Hi everyone,
I know there are many conversations here about whether to have and early vs. delayed ASCT or not even have one at all. I've read through most of these and am still on the fence about what to do. From what I can tell, many people that have opted to wait are ISS 1 or maybe 2. My questions are:
Have you chosen to delay or opt out of a stem cell transplant with ISS stage 2 or higher (or a myeloma that has been considered aggressive)?
If so, how has that worked out for you?
I'm ISS stage 2 and Durie Salmon 3 (at least I think I don't have those mixed up). I have good kidneys but a ,lot of bone damage. My myeloma specialist at Dana Farber and my local oncologist are recommending early because they think the myeloma is aggressive but I don't have the cytogenetics because not enough marrow was extracted. Recently I asked for a new bone marrow biopsy but was told that probably not enough cancer is in the marrow now to get cytogenetics. I was hoping that would help me decide. My M-Spike was 6.83 on May 9th but now it's .98 after 3 cycles of RVD.
Really, I'd like to never have to do the stem cell transplant but I don't want to cut years off my life. I'd be okay with losing a few months if I could avoid the transplant, however.
Thanks for any input,
Joy
Forums
Re: ASCT
My doctor had me do the transplant 4 months after my diagnosis. I was stage 2 also and my latest bone marrow biopsy showed no cancer. I give myself a shot of Velcade once every two weeks as maintenance. I feel good and and am happy for my drs decision to aggressively attack my myeloma 
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: ASCT
Hi Joy, I 'm like you torn about AST when I was first diagnosed (Stage 2A) with anemia, some kidney and m-spike of 5 I was already to try it because I heard it prolonged your life. But then my oncologist told me it doesn't really work so that was a downer but then later he said to me you ready for the AST we'll send you to San Diego or City of Hope. So of course I took to the internet and blogs and come to find out some people yes did do well with just one AST but most others on the blogs and forums have had 1,2 even 3. Now I don't consider 62 really old but I don't think that my body would be up for more than one especially since just with the Velcade and Dex I had some problems and they told me when I started this treatment that most people do really well (no problems). Some do but many others have had problems even worst than mine. So in perspective I will put it off see how long I can go without the SCT until it's absolutely necessary. And that depends on how old I 'am when things really go south Like I said my numbers have really gone down and have stayed down for as long as 7 months. But my prognostic factor is t4:14 from the bone marrow biopsy which is not good but I read that Velcade and Dex is also good in lowered doses for relapse therapy so as long as it works that's good enough for me. My quality of life is what matters to me not the quantity and if I'm not feeling good can't walk without assistance and things get worse it's just not worth it to me. Now if I was 30, 40 even 50 years old I'd think I would try it sooner. But that's just my opinion. Take Care 
Like I said my numbers have really gone down and have stayed down for as long as 7 months. But my prognostic factor is t4:14 from the bone marrow biopsy which is not good but I read that Velcade and Dex is also good in lowered doses for relapse therapy so as long as it works that's good enough for me. My quality of life is what matters to me not the quantity and if I'm not feeling good can't walk without assistance and things get worse it's just not worth it to me. Now if I was 30, 40 even 50 years old I'd think I would try it sooner. But that's just my opinion. Take Care -
bdrake - Name: Bren
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 3/09/2012
- Age at diagnosis: 60
Re: ASCT
Hello from sunny Seattle, Joy,
This is an excellent question and one that patients and providers alike are puzzling over. There is a general consensus in the myeloma community that autologous stem cell transplantation (ASCT) does not have to be performed upfront (or 1st line) if a patient has achieved a CR from induction therapy. We do not know if a CR achieved from novel agents is the same as a CR from a ASCT and curent research studies will help to answer this question.
If you are a "standard risk patient" and do not have the TP53/del17 or t(4;14) abnormalities then many experts feel that it is reasonable to postpone an ASCT until the 1st relapse. The ASCT should be performed at 1st relapse though and not at a later date as we have no data to support delaying transplant after 1st relapse. This recommendation comes from a retrospective study performed at the Mayo Clinic that demonstrated that in transplantation-eligible patients who receive IMiDs as initial therapy followed by early stem cell mobilization, delayed SCT results in similar overall survival compared with early SCT.
Although it is still valuable, the ISS staging system has flaws, including the fact that it is based on patients treated before the novel agents were available and before cytogenetics were widely available.
For me whether or not to transplant "upfront" depends in large part on cytogenetics and whether or not the patient has achieved a CR. This is an area that is widely debated.
It is too bad that you do not have cytogentics available and I agree with your physicians that perhaps that makes the choice to transplant upfront optimal.
Thank you for sharing your question with the Beacon and its readers.
This is an excellent question and one that patients and providers alike are puzzling over. There is a general consensus in the myeloma community that autologous stem cell transplantation (ASCT) does not have to be performed upfront (or 1st line) if a patient has achieved a CR from induction therapy. We do not know if a CR achieved from novel agents is the same as a CR from a ASCT and curent research studies will help to answer this question.
If you are a "standard risk patient" and do not have the TP53/del17 or t(4;14) abnormalities then many experts feel that it is reasonable to postpone an ASCT until the 1st relapse. The ASCT should be performed at 1st relapse though and not at a later date as we have no data to support delaying transplant after 1st relapse. This recommendation comes from a retrospective study performed at the Mayo Clinic that demonstrated that in transplantation-eligible patients who receive IMiDs as initial therapy followed by early stem cell mobilization, delayed SCT results in similar overall survival compared with early SCT.
Although it is still valuable, the ISS staging system has flaws, including the fact that it is based on patients treated before the novel agents were available and before cytogenetics were widely available.
For me whether or not to transplant "upfront" depends in large part on cytogenetics and whether or not the patient has achieved a CR. This is an area that is widely debated.
It is too bad that you do not have cytogentics available and I agree with your physicians that perhaps that makes the choice to transplant upfront optimal.
Thank you for sharing your question with the Beacon and its readers.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: ASCT
Hi Dr. Libby!
Thanks for taking the time to respond to my question. That's interesting that the ISS staging system doesn't really take the newer drugs into account. Things are changing so fast.
I will most likely bite the bullet and go ahead with the early transplant. I appreciate your input and this forum that the Beacon provides.
Joy
Thanks for taking the time to respond to my question. That's interesting that the ISS staging system doesn't really take the newer drugs into account. Things are changing so fast.
I will most likely bite the bullet and go ahead with the early transplant. I appreciate your input and this forum that the Beacon provides.
Joy
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: ASCT
Joy-
Making the decision about whether to do a transplant early, or to wait until things get bad again is really hard. I chose to do it early because of my bone involvement. I already had had a pathologic fracture of my arm and the thought of more fractures because of the Myeloma was frightening to me. I felt that having the transplant and possibly getting the Myeloma into a better response was the right way to go for me.
I had the transplant after 8 rounds of Revlimid and Dex. It wasn't fun, but it wasn't as terrible as I had imagined it would be. I was back to work 10 weeks after the transplant as an outpatient physical therapist. Yes, I was fatigued for quite a while after the transplant, but it gradually got better.
I am so glad that I did the transplant because it kept my bones in better shape. I can tell when the multiple myeloma is beginning to rise it's ugly head again because my bone lesions begin to hurt. I'm still getting Zometa infusions every 6 weeks and I did have to restart Rev and Dex again in Dec '12. But, things quickly came under control again.
Whatever you decide to do, know that it is the best decision for you. You need to know your own body and how it responds to things to make the decision that is best for you.
Good luck with whatever you decide to do,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
Making the decision about whether to do a transplant early, or to wait until things get bad again is really hard. I chose to do it early because of my bone involvement. I already had had a pathologic fracture of my arm and the thought of more fractures because of the Myeloma was frightening to me. I felt that having the transplant and possibly getting the Myeloma into a better response was the right way to go for me.
I had the transplant after 8 rounds of Revlimid and Dex. It wasn't fun, but it wasn't as terrible as I had imagined it would be. I was back to work 10 weeks after the transplant as an outpatient physical therapist. Yes, I was fatigued for quite a while after the transplant, but it gradually got better.
I am so glad that I did the transplant because it kept my bones in better shape. I can tell when the multiple myeloma is beginning to rise it's ugly head again because my bone lesions begin to hurt. I'm still getting Zometa infusions every 6 weeks and I did have to restart Rev and Dex again in Dec '12. But, things quickly came under control again.
Whatever you decide to do, know that it is the best decision for you. You need to know your own body and how it responds to things to make the decision that is best for you.
Good luck with whatever you decide to do,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: ASCT
I was diagnosed as Stage 2 back in Feb 2009. I am a standard risk patient and my oncologist was not a big fan of ASCT. I had a CR after about 4 months of being on RVD plus Aredia. I am currently in remission and receive a Velcade shot and 8 mg of Dex every 2 weeks. So I have been in remission for over 4 years now. I work full time and never missed any work other than the days in which I had infusions which were usually no more than a 1/2 days. I am very acitive as a cyclist as you can read from my posts. Most people that get an ASCT end up on maintenance for long period of times. So I am doing the same thing but did not have to go through the loss of work and risk that an ASCT puts your body through. After all an ASCT completely destroys your bone marrow that has to be built back up.
If you have to be on maintenance anyway then I personally so no advantage in the ASCT but that is an individual call. If you are not standard risk, the ASCT may be the best option.
Ron
If you have to be on maintenance anyway then I personally so no advantage in the ASCT but that is an individual call. If you are not standard risk, the ASCT may be the best option.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: ASCT
Great post Ron! My husband is on the fence about going through a SCT, but is learning towards not doing it. He is age 70, and even though he has been determined to be in great health for one, he would rather stick to treatments. Your post is helpful and glad you continue to do well!
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Frank and Vickie
Re: ASCT
In case you haven't read through this thread, I found it to be quite helpful regarding this topic.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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