The Leukemia & Lymphoma Society Community : Thread List - All Communities

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

Dealing with AML (acute myeloid leukemia) as a teenager: What is it it like and how to cope?

kurt_mcnichol@hotmail.com — Sat, 21 Nov 2009 04:14:05 GMT

Ok so I'm kind of new to this and am not sure whether I am posting stuff in the right discussion board

but I was wondering if there are any other teenagers like me who have been diagnosed this year with

AML. I'm 19 years old and was diagnosed with AML on the 9th November 2009. Would be great to hear

from other teenagers who are going through the same phase! I'm so intrugued and interested about this

that I would like to hear other teenagers opinions and thoughts on AML! I feel that hearing or speaking to someone

else that is a teenager who has AML will help me better understand the position I am in because right now at

this time I'm so frustrated with this and I know other teenagers will understand where I'm coming from

Thanks a lot!

Kurt

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.

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

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

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.

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!

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

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?

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.

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