Hi,
I've been told that at present I'm in complete response (CR). Bone marrow biopsy confirmed it also after induction treatment.
At the moment I've been told there is no trace, but it can still be in the bone marrow even though biopsy was clear. I'm having my stem cell transplant at the start of November.
After my transplant, will the doctors know if it has worked if I'm already in CR now? Will they just give me the same results I have now after transplant? Or are they hoping it will make the CR longer if I'm in CR now?
Hope that makes sense. Thanks.
Forums
8 posts
• Page 1 of 1
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Stem cell transplant when you've had a complete response
Hi Dean,
A complete response (CR) is one level of response down from a strict complete response (sCR). Since you are in CR and not sCR and you say you have "no trace" of clonal cells from your bone marrow biopsy ("no trace" in this context would need to mean that there were no clonal cells detected via immunochemistry or by 2 or 4-color flow cytometry on your bone marrow biopsy test), then your free light chain numbers must still be a bit skewed for them not to have classified you as being in sCR.
Post-transplant, I would therefore imagine that your docs will be looking to see that you maintain all the criteria of a complete response AND that your free light chain numbers hopefully improve further.
See this recent post from TerryH to be better understand the differences between CR and sCR, including the recently updated response definitions per the IMWG.
One minor thing to note on TerryH's above post is that in addition to the definitions that were provided, it is my understanding that 2 or 4-color flow cytometry analysis of bone marrow aspirates can be used instead of immunochemistry to verify the absence of clonal cells in a bone marrow biopsy.
A complete response (CR) is one level of response down from a strict complete response (sCR). Since you are in CR and not sCR and you say you have "no trace" of clonal cells from your bone marrow biopsy ("no trace" in this context would need to mean that there were no clonal cells detected via immunochemistry or by 2 or 4-color flow cytometry on your bone marrow biopsy test), then your free light chain numbers must still be a bit skewed for them not to have classified you as being in sCR.
Post-transplant, I would therefore imagine that your docs will be looking to see that you maintain all the criteria of a complete response AND that your free light chain numbers hopefully improve further.
See this recent post from TerryH to be better understand the differences between CR and sCR, including the recently updated response definitions per the IMWG.
One minor thing to note on TerryH's above post is that in addition to the definitions that were provided, it is my understanding that 2 or 4-color flow cytometry analysis of bone marrow aspirates can be used instead of immunochemistry to verify the absence of clonal cells in a bone marrow biopsy.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stem cell transplant when you've had a complete response
Hi Dean.
My husband was also in the spot you are in. I think if you search forum posts on the subject of stem cell transplants, minimal residual disease (MRD) testing, and younger age or higher risk cytogenetics, you will find a number of people who have asked and/or been perplexed by the same questions.
Personally, I've discussed the issues and confusion about myeloma response terms, be they very good partial response (VGPR), complete response (CR), stringent complete response (sCR), and use or lack of use of MRD testing with patients, other caregivers, and our specialists.
Early on, we were told about a patient at our center who had a stringent complete response (sCR) and recurred 6 months after his stem cell transplant. My thoughts were "not very stringent," and these terms are more useful to those looking at bone marrow biopsies and pathology and overall survival trends than they are for any single patient. They are more useful in aggregate. they have predictive value, but there are always outliers.
Your complete response means you have no evidence of myeloma proteins in blood or urine and <5% plasma cells on bone marrow biopsy.
If you have "no trace", that MAY mean you have no trace of clonal cells on pathology slide review, or that they have done immunofluorescence or immunohistochemistry, which are negative and you are in stringent complete response, or that they have done MRD testing and they cannot find any myeloma cells down to 1 in a million cell testing.
But as your specialists say, it may still be in your bone marrow (at less than 1 in a million cells if MRD testing was done and was negative).
That's where we were in May before our transplant (sCR and MRD negative) and we're still there.
On the positive side, your pre-transplant response is as good as one could hope for. And to your question, the doctors would not expect your post transplant testing to be worse and are indeed hoping for a longer complete response with the transplant. If they haven't done immunofluorescence or histochemistry or MRD testing, that might give you some additional information.
My husband had higher risk cytogenetics but has responded very well to his chemo and his autologous stem cell transplant. He's on a planned 22-month maintenance schedule hoping for a very long response (and maybe an eventual cure?).
Best wishes to you.
My husband was also in the spot you are in. I think if you search forum posts on the subject of stem cell transplants, minimal residual disease (MRD) testing, and younger age or higher risk cytogenetics, you will find a number of people who have asked and/or been perplexed by the same questions.
Personally, I've discussed the issues and confusion about myeloma response terms, be they very good partial response (VGPR), complete response (CR), stringent complete response (sCR), and use or lack of use of MRD testing with patients, other caregivers, and our specialists.
Early on, we were told about a patient at our center who had a stringent complete response (sCR) and recurred 6 months after his stem cell transplant. My thoughts were "not very stringent," and these terms are more useful to those looking at bone marrow biopsies and pathology and overall survival trends than they are for any single patient. They are more useful in aggregate. they have predictive value, but there are always outliers.
Your complete response means you have no evidence of myeloma proteins in blood or urine and <5% plasma cells on bone marrow biopsy.
If you have "no trace", that MAY mean you have no trace of clonal cells on pathology slide review, or that they have done immunofluorescence or immunohistochemistry, which are negative and you are in stringent complete response, or that they have done MRD testing and they cannot find any myeloma cells down to 1 in a million cell testing.
But as your specialists say, it may still be in your bone marrow (at less than 1 in a million cells if MRD testing was done and was negative).
That's where we were in May before our transplant (sCR and MRD negative) and we're still there.
On the positive side, your pre-transplant response is as good as one could hope for. And to your question, the doctors would not expect your post transplant testing to be worse and are indeed hoping for a longer complete response with the transplant. If they haven't done immunofluorescence or histochemistry or MRD testing, that might give you some additional information.
My husband had higher risk cytogenetics but has responded very well to his chemo and his autologous stem cell transplant. He's on a planned 22-month maintenance schedule hoping for a very long response (and maybe an eventual cure?).
Best wishes to you.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Stem cell transplant when you've had a complete response
Thank you both for your replies. Both are a great help. I was told today I'm in a stringent complete response (sCR), so I hope it stays that way before transplant.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Stem cell transplant when you've had a complete response
Hi Dean,
I'm also at complete response (CR) after a couple of rounds of Velcade, Revlimid, and dexamethasone (VRd). I responded very well to the drugs, and it was recommended I get an autologous stem cell transplant. I haven't been tested for stringent complete response (sCR) or minimal residual disease (MRD) and my specialist doesn't see the benefit to do so. Not sure why, but I continue to be confused about the transplant and its benefits.
If suppose I am sCR, what can I hope for with the transplant – to be sCR after the transplant? Quite an ordeal to endure to be in the same place. I understand the progression-free survival is better, but I'm not sure about the overall survival benefit, plus the fact that I'll probably be out of commission for about 3 months.
So for now I'm opting to just have my stem cells harvested and put on ice. If I relapse, that is still a choice but for now. Lot of different opinions on this subject, but for me, I don't think there is a real compelling reason to pursue the transplant at this time considering the success with the novel drugs.
I'm also at complete response (CR) after a couple of rounds of Velcade, Revlimid, and dexamethasone (VRd). I responded very well to the drugs, and it was recommended I get an autologous stem cell transplant. I haven't been tested for stringent complete response (sCR) or minimal residual disease (MRD) and my specialist doesn't see the benefit to do so. Not sure why, but I continue to be confused about the transplant and its benefits.
If suppose I am sCR, what can I hope for with the transplant – to be sCR after the transplant? Quite an ordeal to endure to be in the same place. I understand the progression-free survival is better, but I'm not sure about the overall survival benefit, plus the fact that I'll probably be out of commission for about 3 months.
So for now I'm opting to just have my stem cells harvested and put on ice. If I relapse, that is still a choice but for now. Lot of different opinions on this subject, but for me, I don't think there is a real compelling reason to pursue the transplant at this time considering the success with the novel drugs.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Stem cell transplant when you've had a complete response
Hi Dean,
You've gotten some good information in this thread already in response to your question. I'd just like to add a little bit more.
I think the simple answer is that you will never actually know how much the transplant helps you. The reason is that we all are little mini-experiments with a sample size of 1. And, unfortunately, no control group. There's no way to know what would have happened if you had made a different choice - in your case, not having the transplant - on the experiment results that really matter, how long until you relapse and how long you survive.
That said, though, one way to look at the potential benefit of the transplant is that the assumption has to be that there are still myeloma cells in your bone marrow, even if they are at so low a level that they are not detectable by the tests your doctor is using. And, hopefully the transplant would drive that number even lower, further into the undetectable zone. Does going that much lower lead to longer progression-free survival (PFS) and overall survival (OS)? Again, that's hard to say, but it can't hurt.
From another angle, each of us has multiple forms (or clones) of myeloma in us. Some of those clones are more sensitive to some drugs than to other drugs. Recent research seems to suggest that it is better to hit the myeloma with a wide range of drugs during first line treatment in order to attack as many of those different clones as possible. Hence the popularity of 3-agent induction therapy. You can think of the melphalan use in the transplant as yet another type of agent that could possibly target other myeloma clones that might have been missed by whatever induction agents you had.
Finally, I should add that the question of whether or not to have an up-front transplant is one of the big questions many of us patients need to grapple with. It's not an easy decision, but an important one. There are pros and cons both ways.
Best of luck to you!
Mike
You've gotten some good information in this thread already in response to your question. I'd just like to add a little bit more.
I think the simple answer is that you will never actually know how much the transplant helps you. The reason is that we all are little mini-experiments with a sample size of 1. And, unfortunately, no control group. There's no way to know what would have happened if you had made a different choice - in your case, not having the transplant - on the experiment results that really matter, how long until you relapse and how long you survive.
That said, though, one way to look at the potential benefit of the transplant is that the assumption has to be that there are still myeloma cells in your bone marrow, even if they are at so low a level that they are not detectable by the tests your doctor is using. And, hopefully the transplant would drive that number even lower, further into the undetectable zone. Does going that much lower lead to longer progression-free survival (PFS) and overall survival (OS)? Again, that's hard to say, but it can't hurt.
From another angle, each of us has multiple forms (or clones) of myeloma in us. Some of those clones are more sensitive to some drugs than to other drugs. Recent research seems to suggest that it is better to hit the myeloma with a wide range of drugs during first line treatment in order to attack as many of those different clones as possible. Hence the popularity of 3-agent induction therapy. You can think of the melphalan use in the transplant as yet another type of agent that could possibly target other myeloma clones that might have been missed by whatever induction agents you had.
Finally, I should add that the question of whether or not to have an up-front transplant is one of the big questions many of us patients need to grapple with. It's not an easy decision, but an important one. There are pros and cons both ways.
Best of luck to you!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Stem cell transplant when you've had a complete response
Dean,
We're in the same boat and about the same age. I was told I was also in complete response (CR) after four months of induction therapy, but am scheduled to undergo a transplant in November as well. I was told by two specialists that, if they were me, they would do it, as our younger age gives us a much better shot at a longer complete remission and eventual cure.
Best of luck to you.
We're in the same boat and about the same age. I was told I was also in complete response (CR) after four months of induction therapy, but am scheduled to undergo a transplant in November as well. I was told by two specialists that, if they were me, they would do it, as our younger age gives us a much better shot at a longer complete remission and eventual cure.
Best of luck to you.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Stem cell transplant when you've had a complete response
Thanks for all your replies.
Chad, good luck with the stem cell transplant. When is your date?
Regards, Dean
Chad, good luck with the stem cell transplant. When is your date?
Regards, Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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