23 Oct 2009 18:29:27 GMT

Has anyone had their child evaluated by a neuropsychologist?

How did you go about that? Through your oncologist, your pediatrician, or school?

ALSO: How many hours does your school district provide for a home school teacher? What age is your child (in case it is dependent upon age) Kaeden is five.

ALSO: Do they provide homeschooling EVEN though your child is currently attending school? If your child is ill does it take another IEP and finding a teacher to start home schooling OR has that already been set up to work concurrently?

Thank you!!! and yes, we are having problems....

Cheryl

cml insurance problems

dallen145@yahoo.com — Wed, 21 Oct 2009 21:42:15 GMT

I have been on Gleevec since March of this year. My husband's work switched insurance and told everyone at the last miniute. The new insurance started Oct. 1st which is Unitedhealth Care. I talked to 6 people on Monday and was going to get transferrred to the 7th when I had enough of it and gave up. I only have 5 Gleevec pills left and their telling me it could take 2-3 weeks to even get processed and approved. So I got my onc involved but their getting the run around too. What will happen if I go that long without my Gleevec, my numbers were great on this. Alot of bad side effects but good blood counts. The prescription company with this company is Medco and there not very nice to deal with at all. What is going to happen if I have to go with out my Gleevec or Zofran which I take for my serious nausea? The prices have all doubled in co-pays, I could barely pay before much less higher. The rich can pay for what they need and the poor can get it handed to them on a silver platter but us middle income are screwed. Sorry if that offended anyone!!! I am a school secertary and since I went back to work the end of August I have had pneumonia twice and emergency gall bladder surgery on Sept 18th . so I am in jeopardy of losing my job from missing work so much. And I am only part-time, that's all my onc. agreed to let me do. So I sure would welcome any ideas or suggestions on how to get the insurance on fast forward or anything at this point? My blood counts were great, (side effects are another story) and now they will probably go wacky without my Gleevec for weeks. Like I said I will welcome any comments on this!!!!

Dee145

When did you consider yourself a "Survivor"?

communityreply@lls.org — Fri, 25 Sep 2009 14:34:54 GMT

At what point did you consider yourself a survivor? Was it when you were first told you were in remission? Was it when you finished all treatment (including maintenance)? Was it after the 5yr mark? Just curious to hear personal answers to this question.

I still feel a little odd calling myself a survivor. I just started maintenance in June. I realize I've survived thus far, and that is something to celebrate, but I'm still being treated, so it feels a little strange.

Who's getting flu shot and or H1N1 vax?

communityreply@lls.org — Thu, 01 Oct 2009 11:09:50 GMT

Just curious what your treatment centres are recommending for vaccines this year. We are usually told to get the seasonal flu shot - but with all the contraversy this year, we may not get it til January. In Canada anyway, there is new evidence emerging that those who get the seasonal flu shot are at an increased risk of getting H1N1. They are recommending that those that people get H1N1 vax first then after that's all done near the end of the year, then they'll start rolling out the seasonal vaxes.

My question is - has any of your children got vaccinated this year and if so, for what? Also have any of your children had the actual H1N1 flu and is it all that bad?

Your thoughts would be appreciated! thanks...

Julindy asked to Leave?

julindy122@gmail.com — Tue, 27 Oct 2009 20:51:22 GMT

Someone from the LLS Community wrote that I may be asked to leave because of complaints logged against me. Last night someone from facebook sent me a scam email about a desktop dating site. Just because I was responding to this friend (not joining the site) an invite to the site got sent to 268 names on my contact list including some LLS friends I write to personally and the LLS Community Main Site. Later, a friend who thought this was all very funny wrote 'But what do I do with the naked pictures of Judy?" This too got sent to everyone, as he was hitting reply. It was a bad joke but I had no part in it. Now I'm told I may need to leave? Could you check all the contributions I have made here? I have taken care of friends having SCTs and am leaving in three days to help someone else recovering. People I know from here. People I love. I have lived with NHL for fifteen years, My husband John is the patient/survivor. I not only get support but I reach out to everyone. I would appreciate reconsideration of this and if other complaints have been logged against me as suggested, I believe I have the right to know who is saying what about me. Thank you. Judy Lindahl julindy122@gmail.com

When do you give Methotrexate pills.....

communityreply@lls.org — Tue, 11 Aug 2009 13:15:23 GMT

we are in LTM. Aj is taking his first dose of oral methx. He also takes 6-mp. I thought I heard somewhere not to mix these two together. Do any of you give the pills in the am and 6mp in pm? On the pill bottle for methx. it says evening. Your thoughts?

h1n1 vaccine

communityreply@lls.org — Tue, 13 Oct 2009 20:38:10 GMT

I realize this has been posted before, and one by me, but it got a little too long and off topic and I didn't want to get this question lost in it...

I just want to know how many kids/parents have got the h1n1 vax or are on the list to get one?

At our appointment last week, our Ped told us that in our province, they are recommending that all children under the age of 5 get the h1n1 vax, not just immunocompromised kids, because it can really attack the airways and its safer they get vaccinated.

We are therefore on list and going to go ahead when it comes in within the next month or so. The doc assured me it is safe, it isn't a live virus in the vax, it is essentially the same as the seasonal flu vax.

I appreciate your responses.

Thanks!

Matthew's Journey has ended

reneewright318@earthlink.net — Tue, 30 Jun 2009 21:28:22 GMT

At 12:30 pm today, Matthew lost his courageous battle with leukemia. He suffered a stroke in the early hours of the morning, likely due to low platelet count. They were unable to get enough platelets into him fast enough to stop the bleeding in his brain. Matthew left this life surrounded by the love of his family--his wife, mother, father, stepfather, sister and brother stood vigil at his bedside, touching and talking to him as his breathing slowed.

After all he endured this past year, Matthew never gave up and never complained. He was a true hero.

How are platelets after a Lumbar puncture?

communityreply@lls.org — Sun, 23 Aug 2009 23:40:51 GMT

Hello,

My son, Peter, is just on a bit of a chemo hold as his platelets are a little low. He is on cycle 8 of LTM for ALL.

I was just looking back over his blood counts since he started LTM, and discovered that his platelets always go low the week, or 2 weeks, after the LP. Other than those weeks, his platelets are always at a very healthy level. But with each progressive cycle, I can see that they dip lower and lower each time.

e.g. after cycle 6 LP they dropped to 79, after cycle 7 LP they dropped to 56, and after cycle 8 LP they dropped to 49.

They always recover by the next montly clinic visit, but I am just wondering how low they will be after the next few LP's . And I am especially wondering if anyone else has noticed this pattern.

Thanks for any info.

Bridget

Stage 4 grade 3 follecular lymphoma

communityreply@lls.org — Thu, 15 Oct 2009 00:14:26 GMT

IS this grade and stage a wait and see type? It is in the bone marrow and various spots in the body and the nodes. pet scan and bone marrow confirmed. whats next?

Update on Dawn (Meepsmom)

julindy122@gmail.com — Wed, 29 Jul 2009 13:39:47 GMT

Hi, Maybe this was already posted, but I can't find it on this thread. Dawn is doing very badly. She is at City of Hope and her mom wrote an email to some of us that she is full of lymphoma, even in her bone marrow, and that it has gotten way too aggressive. They are going to try a mild chemo to try to keep it in check and if she survives (her mom's words) she might make it to transplant after a second round of this chemo. Her mother is not expecting her to make it through any of this. We need a miracle and nothing less. The updates seem to be in the NHL forum, so keep checking there. Love,Judy

Travel Medical Insurance

communityreply@lls.org — Thu, 12 Nov 2009 05:37:03 GMT

We are wanting to purchase travel medical insurance for the US but we're having a tough time finding a supplier for yearly personal travel insurance. We live on the border in Canada so we do cross border shopping quite regularly. The companies we've looked into thus far won't insure a person with a condition such as cancer, regardless of age. Has anyone found an insurance company that provides good medical coverage?

prognosis question...

communityreply@lls.org — Mon, 10 Aug 2009 12:14:18 GMT

Ok, so this might seem like an odd post but my doctor's don't give me a definate answer so I thought maybe I could get your opinions. When my son had his test, I forget the exact term, but they see if their are any "markers" saying one way or the other if there are any signs of a good or poor prognosis, the doctor's said there were none to say either way. Is that something any of you ran into? He is in the intermediate risk group for t-cell All. He is 14. His wbc at diagnosis was 3.8 and hmg was 13.9 and platelets were156,000. He achieved remission at the alloted time and did real well with all phases. Only 9 days in the hospital total during all phases. DI was better than anticipated and he started maintenance on schedule.

So does this seem like he has a good prognosis? I know no one can predict the future, but maybe someone on here has a similar experience and could shed some light. When I ask my doctor he really doesn't say anything other than he's doing real well. I guess that should be enough but how could there not be any markers to tell us either way if he has a favorable or unfavorable prognosis?

Immature white blood cells

communityreply@lls.org — Fri, 02 Oct 2009 20:50:32 GMT

I had never heard of immature white blood cells before three days ago. I went in to my doctor for small irritants, and she checked things like vitamin levels and thyroid, etc. However, the blood count came back noting immature white blood cells. I cannot find information on causes of immature white blood cells other than leukemia or related forms of cancer. Are there no other possibilities? She is re-doing the CBC in a couple of weeks to be sure, but I could read the concern on her face... and understood it more when I started looking on the 21st century source of infinite wisdom and knowledge... the internet. Are the possibilities here REALLY so limited? If so, why did she not just tell me that I have leukemia? I have to think there are other possibilities out there... I just cannot seem to find them. Any ideas? Has anyone else had this happen to them? What was the outcome?

bryce is gone :(

communityreply@lls.org — Mon, 01 Jun 2009 05:01:15 GMT

Just wanted to let everyone know that Bryce passed away tonight at 9:54pm from leukemia

bryce is terminal

communityreply@lls.org — Thu, 21 May 2009 19:47:56 GMT

we got news today bryce's cancer has taken over his bone marrow and they are calling in hospice just wanted to thank everyone for their thoughts and prayers!

Where are we all from?

communityreply@lls.org — Tue, 20 Oct 2009 02:55:17 GMT

Maybe this is a strange question. Maybe not. I am just wondering where everyone who regularly (or even not so regularly) posts to this forum, is from. Not necessarily your hometown, but where do you go for your kid's treatment? We are from MN and go to Sioux Falls to the Sanford Children's Hospital for treatment. I noticed some are from other countries...Canada perhaps? Anyway, just wondering...

Michele's BMT Journey has begun...

communityreply@lls.org — Wed, 29 Jul 2009 17:14:12 GMT

Michele was Dx June 07 with CML. Michele is a 38yr old mother of 3 who was dx by chance. They found her Leukemia during a routine yearly bloodwork up for high blood pressure.After many drug treatments he body just would not accept the drugs. Her Leukemia did good on them, her body just could not tolerate the drugs. She is currently in the hospital at Baylor Dallas undergoing her BMT. Today she is on her 2nd round of Chemo, and transplant is set for Aug 3rd. We have set up a Caringbridge site that is updated daily if you want to join her through her journey. We wish all who is and who are thinking about transplant the best of luck.

http://www.caringbridge.org/visit/michelefuller

Evaluation of Osteonecrosis?

communityreply@lls.org — Wed, 23 Sep 2009 19:46:49 GMT

Hi Everyone,

We are just about finished with DI, and at the bottom of our road map of AALL0232 it says "See Section 8.0 for supportive care, and in particular Section 8.1 regarding evaluation of osteonecrosis (ON)." I mentioned this to our NP, and she seemed to think that this isn't really an issue anymore with the 'new' drugs they are using--but that we could do some sort of scan if we are concerned. I told her that yes, we might as well have the scan done just to make sure?

Does anyone here have any thoughts/experience regarding this? I'm thinking that if it's on the road map, it should be done--but I don't have a copy of the entire protocol (which I guess I should--but when I asked for a copy, they just made more copies of the papers I already had).

What are the symptoms for osteonecrosis with our kids and evaluation/treatment options?

Thanks so much!

Tonya

rash mystery solved- maybe it will solve your rash too

communityreply@lls.org — Fri, 13 Nov 2009 00:09:35 GMT

FYI- For 2 years now we were told that the rash around Eli's mouth and nose was a methotrexate rash and there wasn't a whole lot we could do about it. "A little hydrocortizone wont hurt" we were told by the onoclogists. We went to a dermotologist today who told us it was due to steroid withdrawls every month! He prescribed a non-steroidal ointment. We are hoping this will help. I know Eli can't be the only one who has been tolerating this rash, so if your kiddo is too, there may be an answer.

please pray for bryce

communityreply@lls.org — Sat, 09 May 2009 15:51:09 GMT

Hey i just wanted to let everyone know that bryce is on a ventillator and they are doing all kinds of tests on him. We don't really know whats going on yet but I'm scared to death. He's in critical but stable condition

FluMist

communityreply@lls.org — Fri, 04 Sep 2009 04:52:30 GMT

Of course my children don't get the Flumist vaccine since it is live and we have been told not to do that. But I am hearing chatter that Eli should not be exposed to anyone in his class whom has had it. Does that mean I need to send home a letter requesting that the kids in his class only get the flu shot? And if not, I have to pull Eli out of school for 7 days after anyone in the class received the mist? That seems extreme to me. What are your clinics saying?

Treanda side effects

communityreply@lls.org — Tue, 01 Sep 2009 01:50:21 GMT

If anyone can help. I am at my wits end.

My 80 year old mother has had CLL since 2003.

In 2007 she nearly died, but finally came back.

The CLL came back and she underwent 2 rounds of Treanda.

Then she got a case of redbugs - not smart, followed by what the dermitologist said was scabies.

She had that treatment but the rash spread to her entire body and then after about a month (she missed round 3) a horrific snkin condition on her hands.

It looked as though she had put her hands on a red hot ceramic cook top.

Her fever has always "cycled after the chemo" and then gone away - this time she had spikes of 103 which finally put her in the hospital where she is tonight.

The derm said it was definitely a result of the chemo

The infectious diswase guy said it was the result of an allergeic reaction to a drug.

The oncologist said that Treanda doesnt do that (but the website says skin problems, dermititis, blistering)

She has been in the hospital for 3 days and they have not been able to do anything for her and at least once a day she spikes to above 102-103

Now thaye have stopped all meds except prednisone and atavax (for the itching) and stopped IV fluids.

She is very weak, loss of appetite and very little dark urine.

I am very afraid and get no help - the doctor would not even called me back when I asked why he stopped the IV saline. He said through a clerk to ask the nurse. The nurse said she did not know.

(The IV was started by another oncologist on call over the weekend).

Has anyone else experienced similar events? She had another 102.9 this evening and they just gave her tylenol.

Would apreciate any input....

Two Years Today

sonyadaisy@hotmail.com — Mon, 15 Jun 2009 00:39:46 GMT

Today is my 2 year "Re-Birthday". I wanted to post because I feel like I know so many of you. I just wanted to say Thank You to everyone who is so caring and so supporting of all of us. I never had to search for a donor as my sister was a perfect match, and I am so Thankful everyday that she was. I feel like up here we are an extended family and when we lose someone, we all mourn, on the other side when we have happy news or reach a milestone, we are all there to celebrate. Thanks again!

Sonya

Another reminder that CML doesn't care if you're rich and famous

panicum@mchsi.com — Tue, 10 Nov 2009 12:04:55 GMT

Kareem Abdul Jabbar, an intensely private man, has come forward with his diagnosis, I've read, because he was made aware that many patients do not regularly take their medication and skip appointments with their physicians. He hopes to encourage others with this disease to take better care of themselves.

http://www.nba.com/2009/news/features/scott_howard_cooper/11/10/kareem/

Message was edited by: hannibellemo

Our Experience with H1N1

communityreply@lls.org — Tue, 17 Nov 2009 00:11:39 GMT

I know all of us are terrified of the swine flu (I now refer to it as pork chop fever for a little humor relief) and my nightmare came true this weeked. Alexis was admitted on Friday with a fever of 103. I already knew what she had since I was sick myself. I wasn't allowed in the hospital until they knew for sure she had the same thing and that was the longest night of my life. She had a terrible time with fever. It didn't break until last night. Her oxygen levels were of concern so she had to have oxygen until last night also. She was able to come today since her fever and oxygen levels were finally under control. We do have to have her counts checked again in two days because they have steadily declined and her hemoglobin and WBC are of concern right now.

I think it is hitting every child so differently. Our hospital has actually seen more more kids without cancer that are being hospitalized than the cancer kids. Of course, that is probably because we spend a lot of our time chasing our children with thermometers and tend to catch things faster

Petechiae with normal bloodwork

communityreply@lls.org — Tue, 13 Oct 2009 01:00:39 GMT

Hi. I was wondering if anyone has any experience with petechiae. If you read my other post, I've been dealing with 3 slightly swollen lymph nodes for 4 months. All of them at last check-up were less than 1.5 cm with two of them being very slightly less than .9 cm, although when originally found they were all between 1.3 cm and 2.1 cm. My primary care doctor, 2 ENTs, an endocrinologist that I was sent to due to a mislabeled FNA specimen, and a hemotologist all say that these lymph nodes "seem" benign. I'm hoping they are right.

I've noticed that since August I've been developing petechiae on my upper arms, side trunk, and back. When I originally started noticing them (I was looking out for them as they are a symptom of lymphoma) they were very few in number. They would fade within 8-24 hours but would come back in a different location within 2-3 days. While on vacation in late August I ended up with a long line of them extending from the front part of my trunk to 1/4 of the way on my back. All the dots were in a straight line. They too went away although I started getting reoccurances of them quicker...within 1-2 days. Now I am getting new ones everyday. They are larger in number most times although not as widespread as the pictures that I see online. Last night I freaked out because I developed them on my shoulder which is a new spot. I also had them earlier in the morning on my trunk. Those were almost faded by the time the ones on my shoulder appeared. I'm 100% sure they are petechiae, although they were not present when I went to see my primary care doctor who referred me to a hemotologist. They weren't present for that appointment either. However, based on the description of petechiae, tiny round blood spots that do not blanche and fade, I'm positive that these are petechiae. I have cherry angiomas and I know the difference. Plus you have those forever. I called my hemotologist's office and I have an appointment for Friday afternoon.

3 weeks ago the hemotologist tested my CBC w/differential and platelettes again (it's been tested numerous times this year) along with LDH, clotting time, and von Willebrands. Everything came back fine. I have copies of most of my bloodwork from this year and everything seems within range and fairly normal. Platelettes are always within the mid 200 - mid 300 range which is well within range. The only thing that was ever very slightly high was my MCHC which I was told sometimes happens but is ok since all of the other red blood cell counts are within range. My WBC was near the high limit of in range amount once at 10.4 with slightly high poly (I think that was the one) and slightly low Lymphs which would indicate an infection. I was never told of this so these numbers must be ok in the big picture and those numbers never reappeared. The only other striking thing I saw was that the last time my primary care doctor tested my CBC, he also checked my B12 level which was within range, however on the very low side at 274. There was a notation on the report that said 200-400 can cause neurological and hematological problems. I asked the hematologist about this thinking that since my platelettes are normal that the petechiae could be caused by a B12 deficiency. He didn't think so. He said that the B12 was ok but I read that only when it's above 400 is it considered really ok. My liver bloodwork also looks normal (bilirubin, alkaline, AST, ALT, creatine, etc.). My ESR was a 1 (very well within range) back in early March. LDH I was told was normal although I don't know the number. My lyme test was negative as was my ANA test (for Lupus I believe). It doesn't look like I have an autoimmune disease. I think that all of these doctors have covered all bases.

Does anyone have any clue what could be causing the petechiae? The only medication that I take is Zyrtec-D (allergy plus psuedephedrine). I wasn't taking this type of antihistimine when I started noticing the spots so I don't think that it's causing them. I haven't changed detergents or soaps and do not wear perfume. My deoderant is hypoallergenic and the spots aren't on my arm pits. The hematologist said that if I had lymphoma, which is my main concern because of the lymph nodes, the petechiae would be caused by low platelettes. Is this correct? I assume it is because this doctor is a hematologist oncologist so he treats this everyday. Should I request a bone marrow aspiration? Are there other blood tests that look for the cause of petechiae? I know it's ok to get a couple once in a while. I was told that that is normal. However, I'm getting them everyday and I'm happy that they fade quickly, but something just doesn't seem right.

Anyone originally have a false negative biopsy???

communityreply@lls.org — Wed, 20 May 2009 23:33:58 GMT

Hi everyone! I am writing on behalf of my 13 year old daughter. An enlarged lymph node was found on her neck below her jaw line in February. Since February it has increased in size almost to the point where you can see it without even touching it. She has no symptoms whatsoever, including anything that would explain the growing node. No cold, allergies, or anything like that. The node is hard and painless.

We just got the results of her FNA of the lymph node and it came out benign! Thank goodness! However, I am also somewhat of a sceptic as well. I know FNA's don't always catch all the tissue. We are following up with here ENT in September, but I am just so worried about it.

Any input you can give me would be greatly appreciated. Thanks!

Caity

Gleevec muscle pain-Q10 has helped me tremendously

communityreply@lls.org — Fri, 30 Oct 2009 16:50:40 GMT

Hi all,

I wanted to share something. I have been taking Q10 (400 mg 1x a day) for some time on the recommendation of my sister in law- who was a nutritionist. I recently ran out for a bit and within a week had very troublesome muscle pains (I am on 500 MG of Gleevec daily). It was the same aches and pains that I had forgotten about -- since I had started G. I went back on the Q10 and after just a few days I am pain free again. It just occurred to me that the one thing may have had something to do with the other-- so I went on the internet to look up Q10 and pain. I found that although no formal studies have been done-- informal ones state the "troublesome, myopathies that include the symptoms of muscle pain and weakness, some scientists believe that these muscle symptoms are due to a reduction of the vitamin-like substance, coenzyme Q10."

Q10 is mostly touted for "statin" takers but for me-- it works fabulously on the G side affects. Anyway-- it is worth mentioning. Have a great day!

Frustrated - need to vent!

communityreply@lls.org — Thu, 14 May 2009 00:26:00 GMT

Most days I can deal with it and it just rolls off my shoulders, but maybe it's because we're temporarily moving this weekend to the city where Domenic's hospital is and then starting DI next week, as well as preparing all the baby stuff for delivering out of town, but I've had enough of people looking at Domenic when we are out and about (ie grocery store) and recognize him as the boy with cancer and get the 'oh he looks healthy' with the look that goes along with it that almost mocks the fact. Because he looks and acts like a normal healthy 2.5 year old little do people know all the medications, pokes, chemo treatments, side effects and overall crappy times that go on behind the scenes. Do people expect us parents to take our children out when they are in no shape to do so, for everyday errands unless absolutely necessary? I wish more people were understanding of what living with this disease is truly like for our children as well as the impact on us parents before casting judgement. If they only knew!!

my daughters symptoms

communityreply@lls.org — Thu, 24 Sep 2009 00:35:18 GMT

Hello, I just wanted to find out from some you other moms what I should do next. My six year old daughter has had ongoing symptoms that are very concerning to me. to start with she came down with what I thought was a cold and she than had a severe nose bleed that required a trip to the er to get her nose to stop bleeding on arrival home she got a fever and than had another nose bleed. the fever continued for the week and also had five more nosebleeds in the weeks time.her primary doctor sent her to a ENT who gave her some nasal spray to use every four hours. the nose bleeds finally stopped but the fever contiued and the primary doctor put her antibiotics for what I do not know. The doctor did do a cbc and that showed mild anemia and a left shift. fast forward a week later and the fever is gone but she is now having night sweats and pain in her stomach along with dizziness and back pain. what do I do next? If I take her back to the doctor he will think I am a nut!! The strange thing is that sometimes she seems ok but than as soon as you think she is better she will start feeling bad again. please help! thanks again!

Suspicious CNS?!!

communityreply@lls.org — Fri, 03 Jul 2009 18:00:08 GMT

I received a phone call from the hospital yesterday (you know, the kind we all dread) that Matthew's LP showed four WBC and some cells that they could not make out, therefore inconclusive/suspicious. Since he had ITMX that day, they will not be able to another LP until next Friday. My question is: has anyone had this sort of experience with the LP's and is it at all possible that it is nothing? or a CNS relapse? He was CNS negative at diagnosis two years ago,(t-cell AL) and has been on LTM since Nov 07, with 10 more months to go....no real glitches, side effects, issues or concerns otherwise. Everything was tolerated exceptionally.

Of course, I am absolutely going out of my mind waiting til next Friday, as you can imagine!

Any experiences you have had or heard of would be greatly appreciated.

Shingles anyone?

communityreply@lls.org — Sat, 02 May 2009 18:01:33 GMT

DH and I had a little vacation this week and had a nice time, but came home with shingles. I've never had them before; they are on my face and eyelid. Went to the doctor this moring and got meds.

Anyone ever had them? How long did they last?

Teresa in Indiana

Newly diagnosed MCL, many questions, please review, help if ya can

communityreply@lls.org — Fri, 29 May 2009 09:29:34 GMT

ok, here we go, hope this dont put ya all to sleep.

1. how do ya pick a doctor, hospital, clinic? i figured i'd ask em if they drink much.

i'm thinking,

have you treated MCL before?

how have your patient outcomes been?

not sure what else to ask. any suggestions? do i need to worry about pissing the doc off? what shouldnt i say/ask?

2. about my cancer, i figured

whats my ki-67 #

is it blastic?

whats my beta-2 microgoblin?

not much of a clue what else to ask

3. has anyone gone thru the social security rapid determination path? any advice on this?

4. its late, i'm tired, my brain is scrambled from looking at webpages that i can barely understand.

any ideas on good reference material online? i've bookmarked

http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1573289 Lymphoma research foundation

http://www.cancer.gov/ National Cancer Institute

http://www.lymphomainfo.net/nhl/types/mantle.html Lymphoma Info

http://www.mantlecelllymphoma.org/site/c.mwKUJbNUJrF/b.4016519/k.BEEF/Home.htm Mantle Cell Lymphoma Consortium

maybe i've already got the best ones?

any ideas on what i should do next? i know thats pretty open ended, but i'm pretty much on my own here and any help is more than

greatly appreciated.

i must say, i've already found some encouragement from the posts i've read here. thank you

your new friend,

Dennis

Another Fun Questionnaire!

nicole_rc@yahoo.com — Sun, 27 Sep 2009 05:11:19 GMT

[#List]#
A) 4 Names people call you:
1. nicole
2. Sally (my family calls me this)
3. cookie, my nickname
4. sweetums

B) 4 places you have lived:
1. Canaan, IN
2. Indianapolis, IN
3.   New Orleans, LA
4.   Kenner, LA

C) 4 jobs you have had in your life:
1.   Working festivals and selling German Food with my mom
2.   Ponderosa steakhouse in High School
3.   My parents fruitstand
4.   Private High School

D) 4 movies you could watch over and over:
1.   Dirty Dancing
2.   Old Yeller
3. Dance with Wolves
4.   Steel Magnolias

E) 4 TV shows you love to watch:
1.   Three's Company
2.   Nancy Grace
3.   all Mystery shows
4.   Dr. Phil

F) 4 Places you have been on vacation:
1. Mexico
2. Gatlinburg, TN
3.   Wisconsin
4.   Myrtle Beach

G) 4 websites you visit daily (or semi-weekly):
1.   LLS - DUH
2.   mom's Caringbridge
3. my yahoo
4. facebook

H) 4 of your favourite foods:
1. tacos
2.   steak
3.   bratwurst
4.   sweets

I) 4 things you are allergic to:
1. lima beans
2.   cleaning toilets
3. picking up dog poop
4. doing dishes

J) 4 of your siblings names (if you have any):
1.   shanna
2.   sean
3.
4.

K) 4 places you would love to travel to:
1.   Australia
2.   Rome
3.   Paris
4. Hawaii

L) 4 of your pets:
1.   Titan
2.   Cubbie
3.   Duke
4.   Sox

M) 4 things you want for your birthday/Chris

tmas this year:
1. Nothing.. it's going to be a depressing year:( Wished we just had mom for the holidays
2.
3.
4.

Stroller for older children?

communityreply@lls.org — Fri, 08 May 2009 16:03:06 GMT

My granddaughter, Lily, is 8 years old. Her mom, Larisa, and I like to walk together in the afternoons. However, we can't leave the kids unattended, and it's often late before Lily's dad gets home from work to watch them. So, we were wondering if any of you know of a stroller for older children. Lily is 8 years old - probably weighs around 50 lbs. It would be good for her to get out and get fresh air, but the chemo has made her legs too weak to walk very far. So we'd need a stroller strong enough to carry her weight plus large enough to fit her height. And we'd like one that isn't too difficult to push. I've Goggled them, but haven't yet found anything that looks like it might work. Any suggestions??? THANKS!

T-Cell Non-Hodgkins Lymphoma

communityreply@lls.org — Thu, 09 Apr 2009 14:27:15 GMT

Still looking to find others with this condition, or who have survived this condition. My husband's doctor mentioned there is a 70% chance it could come back. If it does, they may not be able to cure him a second time. Anyone else receive the same information?

Hydroxyurea

communityreply@lls.org — Sat, 29 Aug 2009 01:42:02 GMT

I was diagnosed with CMML three years ago. Initially my platelets were low. But they have steadily risen and are now at 799,000. I will be starting hydroxyurea at 500 mg per day. All my other counts are normal.

I would appreciate any comments from those of you who take this drug. How well is it tolerated? What are the most common side effects? Is it difficult to titrate the dose to decrease the platelets an adequate but not excessive amount? And were your other counts affected?

Thanks in advance, Vicki

Lost husband at 52 years...grief process

communityreply@lls.org — Fri, 02 Oct 2009 01:04:45 GMT

My husband has just lost his battle against T cell lymphoma on September 15, 2009. He was diagnosed in late April with successful chemo treatment and had his stem cells collected for an Auto transplant for beginning of Sept. He started having leg weakness and horrible pain. A PET found his lymphoma to be back and had spread to his CSF and brain. We have 4 children, with the youngest age 6 so of course we wanted to fight. He underwent more chemo was in the ICU for 2 weeks but then was going to go on with an auto and allogenic transplant. We found out that the lymphoma had continued to spread on a Friday. We took him home on Saturday and he passed away with me on Tuesday am. We are people of solid christian faith so I know that he is in a better place. Now a little more than 2 weeks have passed and I can't grasp the reality that my athletic, young (52) husband is never coming back to me and the kids. Each child is processing differently and I can hardly get out of bed in the morning much less help them along their grief. If someone can help lead me down this terrible path I'm on please respond.

Nupagin (sp?) in ALL

communityreply@lls.org — Wed, 07 Oct 2009 05:20:28 GMT

Hi all,

Our onc was just here doing rounds, and was going to let us go if Justin's ANC would have risen a little (yesterday 48, today 36--post fevers). He mentioned possibly using Nupagin to boost wbc but said they don't like to use it in ALL for some reason, although he doesn't know why? Do you guys have any knowledge on this that I can pass on? :). He is also sending out for his IgG levels. We were supposed to start maintenance today, and he said this is actually very common right before maintenance. Thanks for your insight,

Tonya

Another celebrity with blood cancer

communityreply@lls.org — Fri, 20 Nov 2009 14:38:16 GMT

Check out this news:

http://www.abc.net.au/news/stories/2009/11/17/2745513.htm

My brother with AML M7

communityreply@lls.org — Fri, 16 Oct 2009 17:22:06 GMT

My 48 year old brother was diagnosed with AML (M7) in March 2008. He underwent chemo a couple of times, but they could not get him into remission. He had many complications( high fevers/short paralysis) and allergies to the drugs taken with his chemo treatments, and they were only able get his blast cells below 10 percent- not 5. He did not qualify for a bone marrow transplant, as they feared further chemo treatment would have damaging effects....and his blasts cells were still too high. After his hospital stay, he declined further treatment and decided to enjoy his life to the fullest extent- and boy, has he ever!

It is now October 2009, and his blood counts have been within the normal range all this time. He just went to the doctor this week, and his WBC and neutrophil count fell - however, he just finished fighting off a bladder infection. Do you think this is the turning point- his blasts are returning...or can regular antibiotics lower your WBC and neutrophil count??

Immunoglobin

spookyproud@aol.com — Thu, 16 Jul 2009 13:13:40 GMT

Kaeden has been getting the IVIG since Nov 08. It has been a godsend and he hasnt been ill since. My question to the parents of children who have had to get the IVIG is this:

How long did they receive it past finishing their chemo treatments?

Kaedens doctor thought that he wouldnt need it past February of this year. Now here it is July and he is still getting it every 6 weeks. He thought it would be a temporary problem. We really think that Kaeden had low immunoglobin from the beginning of LTM.

Does anyone elses child still need the IVIG after finishing their protocol??

Thank you for any help.

Cheryl

My mother was diagnosed with AML M2 on July 14, 2009

china257@aol.com — Thu, 23 Jul 2009 03:55:18 GMT

This all started on July 11, 09. My mother was complaining of feeling fatigue and just all around not feeling well. She decided to take a rest and when she woke up she felf better and wanted to work. I gave her a ride that night. The next morning (July 12) I went to pick her up and she told me around 4am that morning she was running a temp and having chills. As soon as we got home she had a temp. of 102. I was not taking any chances and told her we were going to the hospital. As soon as we got her there they did the same things they did for her in May 2009 when she had pneumonia. When my mother found out she was being admitted she wanted to get out of there but thank god she decided to stay. They brought her up to the oncology floor and I thought the Medical/surgical floor must be full, it really hadn't clicked. I have to add that my mother and I are both RN, BSN (she has been a nurse for over 13 yrs and I've been a nurse since Feb. 2009.) We met in the ER the admitting medical doctor and I thought that was the only doctor we would see. Later that afternoon another doctor came in and he told me his name, explained the labs, and why he was there. He told us there was a possibility my mother has leukemia. As I am writing this I remember how devistated I was and full of mixed emotion. The doctor was trying to calm me down by rubbing my back and looking at my mother. My mother then asked if she was going to die and he stated only if it doesn't get treatment. She had no tears and just looked at the doctor and me. He then told us that the following day she would get a bone marrow biopsy. Since I couldn't control myself I ran to my floor that I worked on and cried hysterically. I couldn't believe this was happening to my mother. All the nurses I worked with gave me so much love and support. I tried to put myself together but when I saw my mother again it all came rushing back. I didn't sleep that well that night.

On July 13 her primary hematologist came in and told us how the biopsy was going to happen and asked if some students could come watch. My mother agreed and the had her place on her right side. He numbed to area with and made a few incisions he then placed the instrument in and warned my mother the next 4 sec will be the most painful which was the aspiration part. Sure enough he counted and my mother screamed and I tried to stay strong but I started crying because my mother was in so much pain. When all was said and done the doctor told the students that typically that doesn't happen and part of the reason is my mother anxiety was high. He then told us it would take a couple of days before we would get the result. So my mom and I was enjoying our time together watching TV.

The following day July 14 around 6pm her primary hematologist came in with her chart sat down and straight forward told us that it was Leukemia. As he was telling us he was writing in the chart and asking us if we had any questions. We were both in shock, speechless, and devastated. He told us that she would start chemo on July 16 at the hospital for 7 days. We thought it would be an out pt and my mother asked if she could leave on the 15th because she wanted to put her paperwork together. He agreed and would talk to the medical doctor. She was able to leave on the 15th for overnight. When we got home we were singing Karaoke and having a good time and seemed like nothing had changed.

July 16, we arrived at the doctors office and was told that we would be in the hospital for a month. One week of chemo and three weeks of monitoring for possible infection. We were both shocked but we knew it needed to be done.

July 16-22, she was doing well for the first two days but after that we have been fighting with fevers. I know the highest she has been was 104. They have been giving her tylenol, and I have been getting ice in a big ziplock bag with water and soaking washcloth and placing them on her forehead and under each arm. She still has energy to get up and go to the bathroom and has been walking the hallways with a mask. Also, on occasions I have been waking up with her cleaning the room.lol. I know she will beat this and is a fighter. On July 21 she received two units of blood and this morning she was about to take a shower and we found rashes all over her abdomen, some on her arms, and a little around her neck and back. They gave her some benadryl and that seemed to have helped. Her platlets went up but her H and H stayed the same. Today (July 22) they hung the last of the chemo and by tomorrow night around 8:45 pm she will be done. We learned that they will do another biopsy in three weeks but they are sure there will be more treatments to follow. I am also getting a second opinion at the Seattle Cancer Allince. I will be back soon to let all of you know what else is going on.

MUD-BMT after relapsed AML

communityreply@lls.org — Mon, 01 Jun 2009 07:00:49 GMT

Hi All,

I was posting as SC on the previous boards. A donor finally stepped forward after two of them on two different continents backed out citing personal reasons. I received a bone marrow transplant from a matched unrelated donor on the 25th of April 2009. A 38 year old gentleman, who may have saved my life.

It was a difficult 30 days. Broke down and almost gave up many times during the Bu/Cy and the gut wrenching mucocitis that followed, and the morphine to drive the pain in the gut away. They day of the transplant Day 0 was surprisingly calm! I slept.

Its now day 36 post transplant.There was acute skin GVH confirmed via a skin biopsy day 14. Renal impairment with high creatinine and elevated liver enzymes day 14. Another fortnight in the hospital with immunosupression and steroid, the GVH is under control for now, the renal function and liver functions are returning to normal.

Day 36 post transplant, a little scare with falling platelet counts. Hemoglobin is stable. The doctors say ABO mismatch caused both Hb and Platelets to fall and not one.A bone marrow aspiration is scheduled for day after tomorrow. Platelets were good at 300 for 30 days after transplant and have started falling since last week, today they are 65. Anyone out there with similar experiences with platelets and recovery from here on out?

For those thinking about the BMT as a therapeutic option after so many chemo rounds, relapse, complications: its difficult but not impossible.So far!

Other than the worrying platelets at this point, feeling tired but well. Engraftment bone pains are sometimes difficult to bear at night.

Thanks for the encouragement from all of you on the other board. Could not have come with so much resolve and strength without the crutch of your words.

Newly Diagnosed/Starting Gleevec TODAY

communityreply@lls.org — Wed, 02 Sep 2009 22:58:13 GMT

I feel fortunate to have located this discussion board and hope that I can become acquainted with you---I'm already inspired by your experiences. I hope you'll understand why I'm here.....I'm a poor veterinarian, and while I'm not the patient, I'm the "medicine person" in the family.

My wonderful Significant Other, Bill, went in for a routine annual physical and was discovered to have a WBC count of 93,000. That was about 10 days ago, and within a week, he had been referred to a terrific hematologist/oncologist. His WBC count had risen to 135,000 or so within that week (!), and the oncologist started him on 1000 mg of hydroxyurea daily. Count was down to 82,000 in 4 days, and hopefully is still dropping.

Bill is on Medicare and has AARP's supplemental insurance, which will only pay 50% of the cost of Gleevec for 6 months...then, hopefully, it will review the situation and continue to pay beyond that time, but there's no guarantee.

However, 30 tablets of 400 mg Gleevec is $3900 or thereabouts at Costco (good God!), and we can't afford to pay even 1/2 of that on a month-after-month basis.

Of course we don't know if this will be the drug for him, but I've just got to ask:

1. How the heck do people afford this drug?

2. Does Medicare Part D (rather than the AARP drug supplement) cover Gleevec?

3. Is it possible to obtain Medicare Part D after diagnosis, presuming it is better coverage?

4. Has anyone tried taking the generic version out of India?

I hear people talk about the donut hole and their annual out of pocket expenses being around $5,000, but if we have to pay $2000 a MONTH for this drug, where the heck is the $5000 donut hole?

Sorry to put a dollar and sense spin on it, but honestly, after being hit over the head with a totally unexpected diagnosis of CML, this is really throwing us for an additional loop! He's 69 years old and hopefully will be around for quite awhile...he feels fine and we're hoping for the best.

Thanks so much for any info you can give me....he's really freaking out that he's going to bankrupt us.

Beth

"Email Alert for Approved Content"

tex_silver@yahoo.com — Tue, 19 May 2009 20:57:29 GMT

Has anyone received this nonsense?

"Hello,

You have received this email because the content you posted below has been approved by our moderators..."

Does this mean my post was reported as abusive? Lordy, what sensitive people we have posting.

I was going to post the link that I was so bad on, but it's gone. Guess someone didn't like the SPAM>

How bizarre.

Sedative for BMB???

sandimartini47@yahoo.com — Thu, 16 Apr 2009 23:38:42 GMT

I was just curious; how many of you have doctors that give you a sedative or something before your bone marrow biopsy. I took .5 of ativan myself but my doctor refuses to give me anything else for the procedure. sandi

BMB #2

communityreply@lls.org — Thu, 19 Nov 2009 15:11:59 GMT

Well here i sit waiting for tomorrow and BMB #2. Oh, and now I have a new doctor in atlanta, he wanted me to have the 2nd BMB on tuesday at our 1st visit! My old doctor never moved this fast and its reassuring and is putting a fear in me like no other.

I have a feeling that the people in my life are relieved to know that i am being taken care of properly now. i don't know, i can't get this nagging feeling out of my stomach and heart.

His words were "your 1st BMB was inconclusive, we know that you are a sick girl, now we just have to find out the cause and get you on a treatment plan." Well thank you! Somebody finally see's that I am sick and that my WBC count has been at 1 since June.

I am rambling i know, but why do i feel like running and screaming? I'm having emotions I've never had before, and I am suprised out how much of it is anger. And i don't know why i am angry. I'm just waiting for someone to tell me to get over it! It will take every thing in me not to blast them verbally!

I know i will be sedated and i went through one already, but like a 2 year old having a tantrum, i want to scream! Such strong emotions, wow, i'm not use to feeling so much at the same time. Maybe i should just go outside and scream! Scream my bloody head off! LOL! My neighbours will love that!

Thanks for allowing me to vent, and no, I am not some raving lunatic, I just needed to get that out to the only people I know who truly understands what i am feeling. Thanks for being here for me by the way, you guys are the best!

-caoimhe

Newly diagnosed just a month ago :)

communityreply@lls.org — Thu, 06 Aug 2009 00:29:52 GMT

I'm very new to all this & just full of questions.

First off, I am the youngest patient on my floor...I'm 18.

What is this I hear that the chances of surviving AML is like 21%??

I finished my first round of chemo a couple weeks ago & already 97% of the cancer cells are gone.

I'm getting another BMB pretty soon & will be starting my second round of chemo in a week er so.

I know i'm getting either a bone marrow or stem cell transplant, hopefully one of my sisters will be the donor,

& after that, they say i could be cured...simple as that eh?

so why a 21% survival rate?

& another question...why is it taking so long for my white blood cell count to go up?

it's been sitting at 1.3 [im guessing that 1,300] for 2 weeks now & has still not gone up.

What's the deal?

Thanks for any answers!

Anyone worry about your non-cancer kids?

communityreply@lls.org — Thu, 12 Nov 2009 02:30:18 GMT

Now that I type that it sounds like such a dumb question. Of course we all worry about our non-cancer kids. Maybe not in the same way, but I am sure we all do. I've had a rough week and just need to type it out I guess. Last week, our 3 year old got the flu. Two day later he felt fine. Then the youngest got it--he's almost 2. His fever went a full 2 days. Then he seemed better on Sunday. Then on Monday afternoon he started acting tired and out of sorts again. I took him in, but the doc said, if he had H1N1 (which they did not even test him for), he would probably still feel crummy for days. No sounds in his chest, no ear infection, throat looked good. Tuesday morning, the temp was back, only not as high. Just 100 or so. Last night he seemed on the upswing again. Slept good. But this morning he was cranky and whiney again. Low grade temp. So I brought him to the other clinic (the one our reg. doc is at) and she checked him and I out. I also came down with sore throat, cough, aches, but no fever. She looked in his ears and found one that was infected. Since I was not running a temp, she said I probably had a different viral bug and to treat with fluids, decongestants if necessary. A NORMAL person would have been happy with that diagnosis I think. But not I said the momcologist.

See, 2 years ago when Seth was diagnosed, he had a temp for 5 days (no other respitory symptoms though) and then the first doc said ear infection and sent us on our way. Three days later we found out he had leukemia. So that is where my brain was today. Since this is our regular doc, she knows my concerns and our history and she knows right where my brain was going. So she suggested quick CBC finger poke for our little guy. Just to help us all have a better rest of the day. Of course, he would not cooperate with that and fought the nurse and I tooth and nail and we could not get any blood in the vile. He bled for about 15 seconds, most of which ended up all over she and I and then his blod clotted and he wouldn't bleed anymore. Guess that's a good sign. So we opted not to do the CBC because I could not see trying to do an IV blood draw on a 2 year old to calm my fears. Seemed a little over the top.

Anyway, we come home with antibiotics for an ear infection and I was just in the lowest of moods. He and I took a nap snuggled together in our favorite chair and all I could think about was how I might have another kids with cancer. Like 2 isn't 2 too many already.

But after a nap and crackers and milk and a tsp of tylenol and antibiotic.....my little wee one is feeling good. Running all over the house and playing with his brothers. I just hope he feels this good in the morning.

Thanks for listening...

Processed Meat Link to Cancer

communityreply@lls.org — Sat, 29 Aug 2009 17:06:51 GMT

http://www.silobreaker.com/processed-meat-cancer-link-5_2262534461671342126

I was feeling pretty good about this not being true when djlawman posted a link dispelling it, until I saw the story on the news last night. Now I'm starting to think there is some truth to it and we are going to have to change our eating habits, although there is no mention of a link directly to Leukemia.

Thoughts?

Does it usually take more than one biopsy to diagnose?

communityreply@lls.org — Mon, 16 Nov 2009 01:35:37 GMT

I have an elevated WBC of about 15,000. I recently had a bone marrow biopsy that didn't turn up anything although it said suspicions of myeloprofeliferative disorder.

All cells are normal and I am negative for JAK2 and BCR-ABL mutations. My doctor still seems to think I may have something. Why wouldn't the biopsy show evidence of the disease if I had it?

How many biopsies does it usally take to be diagnosed?. I also have other issues like shoulder bursitis that I am hoping is causing the elevated count.

Thanks for your insights.

Husband Newly DX W/ blastic plasmacytoid dendritic cell neoplasm (anybody heard of it?)

wwhiskerss@hotmail.com — Fri, 05 Jun 2009 03:48:19 GMT

Hi All

Well it all started with back pain. My Husband 39 thought he had pulled a muscle in his back helping a friend tear down a shed. He went to his primary and was sent home with pain killers. The next week we called the doctor because the pain had moved into his chest and he said he was having trouble breathing they said "go to the ER" The ER doctor told him that sometimes back pain can radiate into your chest "here's some more pain killers". another week goes by and the pain in his chest gets worse (excruciating) so off to the ER we go. hours & hours go by and test after test show nothing. The pain was so bad the pain killers were wearing off after about 20 min. Finally 13 hours later he was sent to a room on the oncology floor (ironically that was the first available bed) 2days later they do a Bone Marrow Biopsy because all 3 of his counts are low (don't worry yet the doc said) We waited a couple of days and the doctor said he was worried about Lymphoma but were going to send the biopsy to Johns Hopkins for further testing. He was admitted Friday April 17th , on April 28th (my -b-day) The doctor told us he had NK Cell Leukemia (Natural Killer Cell) but Johns Hopkins was going to test further. We got sent to University Of Maryland Medical Center in Baltimore that night. UMM did their own BMB and told us the cancer cells were dead (from the Prednisone) given to him for the chest pain which by the way relieved his symptoms immediatley. So anyway the official diagnosis is Blastic Plasmacytoid Dendritic Cell Neoplasm , which is VERY RARE and according to the Internet not curable and usually presents with skin lesions (my husband didnt show any) There are very few cases reported and not very good outcome, I tried to study it on the Internet because the doctors cant really tell me anything cause they don't know ( they are going by the other cases) He is doing EPOCH Chemo and has just finished up his 2nd round. He does 96 hours every couple weeks.The plan is to do at least 6 rounds and then a BMT. He is doing very well the only side effects he has is his hair loss and sometimes headaches from the spinal taps. I have only found 1 new case which is actually very close to where I live . He got diagnosed in Nov and has already had his BMT they are treating him for leukemia ,they say they are treating my husband for lymphoma (I forgot to mention that my husbands was only in his bone marrow) We think we caught it very early. Anyway I would really like to find out more info on this if anybody has heard of this and anything else you would like to tell me

Thanks for listening

Vicki

Food Allergies Post ABVD

communityreply@lls.org — Tue, 07 Apr 2009 00:45:50 GMT

Hello everyone. I haven't been on these boards (old or new) for a year now. I guess I was trying to "move on" after treatment ended. But I have wicked food allergies post chemo and haven't been able to move on very much. Thankfully my energy is back up but I have been so sick for the entire year post treatment from food.

Has anyone else experienced this? I'm allergic to milk, soy, peanuts, pork, cranberrys, sesame, peppers, orange juice and more and discovering more allergies all the time.

If you can give me hope, I'd love to hear from you...or hear what you've done to adapt.

Thanks!

cousinlynda

Preparing to say goodbye

communityreply@lls.org — Tue, 27 Oct 2009 20:24:45 GMT

Elliott was diagnosed with mast cell sarcoma. They are going to try to up his steroids and eliminate the immunosuppression, but they have basically said 2-6 months at best.

My Husband has Myelofibrosis with Myeloid Metaplasia - Questions

communityreply@lls.org — Fri, 20 Nov 2009 00:17:59 GMT

Nov 19, 2009 5:18 AM

My Husband has Myelofibrosis with Myeloid Metaplasia - Questions

My husband was diagnosed with Myelofibrosis about 12 years ago. The illness was dormant until December of 2008. Since his spleen and liver was SOOO enlarged the bone marrow decided to make cells in the sack of his heart. He then had an operation called pericardial window and the doctors removed 750 cc out of the sack. We found wonderful doctors at Mount Sinai School of Medicine in NYC. He had a RIC allogeneic stem cell transplant on 09/04/2009 (our 27th aniversary). I would like to meet people who have gone through the same to ask questions. He is going through some Host vs Graft and has CMV and H-Pylori viruses also. Thanks for listening.

Remember me? I'm baaaack

gwenique@hotmail.com — Tue, 03 Nov 2009 05:13:08 GMT

For those who have been around a while, I was known as "gwenique" on the old forum. I'm trying to ditch that name lately...

Anyway, I was originaly diagnosed with hodgkin's Feb 08--- had ABVD and radiation. I was active on the forum throughout the whole process.

I moved, got married and had my first follow up in December 08 where lymph nodes showed cancer again.

After a biopsy, I was officially diagnosed with Thyroid cancer even though I couldn't beleive it wasn't the Hodgkin's again.

It took a long time to get my surgery to have my thyroid removed, but finally took place and was treated with radioactive iodine to treat the thyroid cancer. This ended in August, 2009.

A week after my iodine treatment, did another scan and found a 3"x3" mass in my chest. It was so large, it collapsed my right lung (and many other complications that are too lengthy to get into).

ANYWAY-- After a few biopsy attempts came up with just scar tissue (thank you radiation treatment), I finally had a positive diagnosis of the Hodgkin's returning. My doctor and I were anxiously awaiting this result just so we could get treatment on the way. Last week I completed my 4th cycle of ICE which I handled very well. No sickness or anything. More fatigue than with the ABVD though. It was different having to do chemo for 3 days straight as an in-patient, but time always seemed to fly by.

My port was infected so a day after chemo was done, last friday, I had the port removed. I am now nursing as open wound on my chest-- I hope my husband has a thing for scars as I am getting too many to count!

It's time for me to relax now and wait a few weeks before I get another PET scan. After that, I am likely onto Stanford for a bone marrow transplant, even though I didn't have bone marrow involvement either occurance. My oncologist is pretty sure I'm done with ICE as a scan after the 2nd treatment showed some decent progress. I am hoping this next PET scan will be all good news too.

I was always 100% optimistic last year going through my initial cancer diagnosis and treatment, the thyroid didnt phase me at all either. With a 3rd cancer occurance in just over a year it's a little harder to think I am done with this. It's been my life since december 07-- we're talking 2 years in the prime of my life (i'm 28) taken up by this annoyance. Luckily it didnt cancel my wedding, but it's making a huge dent in my career and finances. I should be saving for a home, I should be climbing the ranks... but instead I am in a hospital or home in bed. I don't fear death, I just am sick of this. Please wish me luck that this is the last time I have to deal with this! I know it sounds silly to be worrying about money of all things when I should be worrying about staying alive, but I cant help it. All i can think about is getting past this and living a normal life again.

Has anyone had chronic bone pain after rituxan?

communityreply@lls.org — Sat, 07 Nov 2009 02:50:34 GMT

Diagnosed 5 years ago with stage 4 low grade NHL. Treated with rituxan only. Last of 2 series 2 years ago. With 1st tx had severe bone pain responsive to narcotic only. Given high dose steroid with subsequent tx resulting in no pain with infusion. Since that time have had increasing non-malignant bone pain responsive to narcotics only. My Dr @ Mayo Jax has never seen this. Feels like it isn't being acknowleged because not being reported by drug company, literature, or other medical communities. I know there is a community of other patients with the same or similar symptoms due to other web sites. Anyone here experience this? Really need a place to help manage this that has experience with it. Any suggestions in the Floride area or any area?

Husband goes into hospital tomorrow for BMT...very scared...

pyewackit22@yahoo.com — Fri, 16 Oct 2009 02:07:49 GMT

Hi,

My husband goes into the hospital tomorrow for his week of chemo and radiation then for his BMT the next Fri. We had a meeting with the transplant doc. today. Basically he said my husband has a 40% to 50% percent chance....he has the 11q23 gene and flt3 mutation which is not good. I am sooooo scared and just can't beleive it still....how can life be so freaking brutal???

I know we should happy he went into remission and his brother is a 100% match, but I just am pissed off this is real for us. I am in awe of you guys who went through it and are still SANE. I feel like it is just a nightmare in which we won't wake from.

I am worried about everything,,,,the transplant itself, GVHD, relapse...all of it....My husband is very sad and anxious and it is heartbreaking for me to see him so worried. I just HATE HATE HATE HATE this!!!!!!!!!!!!!!!!!!!

How was your child diagnosed?

communityreply@lls.org — Sat, 23 May 2009 04:31:07 GMT

Just curious....how was your child diagnosed? What symptoms did he/she present with? In hindsight do you see anything else that you now know to be a sign but didn't think was alarming at the time?

Emma was diagnosed extremely quickly. I just remember playing video games with her in the living room after work and noticing purple bruising in a very odd pattern on her arm. I stopped and asked her to come take a bath with me so I could take a closer look. I ended up calling her dad from the tub to tell him I thought she needed to go to the pediatrician the next day. Then I took pics and emailed them to my sister. By the morning, she'd googled and found the word 'petichiae' and we spent the morning (me at work, her at home) on the phone worrying ourselves silly and finally deciding it had to be blood poisoning from a cat scratch Emma'd received.

We took Emma to the doctor at lunchtime and the nurse did a CBC. When the doc finally came in, she just said she'd talk to us in a minute, didn't want to alarm us, but that she had St Jude on the phone and they needed our cell number. So we got to sit in there with Emma for about 10 more minutes trying not to cry. When she did come in, she showed us a bunch of numbers on the computer but all I remember was her platelets were only 14. I will forever be grateful that she did the CBC and recognized what we were dealing with.

We had a diagnosis within a couple of hours of being at St. Jude...It was about 6:30pm. She was admitted, got blood/platelets/chemo that night. Whew.

In hindsight, I saw signs a full month prior. Emma had been to the beach with her dad and came home with 'freckles' that moved around. They were never where I thought they were when I looked again! Then she got kinda pale, but I thought her tan was fading. She was cranky and more tired than normal, but I attributed it to the recent change in households when her dad and I split up three months before. She had a four-day fever with no cold symptoms 10 days earlier, but she'd had that one time and the doc said sometimes a virus just manifests as a fever. All of this now is crystal clear, but at the time there was nothing that would have clued me in before the bruising started. I can almost pinpoint the date that her body first showed signs of cancer, even when I look at pictures of her I can say 'she was sick on this day, but not on this day.'

I asked the doc who diagnosed her how long she'd had this and he said about three weeks, maybe longer. It just blows my mind that my kid had cancer and I had no clue whatsoever. So much for mother's intuition!

Epratuzumab for CD22+ Bcell ALL

communityreply@lls.org — Sat, 14 Nov 2009 18:23:29 GMT

Any parents out there that have experience with using this drug as part of their childs treatment protocol? Or are there any specific side effects or symptoms that you attribute to using this drug. Epratuzumab has been in testing with several different clinical trials over the past year, and we are considering it as part of a trial at M.D. Anderson to bring our son into his 4th remission.

Thanks for any info.

Mel

Stable Splenomegaly and Stable Enlarged Mesenteric Lymph nodes, what does this mean?

communityreply@lls.org — Sat, 14 Nov 2009 05:03:33 GMT

I have had enlarged mesenteric lymph nodes and splenomegaly for nearly two years knowing, and the last ct scan shows that for the last 6 months they have remained stable. I also had nodules in my lungs that the last ct did not pick up due to the fact that it was only an abdomen and and pelvic ct scan...still wondering about that?, but any road I still have enlarged mesenteric lymph nodes and enlarged spleen but stable from 6 months ago. What does this mean?

LTM Advice?

communityreply@lls.org — Thu, 15 Oct 2009 15:47:12 GMT

Hi everyone!

Justin just began LTM yesterday (woo-hoo!) and we are super excited! However, I am feeling a little out of sorts after having so many restrictions for so long as to how to relax a little I guess?

Here are some of my questions for you all:

Do you allow all foods, even veges/sodas from fast food restaurants?

Do you allow your children to go to all public places?

What about sports like soccer -- do you allow with the port?

Thanks for any and all advice! I was just bragging about the expertise on this forum to our nurse at clinic yesterday!

Tonya

Doctors - Patient vs. Wife

communityreply@lls.org — Fri, 17 Apr 2009 02:59:35 GMT

Has anyone had trouble with their spouse's doctor deciding that keeping the other half updated on changes in treatment, or results of scans, is just not needed, when the patient has cognitive issues?

As many of you know, my husband has had significant cognitive function issues. His mind has improved, but is far from being better. Recently he was discharged to a rehab facility and then brought back after they found that the tumor in his brain was slightly larger instead of smaller. I am continuing to work and so far I have been his health care proxy due to cognitive issues. After giving me the bad news, the doctor decided that since my husband was doing somewhat better cognitively, he didn't need to let me know what changes they had made in his treatment and what this meant long-term.

I had asked my husband and he got some of the facts right, but some of them wrong. He aslo had no idea of what the ramifications were. In his mind it was all good, and the reason he was brought back was just a minor glich. When the doctor finally called me 3 days later, he asked me to tell him what Randy had told me and then clarified things. He feels that since he got a lot of it right, then I'm no longer needed to help with medical decisions.

To me that felt like a slap in the face. First of all, I disagree with the doctor. I talked to patient advocacy about it and she said she probably couldn't do anything about it, unless my husband was declared incompetant to make decisions. Well I don't think he's incompetant, but he far from being able to relay messages and explain to me what's going on. I don't know what to do now. The doctor said he would try to meet with me at Randy's room once a week, but he tried to set that up before and it didn't work. I tried to explain to him that I would be OK if someone else relayed the message to me (N.P. or Nurse, or whomever), because I understand that he is busy, but I guess there are privacy issues with that.

The nurses also can't relay medical results to me for the same reason. Yet he makes sure to mention when he talks to me, that if the cancer grows in spite of treatment, then there is no more they can do for him.

Frustrated and scared.

Sometimes I feel like a nut!

spookyproud@aol.com — Fri, 06 Nov 2009 15:36:31 GMT

Sometimes I dont~ Just had to finish it.

Anyway during that first 9 months I thought I was getting everything (info),understanding it and writing it down. I am the only one that participates on any blog of Kaedens and 100% participation at his clinic visits/hospital stays. Of course I tried to write down everything on caringbridge.

During that "FOG" of induction I thought I was walking away with a "memory" of everything that happened. I dont know how many times I have written that Kaeden had over 5% blast on day 29 BMB.

To my horror this last weekend I found out what that meant. (I always noticed the silence on the boards too-lol) I also noticed that Kaeden didnt do the extra two weeks of induction. I was pretty hysterical and had to call Serena (teamDonavynns mom) and have her calm me down. Incredibly she was able to reason with me and tell me to wait until I spoke with the doctors on Thursday (yesterday)

To my amazement, relief, etc~ I WAS WRONG! Somehow, someway I had gotten it in my mind that his 5% blast were on day 29 when it actually happened on day 8. On day 29 the F.C show no blast in his BM. The doctor went over every lab result to prove it to me.

What have I learned? I am not supermom, superhuman and I dont have a memory like I used to (I have not admitted this to anyone other than the parents here and I will refrain from admitting it to my family). I also learned that I shouldnt panic before I meet with the oncologist and go over the past results. (like thats going to happen-not panic)

I also try so hard to keep positive thoughts (my cup is half full) but I cannot help myself waiting for the other "shoe to drop"

So I hope my sharing this story helps other parents in some way~

Cheryl

Where is KCWester

communityreply@lls.org — Sun, 26 Apr 2009 17:34:37 GMT

I am wondering where Karl's wife is as I want to keep the discussion going on the COH SAHA trial. I had a great scan last week - finally shrinkage!! I started cycle 10 on Tuesday. KC, if you are hovering on the site, please post! xxxlaurie

Need perspective: length of hospital stays for low ANC

communityreply@lls.org — Thu, 29 Oct 2009 00:48:34 GMT

Graham (pre-B ALL, dx 2/09, age16 now) was admitted a week ago Sunday for high temp, infection somewhere. He is at the tail end of DI and his ANC was 8 on admission. This is our only admission for this kind of thing. (I know we have been very fortunate!) Evidently, he was pretty bad at first but rebounded fairly quickly for the most part. He's been afebrile for about 8 days now; on day 11 of IV antibiotics. His platelets and HGB keep dropping, requiring various blood products about every other day. But the biggest problem is his ANC. They want it up near 500 before they will discharge him. He is feeling great, but for that elusive number! Even with daily Neupogen (never had that before, either), his ANC was at its highest of 239 on Sat, 178 on Sun, 174 on Mon then 49 on Tues! It rose modestly today to 85, so maybe we are on a good climb...Anyway, I just wondered what you've experienced as to how long it took to get these numbers up (length of hospital stay), what are your hospital's parameters, experience with Neupogen in similar circumstances, etc.. I would think he could recover at home where there are (theoretically, anyway) fewer, or at least less potent, germs than a hospital. We are going stir crazy at this point so just looking for a little input... Thank you again!

I found the WALL. Boy am I embarrassed.

communityreply@lls.org — Sat, 29 Aug 2009 02:09:56 GMT

I probably shouldn't visit the blog site on a daily basis because I think less than 24 hours ago I was saying how good prednisone made me feel ( I guess secretly hoping I might sneak by the CRASH), but today it happened .......... crash big time. I was in bed most of the entire day. I guess I could wait and see, but I have to ask .... what is next? I'm understanding that many of us don't react the same, but in general, do we gain a little strength each day till the next Chemo (unless we get sick or catch an infection)?

Thanks,

Ray

behavior therapy

communityreply@lls.org — Thu, 03 Sep 2009 00:02:33 GMT

I finally found a therapist for Eli (age 5, dx ALL on 9/11/07). Have any of you gone this far? Was it helpful? Strangely, it makes me feel like a failure.

Maintenance is easier my a**.....

communityreply@lls.org — Tue, 10 Nov 2009 22:30:31 GMT

You go through this intense treatment with the idea that once you make it to maintenance everything will settle down. Well, not so much!!! Since Jakob started maintenance mid-Sept, he has had nothing but hiccups. First he was severly anemic and needed a transfusion, then this does he or doesn't he have AVN, counts bouncing around like crazy and today they think he either has H1N1 or pneumonia!!!! As an adult I can understand that this cancer thing isn't a black and white road but he is 12 and going nuts. People keep telling him how easy/better maintenance is and he has had it. I think today I'm done too.

Sorry I know you guys are the only ones that can truly understand. Thanks for listening.

Nana

Send me your dry eye remedies, any and all...

communityreply@lls.org — Sun, 12 Jul 2009 11:22:44 GMT

Thanks Tex for the suggestsions you have already given me. Tried the Refresh, couldn't find Refresh Plus. Is Tobradex gel an OTC product?

I am three years plus since stem cell transplant for AML and have had chronic GVHD of various kinds, but NOTHING has been as bad as this dry eye. It started about a month ago, I've been to eye doc and my Oncologist. I'm on 20 mg. prednisone for a week and it seems to be getting worse. I'm not too impressed with my eye doc, but not everyone knows alot about GVHD, his only course of action is 1% liquid prednisone drops, which do not work. That's why these discussion boards are great, people have actual and practical experiences and suggestions that work.

This is just an aside, so you know how bad it is, I just started a new part time job on the weekends, after five years since diagnosis, answering the phone. Yesterday I called 911 by mistake. I thought I was calling information.

They sent a policeman to where I work to check up on me. I told him to look at my eyeball, it's a miracle I can even see the phone! Then I apologized. No more out going calls for me.

So I need help. Thank you very much.

BTW, my Oncologist says five years, most GVHD "burns out." But both my Derm and Eye Doc say that is not true, the symptoms of GVHD stay with you the rest of your life. What say you?

Thanks again.

long term survivorship issues

communityreply@lls.org — Wed, 01 Jul 2009 18:01:17 GMT

I am a 60 year old female who is 1.5 years in remission. That is the good news. I am very grateful to all the doctors who put my stage 4 non hodgkins lymphoma in remission and appreciate every day. BUT.......I have been frustrated by the fact that my oncologist, my general practioner and another doctor failed to recognize an important side effect of my cancer treatment. I have adrenal fatigue and thyroid issues brought about by the stress of chemotherapy. It is not life threatening but it can be very debilitating. My adrenals have not totally failed (Addison disease) so the low cortisol did not show up on a blood test, but I had all the symptoms of adrenal fatigue and could not get myself out of bed. (I think my adrenals were on the weak side before chemo so it did not take much to put them in crisis). I also had a saliva test that confirmed low cortisol. For the last year I have had to change my entire life and have pretty much stayed home. Since the blood test was normal I was told I did not have a problem and that I should take an anti depressant or anti anxiety drug. I refused both. I finally found an alternative doctor who put me on hydrocortisone and now I feel like I have my life back. I can finally function. To this day my oncologist is not willing to admit that the chemotherapy was in any way related to my adrenal fatigue, or that I really have adrenal fatigue. (For those of you who have adrenal and thyroid issues, you know how debilitating the symptoms can be). I just do not understand his resistance. It is very obvious to me. So if any of you are finding yourself with chronic fatigue, unable to handle stress, w/ low blood pressure, sleep problems, anxiety etc you might want to get your adrenals checked through a saliva test. There are lots of neat web sites on adrenal and thyroid issues you can check out to become informed. The blood test is generally not accurate for adrenal fatigue since it only measures one point in time. Now I am not only a survivor but a person that can function and enjoy life.....Mary Ann

Counts O/T?

communityreply@lls.org — Fri, 26 Jun 2009 20:24:53 GMT

Hello! Our son is now one month and a half O/T and just went for his monthly labs. All looks good, everything in normal range (ANC still in low end of normal). I was just wondering how your child's counts looked for the first few months O/T - specifically, did they "jump" right up? Did they take some time? If you can share the pattern, I'd really appreciate it! Thanks!