The Leukemia & Lymphoma Society Community : Popular Threads - Coping with Treatment

Back looking into the Abyss

communityreply@lls.org — Fri, 29 May 2009 01:34:02 GMT

About 4 weeks back my mump reappeared. Just in time for my follow on check up after finishing RCVP. The Onc decided it was nothing much to worry over so I was put on WW and my next appointment made for 2 months time rather than the usual 3 months. In the 2 weeks since I last saw him the lump has grown from a pea size to golfball size. I phoned him up on Wednesday morning as I was a little bit concerned about this. He said get down there asap so I was there in under a hour being examined by him. The full prodding and poking exam. He could not find anything internally, thankfully. However, he has decided my lymphoma may have transformed so I will have another ct scan and a new biopsy.................Tony

How do you cope with hair loss?

communityreply@lls.org — Mon, 13 Apr 2009 15:03:53 GMT

Hi Everyone,

My name is Susan and I have AML. I am having a really hard time with hair loss. I have gone back and forth with do I shave what little hair I left ? The hair loss has been emotional for me and I feel like I am loosing part of myself. ( Even though the change is physical it just seems like it is so much more.) Mom and I went to cancer services I tried to pick out a wig but just couldn't bring myselft to do it. I was a teary eyed mess while looking at wigs. I lost most of my hair and was pretty bald when I was in the hospital in January. Now it is starting to come back but still not pretty looking. I have been wearing banadanas and I am getting use them. However, sometimes I don't like wearing bandanas b/c they are not as formal. How do you all overcome the emotional idea of wearing a wig? I am told that with my next phase of chemo that my hair will fall out again. Any suggestions on how to get past the p emotional aspects of wearing a wig and how different they make you look? ( What I mean here is how do you get use to your new look and say goodbye to your old one.) Has anyone else experieced these feelings? What did you do to cope? I am open to any suggestions. Thanks

Change with hair texture

communityreply@lls.org — Wed, 24 Jun 2009 13:15:16 GMT

Has anyone had a change with their hair since taking Gleevec? Mine is becoming curly

Anyone have problems with fingernails while getting chemo treatments?

communityreply@lls.org — Wed, 15 Apr 2009 23:07:48 GMT

I was wondering if anyone had problems with their nails. My are very brittle and are splitting ( breaking). I talked to the nurse today while I was getting my chemo treatment and she said that they can split and will become brittle. My nails are splitting across and down really low. (Almost in the middle of my nail if that makes sense.) Has anyone else experienced this? I don't want to risk infection bu cutting them or pulling off my nail. ( It would also be painful. ) Is there anything you can do to keep them from splitting? Any suggestions or insight would be appreciated.

Results from Bone Marrow do not show remission

communityreply@lls.org — Tue, 06 Oct 2009 22:45:26 GMT

Hi again,

We finally got my daughter's Bone Marrow biopsy results. They do not show remission, she still has 15% blasts the doctor said that they need to be at 5% to be in remission, she did come down from 100% blasts. So now she is going back into the hospital for another 8 rounds of chemo to get her into remission before the transplant. I thought that she needed to be in complete remission at this point in order for the transplant to be a success - that transplants don't work well enough if the patient is not in remission at this stage? Her doctor says that she is still optimistic that everything will be ok and that this isn't a major setback....is she being truthful? has anyone else experienced this?

Debra

Need help to understand bone marrow biopsy report

communityreply@lls.org — Sat, 17 Oct 2009 03:44:31 GMT

Just left onc. today, this was 4th BMB onc. seemed pleased as no acute leukemia seen, #4 done b/c plts have been very low since middle of August in 20's - 30's, finally up to 127,000, but also noticed he was talking of transplant since over -due 6 weeks for consolidation, have ALL and afraid leukemia cells could break through, got copy of pathology report and didn't notice till left that last page shows "hematopathology specimen information" that states Diagnosis of Multiple Myeloma with samples submitted and flow cytometry states myeloma/plasma cell disorders, Dr never mentioned this and of course unable to call this weekend as not in till Monday to ask, to be admitted next week for chemo, but this scares me to death, could that have been b/c the platlets were only 19 when the biopsy was done or is it really cancer of plasma cells??, had thought before maybe ITP and would give prednisone, but know is not that, has anyone got any ideas of this???, last time dx said ALL in Sept with plts low, thanks for any advice

blood counts not recovering

communityreply@lls.org — Mon, 28 Sep 2009 21:03:30 GMT

My husband has finished #4 consolidation for B cell ALL, his BMB x 2 have showed remission, but blood counts are not recovering, cont to require blood and platelets often, counts will come up for day or two then back down again, on 9/25 hgb-9.2, hct 26.7, plt 4, rec'd 4 units of blood and 1 unit platlets on 9/21 and i unit of platlets on 9/25 when platlets were down to 4, today 9/28 plts up to 7, and hgb back down to 7.8 and Hct down to 21.7, wbc was 0.2 on 9/25, today is 0.7, onc. still say remission,,but I thought blood counts should recover, has anyone else had this problem needing blood and platlets all the time, still has 4 more consolidations to go, thanks for any help, this whole thing is a bad nightmare I know for everyone in this situation, I just need help to understand this, thanks, Annie

a kind of embarrassing question, relating to ladies.

communityreply@lls.org — Thu, 24 Sep 2009 23:42:52 GMT

am i the only one having this issue?

my menstrual cycle has been crazy.

im usually on my period for 5 days.

last month i was on it for 2 weeks.

this month i've been on it for almost 3 weeks.

they put me on birth control back in July.

is this a side effect of chemo or some medication i'm taking?

Anyone else have trouble with insomnia?

communityreply@lls.org — Mon, 11 May 2009 14:08:00 GMT

I was just wondeirng if anyone else had problems with insomnia while getting chemo treatments. I go nuts b/c I am so wired and awake at night. It is like my body is tired but I just can't sleep. I have tried sleeping aids ( Ambien, Tylenol PM) and the Ambien kept me awake at night after taking it for a week in the hospital. I have also tried Tylenol PM and that helped to begin with but not anymore. I just don't sleep sound. Throughout this entire experience I have not slept well. Help please! It has only been four months! I mentioned this to my doc and he said that he does not want me taking sleep aids every night. As my mom said he wants to sleep but does not want me to sleep! Any suggestions would be welcome.

Questions?Remission induction

communityreply@lls.org — Fri, 09 Oct 2009 00:39:31 GMT

They have my Boyfriend on anti fungals and antibiotics before his chemo/Why? He has no infections and is that just protocol?can people die during remission induction?That is what I am afraid of.He is in pain now and becoming depressed.I have been trying to give hom a positive outlook but he has to want it for his self.I am also struggling with the guilty aspect of it because I am healthy and he is not, sometimes I just want to trade places with him to spare him all the pain and fear he is going through.

Help - Need Insight

communityreply@lls.org — Fri, 08 May 2009 12:59:01 GMT

My grandfather has been battling Leukemia for several years now. He was very sick last year with pneumonia, and that is when we discovered it was worse than we thought. Once he was able to recover from the infection, he started chemo therapy.

A few weeks ago, he was having abdominal pain and we learned that he had a gallstone. He underwent surgery and it was removed. He appeared to recover fine from the surgery immediately after.

However, a few days after the surgery, everything started to change and he is now in a state of constant confusion and fatigue. He cannot remember his address or common details of his life. He still seems to recognize people okay, though it does take him a minute to place them, as though he is really thinking about it. Also, he is now having difficulty walking. He has fallen a couple times and injured himself, which has led him back to the hospital.

It is almost like a dementia or even Alzheimer's, but it just came on so rapidly and has been going on for about a month now. It also seems to be getting worse, not better.

My grandmother is not getting any answers from the doctors and our entire family is wondering what in the world is going on here.

Is this a final stage of leukemia? Or is this perhaps related to the surgery he underwent to have the gallstone removed? I feel so ignorant about everything pertaining to this disease, so any insight this community could offer would be greatly appreciated.

We're all just wondering if this is the end... If we need to prepare ourselves. Or is this something entirely unrelated?

gvhd my eyes

communityreply@lls.org — Sun, 28 Jun 2009 17:03:13 GMT

Has anyone had problems with GVHD in their eyes? I have a burning sensation in my eyes where they dry up & produce some discharge. MUDD 05/08, relapsed myeloma 04/09. I saw the MD last monday & they gave me tobradex drops but have not been helping. any suggestions out there?

Trouble eating, weight loss?

communityreply@lls.org — Tue, 21 Jul 2009 23:08:01 GMT

Hi,

My 79 yr old dad was recently diagnosed with an aggressive T-cell lymphoma which has left him very week. Last week he finished his 1st cycle of chemo. He wasn't eating much before the chemo and he is still having trouble eating now. He has already lost 17 lbs. over the past 3-4 weeks. 6 weeks ago he was a relatively active man, now he needs a walker and help to move around the house. The doctor says he must eat and get enough nourishment. But my dad says food doesn't taste right and he is not able to force himself to eat very much.

I saw one post who said they smoked pot, and that cured their nausea and allowed him to eat. I don't know if my dad would go for that, but are there other remedies, suggestions out there that can help with eating? Are there pot like pills the doctor can prescribe that does the same affect as smoking?

Any help is greatly appreciated,

Earl

A mothers love

twana@gt.rr.com — Mon, 24 Aug 2009 00:25:27 GMT

My daughter has lympoma she starts chemo tommrow is there anything i can do to make it easier for her she is in stage 2b

Neuropathy/Cramping following CHOP?

communityreply@lls.org — Wed, 22 Apr 2009 20:05:47 GMT

I have had quite a lot of cramping and neuopathy following my treatment of six months of chemo-CHOP with Rituxin. I also had contracted a blood clot in my leg and on that part am not sure if it was chemo related directly or because I bumped my leg. Has nayone else had cramping? Mine is subsided now a lot from what it was but still persists in milder form in toes, fingers, parts of my feet, etc.

Is anyone with CMML bothered by a skin rash?

communityreply@lls.org — Fri, 31 Jul 2009 05:43:16 GMT

One of the symptoms of my CMML was a severe skin rash on my chest and neck. There's a little on my face. I am also troubled by an unbelievably itchy scalp. All I do is scratch. Last school year the teacher next to me had the school nurse come to my room and check us all for head lice. It was controlled with high doses of prednisone for several months. I've been tapering down with it. Now that I'm down to 9 mg daily the rash is back with a vengeance. I'm also on Gleevec to treat eosinophilia, but I don't carry the philly gene... My doctor hasn't suggested any other treatment yet for the CMML. I'm looking for any suggestions.

Thanks.

Chemo affecting teeth

communityreply@lls.org — Thu, 08 Oct 2009 16:09:42 GMT

So Madelyn has been on treatment a little over a year. She is almost 6 and 3 of her molars just came in. I took her to the dentist and she has a cavity in all 3 of them. The dentist says the chemo weakens the enamel and aside from having her drink water with fluoride in it there isn't much we can do. I am just really bummed about this and was wondering if anybody else has an similar experencies or advice about anything else we can do to try to strengthen the teeth. Thanks.

Mary

Hair Loss 18 months after chemo

lovetheride@sbcglobal.net — Thu, 13 Aug 2009 20:48:30 GMT

Hello everyone! I have a question for you all. My Husband was DX with NHL in July, 2007. He went thru RCHOP, lost his hair, finished that in Dec, 2007, and just finished his 3rd round of maintenance Rituxin. For the last 2-3 months his hair has been falling out. All over is body not just his head. Has anyone else experienced this? He will see his ONC in Dec. Curious to know what you think??????? THANKS! Susan

here i go again

bitsofmyself@verizon.net — Wed, 17 Jun 2009 18:10:35 GMT

our daughter, whom i call “nugget,” was conceived via ivf after a long, painful struggle with infertility. now i’m a full-fledged attachment parenting, extended nursing, child-led weaning*, co-sleeping, green living, suburban dwelling, still infertile, stay-at-home mother of one.

*in may of 2008, i was diagnosed with hodgkin’s lymphoma. we stopped nursing for chemotherapy (abvd). this is clearly not what i had in mind when i chose to practice child-led weaning. i pumped through chemo and we were able to resume nursing after treatment. now i try to remember our nursing hiatus as just a bump in the road. a really, really huge, scary, awful bump that no one should ever have to endure.

sadly, my june 2009 scan shows the cancer is back. we have worked so hard to get to this point and now the rug’s being pulled out from under us once again. cancer sucks.

i had a PET scan monday afternoon. this evening i got the results from my uncle, since he’s the chief of radiology at the hospital i go to now in richmond. the initial report concludes that the disease is back.

ct scan tomorrow. biopsy friday. assuming this is the real deal, i’ll do a second-line chemo, (likely ICE) to put me in remission and then do a stem cell transplant

i asked nugget if she remembered having to stop nursing before. i sobbed and tried my best to reassure her that we will try so very hard to make it back to where we are now.

this is beyond horrifying. i can’t believe we have to go through this again. i can’t believe i have to force my baby girl to stop nursing again. the chemo, that’s nothing.

f*@% you, cancer. f*@% you very, very much.

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