If you reach MRD [minimal residual disease] negativity with induction, should you go ahead with an early transplant because your cytogenics show higher risk, more aggressive disease?
What is the goal of a stem cell transplant (SCT) if you have already reached MRD negativity? How will it be determined if your SCT was successful?
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: MRD and SCT with higher risk myeloma
Hi Britt,
Did your dad reach MRD negative status after his induction therapy? If so, that's great!
I see from your earlier postings that your dad is being seen at Dana-Farber. Do they feel he should get a stem cell transplant even though he's reach MRD negative status and, if so, what is their reasoning?
Thanks!
Did your dad reach MRD negative status after his induction therapy? If so, that's great!
I see from your earlier postings that your dad is being seen at Dana-Farber. Do they feel he should get a stem cell transplant even though he's reach MRD negative status and, if so, what is their reasoning?
Thanks!
Re: MRD and SCT with higher risk myeloma
Following. Very interested in the replies you receive on this topic.
Re: MRD and SCT with higher risk myeloma
Dana-Farber is recommending a stem cell transplant even though your father has reached MRD negative status? That is really interesting, given that Dana-Farber is not known for being particularly in favor of doing upfront transpants.
Like Cheryl, I'd be really interested to understand the logic of your father's doctors. I suspect they feel it's important in the case of a higher-risk patient that the myeloma be knocked back as much as possible.
Not surprisingly, the question of how you can know whether a transplant has been successful if a patient is in CR (or better) prior to the transplant has been asked here before. See, for example, this thread, which includes feedback from Dr. Valent:
"What's a transplant 'success' if in CR pre-transplant?" forum thread started Feb 25, 2015.
Like Cheryl, I'd be really interested to understand the logic of your father's doctors. I suspect they feel it's important in the case of a higher-risk patient that the myeloma be knocked back as much as possible.
Not surprisingly, the question of how you can know whether a transplant has been successful if a patient is in CR (or better) prior to the transplant has been asked here before. See, for example, this thread, which includes feedback from Dr. Valent:
"What's a transplant 'success' if in CR pre-transplant?" forum thread started Feb 25, 2015.
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Jonah
Re: MRD and SCT with higher risk myeloma
Hi Cheryl and Jonah,
We won't know about MRD status until Wednesday, but he needs to have his decision made about transplant (and also whether to use Cytoxan - which has the added chemo benefit - or just plerixafor / Mozobil for stem cell collection) by Friday. This is why I've posed the question to the group. Trying to be prepared!
Our DFCI specialist WILL NOT give his recommendation one way or another. He says that "Just because you've had a good response, doesn't mean you shouldn't go to transplant. If anything, it shows you are chemo sensitive and is MORE of a reason to go to transplant."
I think my dad is struggling with the fact that he feels relatively good now and doesn't want to rock the boat so to speak, completely upset his life when so much has changed already but he's living a relatively normal life - especially when you would never even know if the transplant had any benefit since he's definitely in a complete response (just not sure of MRD).
We (especially my mom and I) ask the doctor over and over - does his stage at diagnosis, chromosomal abnormalities, age, health, response to treatment thus far, etc etc etc, make it a bit clearer as to there being a benefit to transplanting at first remission? But all we get is "There is no clinical data supporting either way at this point. Results from the DFCI-IFM study won't be in on time for you to know for sure."
Whatever happened to simple recommendations based on anecdotal evidence? My dad can't be the first patient he's seen with IgA t(4;14), diagnosed stage 2 in late 50s in otherwise good health. I know there would be few, but what is the point in having a specialist if they don't use their years of experience to help you? One minute it sounds like he's recommending transplant, the next he's saying it wouldn't be crazy to wait - they'd watch him like a hawk no matter what. Then the next minute he says transplant could give him the best chance of a durable remission. Maybe. They don't know for sure because they can't really measure it because tests aren't sensitive enough.
Jonah - I'm surprised to hear that DFCI is not known for being particularly in favor of doing upfront transplants. There are a few people in our support group who have doctors at DFCI, and they've all had transplants. I thought they followed the "standard of care," which would be transplant in first remission? Haven't looked at your link yet, but I'm about to. Thanks!
My frustration must be palpable right now, even through the computer. But it's my dad's LIFE on the line! So, anyone else have answers? Examples?
We won't know about MRD status until Wednesday, but he needs to have his decision made about transplant (and also whether to use Cytoxan - which has the added chemo benefit - or just plerixafor / Mozobil for stem cell collection) by Friday. This is why I've posed the question to the group. Trying to be prepared!
Our DFCI specialist WILL NOT give his recommendation one way or another. He says that "Just because you've had a good response, doesn't mean you shouldn't go to transplant. If anything, it shows you are chemo sensitive and is MORE of a reason to go to transplant."
I think my dad is struggling with the fact that he feels relatively good now and doesn't want to rock the boat so to speak, completely upset his life when so much has changed already but he's living a relatively normal life - especially when you would never even know if the transplant had any benefit since he's definitely in a complete response (just not sure of MRD).
We (especially my mom and I) ask the doctor over and over - does his stage at diagnosis, chromosomal abnormalities, age, health, response to treatment thus far, etc etc etc, make it a bit clearer as to there being a benefit to transplanting at first remission? But all we get is "There is no clinical data supporting either way at this point. Results from the DFCI-IFM study won't be in on time for you to know for sure."
Whatever happened to simple recommendations based on anecdotal evidence? My dad can't be the first patient he's seen with IgA t(4;14), diagnosed stage 2 in late 50s in otherwise good health. I know there would be few, but what is the point in having a specialist if they don't use their years of experience to help you? One minute it sounds like he's recommending transplant, the next he's saying it wouldn't be crazy to wait - they'd watch him like a hawk no matter what. Then the next minute he says transplant could give him the best chance of a durable remission. Maybe. They don't know for sure because they can't really measure it because tests aren't sensitive enough.
Jonah - I'm surprised to hear that DFCI is not known for being particularly in favor of doing upfront transplants. There are a few people in our support group who have doctors at DFCI, and they've all had transplants. I thought they followed the "standard of care," which would be transplant in first remission? Haven't looked at your link yet, but I'm about to. Thanks!
My frustration must be palpable right now, even through the computer. But it's my dad's LIFE on the line! So, anyone else have answers? Examples?
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: MRD and SCT with higher risk myeloma
Thanks, Britt, for that detailed feedback about what you've been told at DFCI.
If I had to read between the lines, I would say that your father's doctor would tell your father to have a transplant if the decision were completely up to the doctor. However, he doesn't feel he should push that option because he doesn't feel he can do so based on the data that are out there that are relevant to the decision.
I know you want certainty and clear guidance, but I think you have to give your father's doctor credit for being intellectually honest. I suspect he probably does have a lot of evidence on the issue, based on personal experience. But some of it is probably old and outdated, and some of it may not point clearly in one direction or the other.
Maybe it would help to ask the doctor a different set of questions. Once your father has the results of his MRD testing, perhaps he could his doctor:
1. What are my options at this point?
2. For each option, approximately how long do you think it will be before my disease will start to progress again to the point that I'll need to start treatment again?
3. Is there any evidence (trial data; the doctor's personal experience; etc.) that my long-term survival (life expectancy) will be better, or worse, by pursuing any of the specific options?
Also, as I see it, the options your father currently faces are:
1. Do no further treatment at this time
2. Go on to maintenance therapy (without having a transplant)
3. Have a transplant and then do no further treatment
4. Have a transplant and then go on to maintenance therapy
Hope this helps a bit. I'll check in here again as the week goes on and try to provide more feedback if it seems like it will be helpful.
Good luck!
If I had to read between the lines, I would say that your father's doctor would tell your father to have a transplant if the decision were completely up to the doctor. However, he doesn't feel he should push that option because he doesn't feel he can do so based on the data that are out there that are relevant to the decision.
I know you want certainty and clear guidance, but I think you have to give your father's doctor credit for being intellectually honest. I suspect he probably does have a lot of evidence on the issue, based on personal experience. But some of it is probably old and outdated, and some of it may not point clearly in one direction or the other.
Maybe it would help to ask the doctor a different set of questions. Once your father has the results of his MRD testing, perhaps he could his doctor:
1. What are my options at this point?
2. For each option, approximately how long do you think it will be before my disease will start to progress again to the point that I'll need to start treatment again?
3. Is there any evidence (trial data; the doctor's personal experience; etc.) that my long-term survival (life expectancy) will be better, or worse, by pursuing any of the specific options?
Also, as I see it, the options your father currently faces are:
1. Do no further treatment at this time
2. Go on to maintenance therapy (without having a transplant)
3. Have a transplant and then do no further treatment
4. Have a transplant and then go on to maintenance therapy
Hope this helps a bit. I'll check in here again as the week goes on and try to provide more feedback if it seems like it will be helpful.
Good luck!
Re: MRD and SCT with higher risk myeloma
Update:
After some confusion between us and DFCI about what "no myeloma cells found in the bone marrow" meant regarding MRD negativity, they claim that they don't use that term but use complete response instead, and that the two terms are interchangeable.
So, after induction, my Dad has achieved a complete response and I guess MRD negativity! If he can also get a "durable remission," I believe that this bodes well for overall survival (OS), although I'm not sure if it negates his cytogenetics at all. This is the best response we could have hoped for at this point. I'm both relieved/happy and also fearful of what comes next and in the future.
Cheryl, my parents have been in contact this whole week with the transplant nurse and have asked that first set of questions you mentioned in your last post. The nurse couldn't answer them and suggested we meet again with the doctor. Not sure how or if that can happen because today is the day my dad is supposed to have his decision about pre-stem cell collection treatment and also transplanting made.
The nurse did mention an IFM study (France), which I think was discussed here on the Beacon about RVD induction, transplant, consolidation, and Revlimid maintenance. We found the study, and my dad is seriously looking at the results and comparing it to what DFCI seems to be recommending and his particular situation. Notably, 100% of participants were ALIVE 3 years post transplant, regardless of cytogenetics.
Hopefully we get some answers today about estimates on length of response and outcomes for OS with going the 3 different routes my parents are considering:
I will be sure to update if we get answers though, and will let you know about my dad's ultimate decision if anyone is interested! Hopefully his experience can help someone else.
After some confusion between us and DFCI about what "no myeloma cells found in the bone marrow" meant regarding MRD negativity, they claim that they don't use that term but use complete response instead, and that the two terms are interchangeable.
So, after induction, my Dad has achieved a complete response and I guess MRD negativity! If he can also get a "durable remission," I believe that this bodes well for overall survival (OS), although I'm not sure if it negates his cytogenetics at all. This is the best response we could have hoped for at this point. I'm both relieved/happy and also fearful of what comes next and in the future.
Cheryl, my parents have been in contact this whole week with the transplant nurse and have asked that first set of questions you mentioned in your last post. The nurse couldn't answer them and suggested we meet again with the doctor. Not sure how or if that can happen because today is the day my dad is supposed to have his decision about pre-stem cell collection treatment and also transplanting made.
The nurse did mention an IFM study (France), which I think was discussed here on the Beacon about RVD induction, transplant, consolidation, and Revlimid maintenance. We found the study, and my dad is seriously looking at the results and comparing it to what DFCI seems to be recommending and his particular situation. Notably, 100% of participants were ALIVE 3 years post transplant, regardless of cytogenetics.
Hopefully we get some answers today about estimates on length of response and outcomes for OS with going the 3 different routes my parents are considering:
- Transplant right away,
- Wait until after the summer when they've had more time to prepare/take a vacation/enjoy family events (would still be considered "early transplant" since it would be within a year),
- Wait until relapse.
I will be sure to update if we get answers though, and will let you know about my dad's ultimate decision if anyone is interested! Hopefully his experience can help someone else.
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
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