Hi everyone -
My husband was diagnosed in April 2015. In October 2015, after 4 cycles of Revlimid, Velcade, and dexamethasone (RVD) and a month of maintenance, he stopped therapy due to side effects (GI issues, neuropathy), with the assumption that we would resume maintenance when neuropathy improves.
His M-spike has been low (0.14 -0.26 g/dL, or 1.4-2.6 g/L) since October, but this month – 90 days after his last treatment – he has no M-spike at all. We have been so happily surprised by his great response, particularly without any treatment!
My question is, since his cancer continued to respond long after he has ceased any treatment, would we be wise to ask for a bone marrow biopsy (BMB)? I understand this is the only way we would know if he is in a stringent complete remission (sCR).
Does it matter?
Thank you for any similar experiences or recommendations.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: CR achieved without therapy - do we ask for BMB?
Hi Laurie,
Congrats on your husband's M-spike readings!
What have his lambda and kappa FLC chain numbers done in that same period?
Did the serum immunofixation test also show up as negative for monoclonal protein?
Note that you also cannot say that your husband has a CR without knowing his bone marrow plasma percentage (BMPC) . A BMPC reading is required for CR and SCR response designations. One can only assign a VGPR or a PR response level without having a BMPC reading.
But I think the question you have to ask yourself is what would you do if his response status is VGPR versus SCR or CR? Would you simply stay the current planned maintenance course until relapse in either situation? What are your plans if he relapses? A different drug combo? A transplant?
Although it doesn't happen that often, I think one of the primary reasons one would want to do a bone marrow biopsy would be to make sure that the disease had not morphed into a non or partially secretory form of multiple myeloma (where the M-spike and FLC chain numbers no longer serve as accurate surrogate measures of the disease burden).
Regardless, I know for sure I would want to know my BMB results because I am that kind of personality and it gives me peace knowing all of my numbers (good or bad) and not having to speculate on what they may or may not be doing. But I'm not clear that your doctor would agree that a BMB is required at this point. Others on the forum may have a different opinion.
Congrats on your husband's M-spike readings!
What have his lambda and kappa FLC chain numbers done in that same period?
Did the serum immunofixation test also show up as negative for monoclonal protein?
Note that you also cannot say that your husband has a CR without knowing his bone marrow plasma percentage (BMPC) . A BMPC reading is required for CR and SCR response designations. One can only assign a VGPR or a PR response level without having a BMPC reading.
But I think the question you have to ask yourself is what would you do if his response status is VGPR versus SCR or CR? Would you simply stay the current planned maintenance course until relapse in either situation? What are your plans if he relapses? A different drug combo? A transplant?
Although it doesn't happen that often, I think one of the primary reasons one would want to do a bone marrow biopsy would be to make sure that the disease had not morphed into a non or partially secretory form of multiple myeloma (where the M-spike and FLC chain numbers no longer serve as accurate surrogate measures of the disease burden).
Regardless, I know for sure I would want to know my BMB results because I am that kind of personality and it gives me peace knowing all of my numbers (good or bad) and not having to speculate on what they may or may not be doing. But I'm not clear that your doctor would agree that a BMB is required at this point. Others on the forum may have a different opinion.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: CR achieved without therapy - do we ask for BMB?
Iwem and Multibilly, I find the question of bone marrow biopsies puzzling.
1) If you have no M-spike, and your immunofixation, SPEP, and light chains indicate no myeloma, how can you rely on a BMB, given the patchy nature of myeloma?
2) The possibility of non-secretory myeloma popping up scares and concerns me, too, but wouldn't an easier way to track the myeloma in that case be to closely observe the creatinine, calcium, and hemoglobin markers from month to month? Wouldn't undue changes in these markers be equally reliable and less invasive than a BMB?
Multibilly, I am interested in your thoughts on this, especially #2 above.
1) If you have no M-spike, and your immunofixation, SPEP, and light chains indicate no myeloma, how can you rely on a BMB, given the patchy nature of myeloma?
2) The possibility of non-secretory myeloma popping up scares and concerns me, too, but wouldn't an easier way to track the myeloma in that case be to closely observe the creatinine, calcium, and hemoglobin markers from month to month? Wouldn't undue changes in these markers be equally reliable and less invasive than a BMB?
Multibilly, I am interested in your thoughts on this, especially #2 above.
Re: CR achieved without therapy - do we ask for BMB?
Thank you Multibilly - I didn't articulate my question well, but you got it. I guess I am wondering whether we should ask for a BMB to help in making treatment decisions as to what is next. Obviously, with this great response, my thoughts go to just moving forward with some maintenance (Rd). But if a BMB tells us something different, would that help with decision making? I am guessing that the BMB would show similar good response, and the doctor will say its not necessary, or that it wouldn't change treatment recommendations.
Both SPEP and IFE show "no monoclonal gammopathy" and "no M-spike." I think it is so interesting he has achieved this level of remission without any chemotherapy for the last 3 months.
I did note that the K/L ratio was higher this month (4.46), it had been in normal range before with a small M-spike. I have been reading the threads on a high ratio with no M-spike; he has been getting IVIG so am not sure whether this has thrown it off, or if it may be due to a very low Lambda light chain. Kappa itself is in normal range.
I am like you - - I want all the information I can get to weigh. My husband is 69 and does not want to have a transplant if it is not indicated - - if maintenance will keep the myeloma at bay, this is the path we will go. I just feel like I would like to see what the BMB is to make sure we are doing the right thing.
Thank you again!
Both SPEP and IFE show "no monoclonal gammopathy" and "no M-spike." I think it is so interesting he has achieved this level of remission without any chemotherapy for the last 3 months.
I did note that the K/L ratio was higher this month (4.46), it had been in normal range before with a small M-spike. I have been reading the threads on a high ratio with no M-spike; he has been getting IVIG so am not sure whether this has thrown it off, or if it may be due to a very low Lambda light chain. Kappa itself is in normal range.
I am like you - - I want all the information I can get to weigh. My husband is 69 and does not want to have a transplant if it is not indicated - - if maintenance will keep the myeloma at bay, this is the path we will go. I just feel like I would like to see what the BMB is to make sure we are doing the right thing.
Thank you again!
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: CR achieved without therapy - do we ask for BMB?
Thank you Mrozdav -
your questions answered some of mine - I was wondering whether a BMB would give us more information, or whether the results would matter in making treatment decisions. Your questions actually, I think, answer mine - that a BMB would not give us any additional useful information and wouldn't help in making treatment decisions going forward, particularly given that it is invasive.
I didn't know that nonsecretory myeloma can be tracked with creatinine, calcium and hemoglobin. These results are normal (although creatinine is low). That helps as well and i will keep an eye on those values.
Thank you.
your questions answered some of mine - I was wondering whether a BMB would give us more information, or whether the results would matter in making treatment decisions. Your questions actually, I think, answer mine - that a BMB would not give us any additional useful information and wouldn't help in making treatment decisions going forward, particularly given that it is invasive.
I didn't know that nonsecretory myeloma can be tracked with creatinine, calcium and hemoglobin. These results are normal (although creatinine is low). That helps as well and i will keep an eye on those values.
Thank you.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: CR achieved without therapy - do we ask for BMB?
Mrodzav,
I think most nonsecretory multiple myeloma patients on this forum could only wish that they could track their disease through simple CBC and metabolic panel test results. After all, if you could use those markers to track nonsecretory disease progression and response, then you could use those same markers to track "normal" secretory multiple myeloma patients. But you can't.
As an example I had a 11% BMPC reading at diagnosis, yet my creatinine, hemoglobin and calcium levels are all just dandy and well in their normal ranges and are trending nicely. In fact, my values for these markers are just about the same as they were 3 years ago. But my M-spike has increased ~ 50% since my initial diagnosis over 3 years ago (1.6 g/dL to 2.4 g/dL...although it has been holding fairly steady for quite some time).
Additionally, one can have serious bone damage develop without necessarily seeing a change in any of the CBC/metabolic markers you mentioned.
Yes, BMB results can be hit or miss. But if you do several BMBs over time and/or use PET/CTs or MRIs to evaluate the disease, then one should start to get a pretty good handle on what's happening in one's bone marrow.
You might also find this article to be insightful:
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
Laurie, BTW, please don't be alarmed by this and start thinking that your husband may now have nonsecretory multiple myeloma. It's very seldom that a multiple myeloma patient goes from being secretory to nonsecretory.
I think most nonsecretory multiple myeloma patients on this forum could only wish that they could track their disease through simple CBC and metabolic panel test results. After all, if you could use those markers to track nonsecretory disease progression and response, then you could use those same markers to track "normal" secretory multiple myeloma patients. But you can't.
As an example I had a 11% BMPC reading at diagnosis, yet my creatinine, hemoglobin and calcium levels are all just dandy and well in their normal ranges and are trending nicely. In fact, my values for these markers are just about the same as they were 3 years ago. But my M-spike has increased ~ 50% since my initial diagnosis over 3 years ago (1.6 g/dL to 2.4 g/dL...although it has been holding fairly steady for quite some time).
Additionally, one can have serious bone damage develop without necessarily seeing a change in any of the CBC/metabolic markers you mentioned.
Yes, BMB results can be hit or miss. But if you do several BMBs over time and/or use PET/CTs or MRIs to evaluate the disease, then one should start to get a pretty good handle on what's happening in one's bone marrow.
You might also find this article to be insightful:
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
Laurie, BTW, please don't be alarmed by this and start thinking that your husband may now have nonsecretory multiple myeloma. It's very seldom that a multiple myeloma patient goes from being secretory to nonsecretory.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: CR achieved without therapy - do we ask for BMB?
Iwem, I did not mean to give you the impression that non-secretory myeloma can be tracked with calcium, creatinine and hemoglobin markers. I just do not know, but think that, logically, there would have to be observable changes in these in the event of active myeloma because the CRAB symptoms must still be present no matter what kind of myeloma you may have, right? The thought that, in the event of non-secretory myeloma, I would have to go through monthly PET-CT scans, is terrifying. Is there no danger from excessive radiation?
Bone marrow biopsies do not thrill me either. ( I have had about five of them so far, but think that only the first one was of real value because it confirmed my active myeloma and determined my chromosomal mutations.) My doctors prescribe a skeletal survey once a year for patients like myself who are on maintenance and have normal blood test results, including immunofixation, light chains, SPEP, etc. I believe their thinking is that biopsies and PET scans should be done only when there are suspicions of some renewed myeloma activity. Part of that thinking has to do with the relative rarity of non-secretory myeloma, I suppose. Still, I am aware of the testing problems presented by non-secretory myeloma and this form of the disease is an ever present concern.
Bone marrow biopsies do not thrill me either. ( I have had about five of them so far, but think that only the first one was of real value because it confirmed my active myeloma and determined my chromosomal mutations.) My doctors prescribe a skeletal survey once a year for patients like myself who are on maintenance and have normal blood test results, including immunofixation, light chains, SPEP, etc. I believe their thinking is that biopsies and PET scans should be done only when there are suspicions of some renewed myeloma activity. Part of that thinking has to do with the relative rarity of non-secretory myeloma, I suppose. Still, I am aware of the testing problems presented by non-secretory myeloma and this form of the disease is an ever present concern.
Re: CR achieved without therapy - do we ask for BMB?
My husband had his last CyBorD treatment August 22 2014. His M-spike had gone from 5.5 at diagnosis in April 2014 to .1 when he stopped treatment. He was not able to have a transplant.
We debated maintenance, and decided against it. He wanted to be off drugs for a while and let his lungs and body heal. He does take 8gm per day of Curcumin with Bioperine.
His January 2015 results showed no monoclonal proteins, and he's still showing none. Like your husband, he continued to improve for months after stopping treatment.
We asked ourselves what we'd do differently with a bone marrow biopsy and the answer was Sweet Fanny Adams. He was getting healthier by the day and feeling great being off the meds. He gets bloodwork every 2 months, sees the HemOnc every 4 months, and does a UPEP every 6 months.
He may not technically be able to claim a CR, but this isn't a contest. He's doing well, and until his current testing regime shows otherwise he'll just keep enjoying it.
We debated maintenance, and decided against it. He wanted to be off drugs for a while and let his lungs and body heal. He does take 8gm per day of Curcumin with Bioperine.
His January 2015 results showed no monoclonal proteins, and he's still showing none. Like your husband, he continued to improve for months after stopping treatment.
We asked ourselves what we'd do differently with a bone marrow biopsy and the answer was Sweet Fanny Adams. He was getting healthier by the day and feeling great being off the meds. He gets bloodwork every 2 months, sees the HemOnc every 4 months, and does a UPEP every 6 months.
He may not technically be able to claim a CR, but this isn't a contest. He's doing well, and until his current testing regime shows otherwise he'll just keep enjoying it.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: CR achieved without therapy - do we ask for BMB?
Lisa,
Thank you so much for this post - very helpful!
Thank you so much for this post - very helpful!
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
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