Content in The Leukemia & Lymphoma Society Community

Relapse 11 months post transplant

communityreply@lls.org — Tue, 21 May 2013 17:17:04 GMT

Hi all

Never thought I'd have to write this post, everything was going so well, but found out today Matt has relapsed :'(

Am beyond devastated.

Please give me some hope regarding survival following relapse post transplant, the doctor wasn't exactly positive!!

Plan is he's going back in on Friday for 3 days of FLAG chemo and then a 'top up' of his brothers T cells in the hope we can get the GVHD going again.

I've cried so many tears today there aren't many left

Chip x

67 year old father REALLY struggling with whether to do SCT

communityreply@lls.org — Tue, 21 May 2013 17:11:53 GMT

Hi, all -

Didn't want to hijack rockdoc's thread, so I thought it better to start my own here. I'll begin by saying that a few weeks of lurking on these boards have left me so impressed by the warmth and concern of so many in this community. It amazes me that there are so many of you willing to share your experience with those of us who are just beginning this ordeal, and still feeling a little shell-shocked!

Our family is meeting with the oncologist tomorrow and we are unsure as to what we should be asking her about next steps, transplant, etc. My Dad is 67, in good shape otherwise, i.e, no issues with heart, blood pressure, or problems like diabetes, etc. and is now 4 weeks out from completion of consolidation. He is in full remission and has been informed that he has a donor (an unrelated 21 year old male). The recent fly in the ointment (and I'm sad to say, it's a BIG one!) is that he has just been informed that in addition to the AML, he has a stage I renal carcinoma (2 centimeters). So, where up until a couple of days ago he was thinking that the SCT might be the thing to do given that he had no co-morbidities other than his advanced age, with this kidney thing now an "issue," his doubts have resurfaced in a big way! The recent news has left him feeling a little more fatalistic, and like it just might be his "luck" that he would resolve the thing with the kidney, proceed with the SCT, suffer horribly with GvHD, blow through tens of thousands of dollars on immunosuppressants and whatnot, only to relapse in the end anyway. His AML oncologist, incidentally, has not changed her position as to what is the appropriate treatment for him (SCT) , even in light of the kidney thing.

When my Dad is feeling unwell or discouraged, he seems drawn to the idea of forgoing a transplant, and focusing instead on enjoying what time remains. When he is feeling stronger, and well - he is more receptive to the idea of the transplant, and eager to understand the details around what follows, risks, etc. It also seems that he sometimes wonders if the team at Dana Farber / Boston is "pushing" him to consider a transplant for reasons having little to do with his health. He finds it problematic that his doctor suggests that the likelihood that he will relapse is as high as 95%, when the statistics he has seen don't show numbers nearly that high. The discrepancy between these figures has left him wondering whether she his recommending the transplant because there is institutional pressure on her to move this "product." While I appreciate his effort to research this question as carefully as he is, I have this sense that he is really approaching the "statistics" in a way that is not that helpful or relevant for the particulars of HIS situation as an individual.

We did have one brief session (some weeks ago) with the doctor that would handle the transplant, and gathered from his remarks that while transplant brings with it an array of serious risks, that to elect NOT to do it (in my dad's case!) offers a pretty poor prognosis. My brother, mother, and I left the meeting thinking that there really wasn't much to be made in the way of a decision here, as the one approach offered at least the hope of recovery while the other was almost certainly to result in a relapse (perhaps sooner, rather than later).

So, if you are willing to share, what kinds of things did you ask about? Are there aspects of the transplant process that you wish you'd understood better before you made the choice to go that route? If you were ambivalent about doing it, was there an insight or an experience that helped you to feel more certain about your choice, one way or the other?

We don't know what we don't know, of course, and would be grateful if others of you with some experience of this process would be willing to share with us some suggestions for what we should be asking of the doctors at this point in the game.

Thank you.

Robin

The big six

communityreply@lls.org — Tue, 21 May 2013 01:09:47 GMT

Today marks 6 years since my transplant! I celebrated by cutting the grass and sweating like a pig. I love working in the yard and that's one of those things that reminds me how fortunate I am to have had these years. Of course it would be more of a celebration if it hadn't been for my trip down memory lane in 2011. As my doc says, I never do things the easy way. My reply to him is "I want to make sure that you earn your money".

Next Tuesday Pam and I will be celebrating 30 years of marriage. We'll be celebrating with a trip to the Dominican Republic in June. It's great to be able to have those milestones.

I appreciate the support that I've received from all of you during by journey and re-journey.

Thanks all!

Kelly

AML M4 with InvC16 - 66 year old dad relapsed after a year in remission - BMT??

communityreply@lls.org — Sat, 18 May 2013 17:54:54 GMT

Hello -

It's been a while since I've been on this forum. Dad was diagnosed last November 2011 and started treatment in the Dallas Baylor hospital immediately. They gave him the standard treatment for a 50ish year old since he was in such good shape. He had no initial symptoms and just found out of his condition through doing the Cooper Clinic overall checkup. At the time they found something he didn't even have AML, just concerning/changing blood counts. Anyway, he had the treatment and after the initial induction he was cancer free. He did amazing through the chemo treatments, never had any major issues or infections and kept a positive attitude the whole time. Even closed a few deals for work while in the hospital (yep, that's just how my dad is! he kept on working). That was January 2012. Then they did 3 rounds of consolidation and since March 2012 he's been living his life to the fullest as much as he can.

1. So does that make him 'in remission' as of January 2012?

I believe this is important in calculating his months in remission number, right? His last chemo treatment ended in March12, but again, he didnt show cancer cells past January.

He just went to the doctor for his regular monthly blood tests last Friday, 1/25/13 and they said his AML has come back. He has had no symptoms, just like the first time. He's going in for chemo on Wednesday and from what I understand will get a week of chemo, then 2 weeks of recovery. Then he gets to go home for a week or so and will go back in for a BMT if we can find a donor. Now this is where I have lots of questions...

2. Finding donors - he has a brother and sister but his sister has had hepatitis so I dont think she'll be able to donate regardless. He also has 3 children. The best chance is his brother, right? What are the chances any of his children will be a match? Generally good?

3. We have many friends, church members, etc. that are willing to test to be a match. It is my understanding that if we want them to test just for him so that it's done in a timely manner, that we need to go directly to the donor hospital and figure out how to get people tested just for him, right?

4. If none of those options present a viable donor, then we'd go to the public donor bank, yes? I've read that that can take 3-4 months to find a match. How's that possible? He will need it much sooner than that!

5. If all else fails, then we have cord blood, correct? I've read that this could work but has a higher possibility of GVHD.

6. Any reason why he should look into MD Anderson if he seems to have the standard AML M4 with InvC16? And he responded REALLY well to his initial treatment the first time? Is Baylor Dallas a good place for him to be for a BMT?

Since he falls into the good health category, does that still mean that with a perfect donor he only has a 50% chance?? I'm heartbroken about all of this because he feels GREAT and looks great it's just the results of these blood tests that is sending him to the hospital. AML is such a cruel disease.

I appreciate your insight to my questions!!! I'm trying to stay positive for my dad but am very concerned.

My favorite creatures

communityreply@lls.org — Sat, 18 May 2013 17:48:22 GMT

I figure there have to be some animal lovers out there among us LLS people. I have 7 dogs, a Russian Tortoise, and a fish named Killer, who has assassinated every living thing in the fish tank he used to live with. I have lots of photos, so be prepared to be dazzled by how cute they are, or bored to tears because some people do not enjoy critters. Please meet Gypsy, you will see her often, she is shy, as viewed here, but have lots of please take my photo shots for the future. Oh, I Boy Scout swear each photo is not posed, they just end up doing lots of fun things and I always have a camera close by.

Bad experiences with intrathecal chemo (Depocyt), anyone?

communityreply@lls.org — Fri, 17 May 2013 16:23:30 GMT

Hi,

My husband has been treated for CNS relapse of ALL with intrathecal methotrexate and just recently with Depocyt. Since the Depocyt injection, he's had terrible pain in his buttock and really bad headaches + some nausea. Today we were told that Depocyt could have caused these symptoms or there might be some infection on the spinal area. He's taking Dexamethasone 3 times a day now, and hopefully that will start working soon. Is there anyone on this board, who's experienced similar with Depocyt or intrathecal chemo in general? Have you had long-term pain after the IT-treatment?

-TeA-

Long term followup care in Seattle

communityreply@lls.org — Thu, 16 May 2013 21:56:20 GMT

Hey everyone, i am just wondering what the followup care is like in Seattle. I am moving there in June. I got my transplant at Dana Farbar/Brigham and Womans hospital in October last year. I have had a few problems but am doing okay right now. My doctor is setting me ip in Seattle but he says their system is different than here. Right now I go down to clinic in Boston about every other week. I get my labs drawn, then go see my doc or his PA, than go to infusion if I need anything. I am just looking for insight into how things go in Seattle. Thanks in advance.

Rach

Do I need a 3rd transplant?

communityreply@lls.org — Thu, 16 May 2013 21:42:57 GMT

Hello folks,

I wrote on here about 5 months ago when I was about to do a 2nd transplant. I had received my first transplant from my brother 5 years ago for AML when I was 28. I relapsed after 4.5 years with the same disease. I went into remission with 1 round of chemo and was found to have 100% brother cells. I then received a mini-transplant this past December with the goal of switching to my sister's immune system (amazingly both my brother & sister were perfect matches). Things didn't quite go as planned after that. Instead of engrafting with my sister's cells, my brother's cells have refused to disappear and have been beating up my sister's cells despite me receiving a large second boost of her cells & then a strong DLI from her. The DLI was about 5 weeks ago, and I'm now experiencing marrow aplasia and need RBC and platelet transfusions every few days. The cells remaining in my bone marrow continue to be a mixture of my brother's and sister's. Thank God, there has been no evidence of cancer. The doctor did a biopsy today to check again, so I'll find out those results next week. The crazy thing is that I feel perfectly normal despite my super low counts (ANC=0.0!). I've never experienced GVH, fatigue, etc.

I'm scheduled to start receiving chemo for a potentially myeloblative transplant (the doctor said he'd consider reducing the toxicity somewhat if latest biopsy continues to show no evidence of cancer) next Friday to get back to my brother's immune system. I've been in remission since October, so I'm not excited about doing more chemo/radiation if I don't need to. I wonder if I should just get a boost of brother's or sister's stem cells (without any chemo/radiation) since my bone marrow is pretty much empty already. I also wonder if it would be better to keep trying for sister's immune system if myeloblation makes it just as easy to get to hers as to brothers. Any suggestions?

Best,

Sarah

Tonsils

communityreply@lls.org — Sun, 12 May 2013 14:48:34 GMT

Hello my friends,

As some of you know, my husband Adam is almost three and a half years after transplantation for CML . Generally speeking he is doing great. He works full time, feels good , his last medical report ( from 0ctober last year) was excellent: 100% donor, PCR negative, normal blood results, etc

But...

He had some ( maybe three or four) infection last year. After antibiotic treatment they gone away. But his tonsils are still very big with same scars. Few days ago his throat started hurt again, and his primary doctor suggested to contact a laryngologis. Meanwhile, Adam visited his hematologist. She also didin't like his tonsils and decided that they should be removed. Adam's hematologist wants to be sure, that there are no leukemia cells or any other cancer cells. He will have the surgery in three weeks.

I am very upset. I just started to don't think about leukemia each day.... To be honest I am panic. If any of you have tonsils removed? Every word of wisdom is to be expected...

Sorry for my English , it is not my first language.

Marta

"The One Hundred"

communityreply@lls.org — Thu, 09 May 2013 22:01:27 GMT

http://www.theonehundred.org/honorees/view/yi-bin-a-chen-md/

Above is a link to Nate's Doctor's honoree bio. He is being honored this year by Mass general as part of "The One Hundred." It's a huge fundraising gala in Boston honoring people who make a difference in the cancer community. Most of the honorees are philanthropists and various organizations, and some doctors are nurses. I nominated Dr. Chen and he won

Very proud of Dr. Chen and he deserves the recognition! Just wanted to share with everyone.