Folks,
We are debating if we should proceed to ASCT or straight into maintenance. Any opinion will help.
My Dad is 61 yo. He was diagnosed with kappa myeloma, high risk. After 10 cycles of VTD, his kappa went down from 700 at initial diagnosis to 100 ish. It came down to 90ish, but went up again and stabilized at 100ish.
So Doc said ASCT must be done. He was given high dose cytoxan for stemcell harvesting. His kappa went down to 85. Sice time interval between collection and ASCT is 2mo, Doc said 1 more cycle of VTD was necessary. Amazngly, after this one cycle, kappa went down to 30 (normal range is 19.5).
Now, he's in remission. Had we checked for m-spike, it's got to be zero.
Doc said that no doubt ASCT must be done because of his p53 del. The remission may not last that long.
Dad insisted to wait. I am very tired dealing with his whine. He does not follow myeloma news, and he argues with me all the time, as if he reads. And now he's trying to argue with the Doc. Any opinion whether we should proceed or wait will be much aporeciated. Thanks.
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Re: ASCT now or later? please help...
Hi tpt,
It's great to hear that your father has been responding well to his treatment.
You probably haven't gotten any responses to the question you've asked because you're touching on one of the big controversies in the treatment of multiple myeloma: when to do a stem cell transplant. Does it make sense to do a stem cell transplant right after induction therapy? Or is it better to wait and do the transplant after the first relapse?
I believe that, back before there were the newer drugs like Velcade and Revlimid, there was good data from clinical trials showing that early transplantation was the better strategy.
But people have started to question whether those data are as relevant now that we have the newer, more effective treatments like thalidomide, Velcade, and Revlimid.
There's even a major clinical trial going on right now that is attempting to answer exactly this question.
I do think, however, that many (maybe even a significant majority) of myeloma specialists would agree that, given that your father a higher-risk form of myeloma, it makes more sense for him to have his transplant now rather than later.
Even more importantly, if you and your father generally have faith in the knowledge and expertise of the myeloma specialist who is treating your father, and the physician feels it is better to do the transplant now, I think that's a pretty strong argument in favor of doing it now.
I wish we could point you to some articles saying "Yes, absolutely, now is the time for someone with myeloma like your father's to do a transplant." But the challenge of dealing with myeloma is that the data out there just aren't as clear cut.
That's why it's important to work with a physician who has enough experience that you feel you can trust their advice.
Good luck to you and your father.
R.
It's great to hear that your father has been responding well to his treatment.
You probably haven't gotten any responses to the question you've asked because you're touching on one of the big controversies in the treatment of multiple myeloma: when to do a stem cell transplant. Does it make sense to do a stem cell transplant right after induction therapy? Or is it better to wait and do the transplant after the first relapse?
I believe that, back before there were the newer drugs like Velcade and Revlimid, there was good data from clinical trials showing that early transplantation was the better strategy.
But people have started to question whether those data are as relevant now that we have the newer, more effective treatments like thalidomide, Velcade, and Revlimid.
There's even a major clinical trial going on right now that is attempting to answer exactly this question.
I do think, however, that many (maybe even a significant majority) of myeloma specialists would agree that, given that your father a higher-risk form of myeloma, it makes more sense for him to have his transplant now rather than later.
Even more importantly, if you and your father generally have faith in the knowledge and expertise of the myeloma specialist who is treating your father, and the physician feels it is better to do the transplant now, I think that's a pretty strong argument in favor of doing it now.
I wish we could point you to some articles saying "Yes, absolutely, now is the time for someone with myeloma like your father's to do a transplant." But the challenge of dealing with myeloma is that the data out there just aren't as clear cut.
That's why it's important to work with a physician who has enough experience that you feel you can trust their advice.
Good luck to you and your father.
R.
Re: ASCT now or later? please help...
You might find the following threads to be helpful in formulating an opinion on whether to opt for an ASCT or not. I know I did. HOWEVER, note that that the situation with the p53 del didn't enter into this discussion and must definitely be considered, as your doc says. Deleterious cytogenetics tends to put a whole different spin on the ASCT question, as you will find when you read through this forum.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
You can also find a discussion on the p53 del here:
https://myelomabeacon.org/forum/looking-for-anyone-with-deletion-13q-with-p53-deletion-t524.html?hilit=p53
Good luck to you and your dad.
Regards,
Multibilly
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
You can also find a discussion on the p53 del here:
https://myelomabeacon.org/forum/looking-for-anyone-with-deletion-13q-with-p53-deletion-t524.html?hilit=p53
Good luck to you and your dad.
Regards,
Multibilly
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: ASCT now or later? please help...
My father had the best outcome from his induction therapy. I was so nervous about the ASCT and asked his myeloma team whether or not they thought it was a good idea considering his response. The physicyan's response was so simple and impactful. "We wouldn't be here discussing it if we didn't think it would get him the best overall survival."
Looking back, the anticipation and my imagination was the worst part. He got through it like a champ! (As many of these awesome people do!)
It is so tough to be in your position. Your dad just has a huge amount to manage too. Ultimately, it is your dad's choice-try as hard as you can to stay strong, positive and supportive of the path he chooses.
Looking back, the anticipation and my imagination was the worst part. He got through it like a champ! (As many of these awesome people do!)
It is so tough to be in your position. Your dad just has a huge amount to manage too. Ultimately, it is your dad's choice-try as hard as you can to stay strong, positive and supportive of the path he chooses.
Re: ASCT now or later? please help...
Thanks all for the comment and support.
We have decided to postpone the transplant... for one week (no joke--Dad wants to visit Hongkong). So, yeah, we will proceed.
Although he was diagnosed at the end of 2011 (second compression fracture), he actually experienced the first compression fracture of the spine in May 2010. Between May 2010 and end of 2011, he received no treatment, thinking it was just a regular back pain.
It's amazing that he can stay healthy for almost three years--even with 17p del. There's really hope with multiple myeloma.
I hope all of you are well. I trust that all of you are well. Thanks.
We have decided to postpone the transplant... for one week (no joke--Dad wants to visit Hongkong). So, yeah, we will proceed.
Although he was diagnosed at the end of 2011 (second compression fracture), he actually experienced the first compression fracture of the spine in May 2010. Between May 2010 and end of 2011, he received no treatment, thinking it was just a regular back pain.
It's amazing that he can stay healthy for almost three years--even with 17p del. There's really hope with multiple myeloma.
I hope all of you are well. I trust that all of you are well. Thanks.
Re: ASCT now or later? please help...
The debate over ASCT now or later is significant and from this forum it appears to be heated. We had reasons for "now" rather than later that I thought I'd share.
1. Current "good health" - hearts, lungs, kidneys and liver are good and no comorbidities that could make ASCt more challenging down the road. Age can be a factor and none of us is getting any younger so now seemed the right time.
2. This was a big one - in the bone marrow there are genomic sequence variants that wax and wane in progressive tumors with shifting dominance of tumor clones over time. HD can shut these down early on extending time to shifting or even preventing some mutations.
3. The QOL (quality of life) issues around dex, Revlimid and Velcade based regimes. Dealing with the dex is tough enough and the risk of nerve damage from long term Velcade based regimes (even subcutaneous or oral) as well as increased secondary cancers from Revlimid was a factor for us. Not that ASCT means drug free, but maintenance is a different regime.
4. Hope - hope that they will perfect the new "mini" allogeneic transplants soon or develop immunotherapy or a different cure down the road and that the ASCT now will take for long enough for us to get to this place of hope. And hope that the years after ASCT are good ones.
Best of luck to your Dad and all of you!
1. Current "good health" - hearts, lungs, kidneys and liver are good and no comorbidities that could make ASCt more challenging down the road. Age can be a factor and none of us is getting any younger so now seemed the right time.
2. This was a big one - in the bone marrow there are genomic sequence variants that wax and wane in progressive tumors with shifting dominance of tumor clones over time. HD can shut these down early on extending time to shifting or even preventing some mutations.
3. The QOL (quality of life) issues around dex, Revlimid and Velcade based regimes. Dealing with the dex is tough enough and the risk of nerve damage from long term Velcade based regimes (even subcutaneous or oral) as well as increased secondary cancers from Revlimid was a factor for us. Not that ASCT means drug free, but maintenance is a different regime.
4. Hope - hope that they will perfect the new "mini" allogeneic transplants soon or develop immunotherapy or a different cure down the road and that the ASCT now will take for long enough for us to get to this place of hope. And hope that the years after ASCT are good ones.
Best of luck to your Dad and all of you!
-
patience in boston
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