[Karen]

Transplant decision

by Karen on Wed Feb 09, 2011 7:12 pm

I met with the transplant doctor today to discuss the stem cell harvesting, which will take place at the end of this month/beginning of March, depending on how fast they can get insurance approval and get everything set up. That part is all fine; I know this is something I have to do ASAP since I am taking Revlimid and I know it interferes with the ability to harvest the stem cells.

I'm still really confused about the whole decision of when to have the (autologous) transplant, though. My impression from this doctor is that he would advise having the transplant soon, possibly as soon as after my fourth cycle of the Revlimid/Velcade/dex trial I'm in now (I'm in the middle of Cycle 2.) But of course he is a transplant doctor so I think he would naturally lean towards that. My hematology oncologist had initially said he thought we would harvest the cells and then wait, possibly 2-8 years, depending on how I'm doing on the drug therapy. Right now it's even too soon to see if I'm responding to it. I know if I'm not responding well, the decision about the transplant would be easier.

The transplant doctor was very frank in saying that there is no black-and-white answer. He said the decision about when/if to do transplant is "very controversial" right now and there is no one right answer. I understand this but I think I need more information as to how it would benefit me based on my current situation. The level of myeloma right now is fairly low--my bone marrow biopsy showed 15%. I haven't gotten a lot of specific myeloma marker numbers back yet but I gather that my M-spike numbers were quite low but my free light chain numbers were on the high side. Not sure how relevant that is...The thing is that the transplant doctor said that the goal is for me to feel as healthy as possible for as long as possible. The problem I have is that i feel healthy right now (other than the minor side effects from the drugs.) He mentioned some studies that had been done showing that for people who had transplants early in treatment, vs. people who had them later or not at all (just having drug therapy), the survival rates were longer for the transplanted patients. BUT these studies were done on people who were not getting the new drug agents. So I'm not sure how relevant they would be.

Part of me just says "Oh, get it done now and get it over with." But I'm not sure that's the best way to make a decision. What I really want, of course, is for someone to tell me that I'll live x number of years longer if I have a transplant, and I know nobody can tell me that. So how do I come to a decision? It's hard. I'm only 51. I can see now why getting diagnosed at a "young" age is a mixed blessing. On the one hand I am otherwise healthy and strong, better set up for aggressive treatment. On the other hand, had I been diagnosed at the more typical age of say, 70, I might feel "Well, my kids are grown, I've had a fairly long and happy life already."

Sorry to go on, I just hate uncertainty and indecision and this is really hard for me.

Thanks for any further advice!

Karen

[hp1610]

Re: Transplant decision

by hp1610 on Thu Feb 10, 2011 3:42 am

Hi Keren,
I understand your dilemma.
I'm 49 y.o. and decided few months ago to wait with the transplant (my stem cells were collected three years ago when I was first diagnosed). It wasn’t an easy decision and as you wrote, there is no clear-cut opinions between the doctors. Though the difficulty of the decision, I was glad that it was in my hands.
Finally, after all the readings and consulting with the specialists, I felt that the decision is a personal, internal one and since (the same as you), I'm feeling 99% healthy and I'm running normal life style, I've decided to wait with the transplant and to continue with novel drugs (I'm now on VTD with nCR). Was it the right decision? No one can tell. But personally I feel that in my situation, time plays an important part in the strategy so delaying the transplant if possible make sense.
Feel well,
HP

[Karen]

Re: Transplant decision

by Karen on Thu Feb 10, 2011 1:01 pm

Thanks for your reply, HP. I'm glad you're feeling so well!
In thinking about this a bit more over the past day or so I did come to the realization that the decision is really in my hands; obviously no one is going to do a stem cell transplant on me without my OK. And unless my doctors can tell me something to indicate that one is warranted ASAP, I think I need to remember to take into account not only the impact of having such a procedure on myself, but on my family. Although I am quite sure I would emerge from it fine, we all know that the preparation, the high dose chemo, and the recovery is not a picnic. So I need to be in a good place emotionally to deal with that and I need to make sure my family is as well.

Right now we're still processing the simple fact that I have multiple myeloma; it's only been two months since my diagnosis. Test results are still coming in. My younger son is in his junior year of high school and having a stressful year (between what's happened with me and his own school stuff, college planning, etc. My husband is also still working on dealing with our new reality while trying to balance his work life. So I think we all need a bit more time to get through at least the spring and summer before I think about the transplant. I could see myself being more ready for it, say, in the fall, which will also be when my clinical trial is winding up (assuming that I do well in the trial and respond to the meds.) I had some short trips I was hoping to take over the summer on my "off" weeks from chemo and I think those would really boost my mood and my ability to deal with a transplant. Plus, my older son's in college and will be home starting in May; I'd really like to have that spring/summer time to be with him and not have the whole time taken up with recovery.

So that's what I'm thinking right now; that based on what I know so far, there's no reason to rush into having the transplant very very soon, but if my doctors think one is warranted later this year or next, I'll be in a better place then to handle it.

At least that's my thinking today!

Karen

[NStewart]

Re: Transplant decision

by NStewart on Wed Feb 16, 2011 7:38 pm

Karen-
It sounds like you are thinking more clearly about what and when you might do a transplant. Since it isn't an emergency right now you have time to decide when it would be the best time to do it. I put mine off for a few months because the time that the doctor wanted to do it would have put me in the hospital over Thanksgiving and recovering over the Christmas holidays. That wasn't what I wanted.

So, if you decide to have a transplant plan it for a time that is the most convenient for you and your family. Enjoy the summer with your sons and take those trips. You'll know when it is the right time for you.

Nancy