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

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.

Two Months Remission and Scared

communityreply@lls.org — Fri, 20 Nov 2009 02:11:51 GMT

Hello Everyone,

How I wish I had found this website 8 months ago when I was first diagnosed with Hodgkin Lymphoma stage IV. I've completed my treatment and is two months into remission. I am finally dealing with the diagnosis, and what I've been through. I feel like I'm just coming out of a fog and I not sure how to deal with it all. My husband and family are very religion and feel that praises to God for my remission is all that is needed, but somehow that is not helping me deal with the anxiety and uncertainty I'm feeling. Therefore, I was so appreciative when I found this site and others like me living with this disease. From reading some of the post, so many of the questions I've had over the last 8 months appear to be so common for everyone on this site. It does me heart good to connect with others that understand first hand what I've been through and continue to deal with.

I endured 6 cycles of ABVD and was initially scheduled for 6 weeks of radiation. At the completion of my chemo the decision was made that radiation was not needed because the chemo had put me into remission, has anyone had to make this decision? My radiologist told me that the damage that would be done to my lungs outweighed the benefits I would received from the radiation because at this point it was being done simply as preventive maintenance. We made the decision not to do radiation, but I'm not sure if I've placed myself in jeopardy by not doing chemo and radiation.

I'm doing well now, feeling more normal each day and greatful for the support of my family and friends, but I feel so anxious and not sure how to deal with it all.

My Husband has Myelofibrosis with Myeloid Metaplasia - Questions

communityreply@lls.org — Thu, 19 Nov 2009 10:18:59 GMT

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.

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

Purpuric dermatosis and swollen lymph nodes

communityreply@lls.org — Sat, 14 Nov 2009 19:22:21 GMT

Hello. I was wondering if anyone can offer me some insight as to whether or not I should be worried/upset about this.

Since June I've had 3 swollen, peristent but not growing, lymph nodes in my neck. I had a FNA which got messed up (long story). I've been to every type of specialist (ENT, endocrinologist, hemotologist). Since the summer I've been getting (but not sure if I had this previously since I wasn't looking for petechiae previously) red spots on my upper arms and trunk. They come and go, come and go. They were never present for the hemotologist or my primary to see. When I found some I immediately went to my dermatologist who did a biopsy. He was certain that I was wrong and that's why he did the biopsy. He even got out his medical school book to show me that I was wrong and bet me $5 that I was wrong. Well, the results came back and I am right. They were diagnosed as purpuric dermatosis. He wasn't sure which one but told me to go online and read about it. Taking into account my lymphoma workup because of the swollen lymph nodes I freaked out when I saw that this can be associated with T-cell cutaneous lymphoma. I have to see my primary on Monday so he can get a more complete workup done on me. The ENT on call at my ENT office said that I need an excisional lymph node biopsy but not to worry because the two may not be connected but they can be connected. I'm PO'd that the hemotologist basically kicked me out of his office because my lymph nodes while swollen aren't swollen "that much" and my bloodwork is normal and the spot weren't present the second time I went to see him about the spots. He said this is a dermatology problem.

My concern is that there is a link between this purpuric dermatosis and lymphoma. Considering my swollen lymph nodes (a new one found last night and no illness is present) I'm very worried about lymphoma.

Does anyone have any insight?

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

when will the itching stop?

communityreply@lls.org — Fri, 13 Nov 2009 03:07:15 GMT

I have been diagnosed with Hodgkin Lymphoma Stage 2B - and i'm learning all the time about how to cope.

My major concern right now is the incessant itching that can present as a symptom of the cancer.

It's been explained to me by my oncologist why it happens - and I understand that there are no cures (apart from the cancer being kicked itself) I was wondereing if anyone has any good coping techniques to share?

It seems to be worse at night, and I have no rash - just blood wounds where I scratch myself so intensely - I had hoped that it would stop when the chemo started?

I have had one session of ABVD, but not completed a cycle yet, has anyone else a perspective on timelines?

The nurse told me it would stop right away - maybe she meant after a full cycle?

I figure it has to stop soon - but when?!

Kava root as therapy for CML treatment side effects

communityreply@lls.org — Wed, 11 Nov 2009 14:00:54 GMT

Hi. I was wondering if anyone has tried Kava root to counteract side effects from CML treatment. My biggest problems are severe fatigue, anxiety, depression, and insomnia. My oncologist said I'm not supposed to take it with Tasigna, due to the alleged liver toxicity problems, but from everything I've read, the pure Kava root does not cause this issue at all.

Any comments?

Seeking info advice on inpatient D-PACE

grbss@msn.com — Tue, 10 Nov 2009 16:01:51 GMT

My husband, 53, was diagnosed in August with stage 1 MM. In September he was started on outpatient RVD (revlimid, dexamethasone and velcade). After three cycles of treatment there was very little change in his count. They have d/c'd it and are moving on to inpatient D-PACE - a much more intensive chemotherapy. He will receive four days of chemo and be in the hopsital for 2 1/2 weeks, at the end of which they will hope to harvest stem cells in preparation for a stem cell transplant 3 or 4 weeks later. I have had a hard time finding information on what to expect while he undergoes this treatment: how sick will he be, what will he need from me, his caregiver. And don't know what to expect when he comes out of the hospital. He is trying to figure out how much he will be able to focus on his laptop and work, and I am trying to figure out what he will need from me so I can plan my work and our family life. Any experience, knowledge, information, advise on this would be appreciated.

Thanks,

Susan