Hi,
Steve here. I am new to the forum.
Just went through 4 rounds of Revlimid, Velcade, and dexamethasone (RVD). I have light chain multiple myeloma. 55 years old male in the New York area. Found out I have multiple myeloma by accident due to low immunoglobulin 6 months ago.
IgG - 378
IgA - 13
IgM <20
I do not get sick. Had some bone lesions. These have not really changed.
I have also been borderline anemic for years, which also has not changed much.
RBC - 4.37
Hemoglobin - 12.2
Hematocrit - 37.9.
My kappa serum free light chain went from 1000 to 54.3 (3.3-19.4 mg/l normal range); still high.
Lambda serum free light chain now normal, 7.2 (5.7-26.3 mg/l normal range).
Kappa / lambda free light chain ratio 7.54 (0.26-1.65 normal range), still high.
I have not repeated 24 hour urine yet. I am suppose to go in for a stem cell harvest in 2 weeks and maybe a stem cell transplant to follow. Insurance issue just came up with change from my company. My bone marrow biopsy just came back with no signs of multiple myeloma; it was 25% 6 months ago. Great news.
Doctors not giving me straight answer on how anemia and immunoglobulins have not changed and kappa still not normal but myeloma no longer in bone marrow.
So what will it mean to go through transplant and still have (self diagnosis) light chain MGUS when done and will myeloma come back faster in my case.
Thank you to anyone who can suggest.
Forums
4 posts
• Page 1 of 1
Re: Conflicting signs about how responding to treatment
Hello SWC:
Getting the light chain form of multiple myeloma is inherently more tricky. It appears that your main argument for additional treatment is your still slightly elevated kappa level. Maybe someone can help out with what exactly is the definition for complete response (CR) for light chain newly diagnosed multiple myeloma (NDMM), I am not sure of that.
First thought, did they test for minimal residual disease (MRD) in your last bone marrow biopsy? If you did not get to MRD-, then I think many doctors would think that an autologous stem cell transplant (ASCT) would probably be appropriate.
I have no good reason to second guess your doctor, however, recent research is looking into the question of transplant at new diagnosis or transplant at first relapse. Based on early results, there does not yet seem to be a huge difference in overall survival between the two, though I understand that early transplant has better progression-free survival (longer time to first relapse).
As for the immunoglobulins, it is normal for RVD to suppress them, so at your levels I do not think they are the best indicator of response. As far as hemoglobin, I think that you are probably close enough to normal, that it tells you nothing about what's really going on. You could have active multiple myeloma with good hemoglobin, and express it with one of the other "CRAB" symptoms. Your issue of potential concern seems to be the initial bone lesions. You probably want to investigate how many and how big, as these have recently been updated in the definition of active multiple myeloma from the International Myeloma Working Group.
I would say that if you went and got a second opinion, you might find a doctor that would find it acceptable to get to complete response with additional treatment, then ride it out with maintenance, and transplant at first relapse. If you got a real long relapse, maybe there would be better meds to use at that time. As you yourself indicate, it does seem to be a close call in your case. Good luck.
Getting the light chain form of multiple myeloma is inherently more tricky. It appears that your main argument for additional treatment is your still slightly elevated kappa level. Maybe someone can help out with what exactly is the definition for complete response (CR) for light chain newly diagnosed multiple myeloma (NDMM), I am not sure of that.
First thought, did they test for minimal residual disease (MRD) in your last bone marrow biopsy? If you did not get to MRD-, then I think many doctors would think that an autologous stem cell transplant (ASCT) would probably be appropriate.
I have no good reason to second guess your doctor, however, recent research is looking into the question of transplant at new diagnosis or transplant at first relapse. Based on early results, there does not yet seem to be a huge difference in overall survival between the two, though I understand that early transplant has better progression-free survival (longer time to first relapse).
As for the immunoglobulins, it is normal for RVD to suppress them, so at your levels I do not think they are the best indicator of response. As far as hemoglobin, I think that you are probably close enough to normal, that it tells you nothing about what's really going on. You could have active multiple myeloma with good hemoglobin, and express it with one of the other "CRAB" symptoms. Your issue of potential concern seems to be the initial bone lesions. You probably want to investigate how many and how big, as these have recently been updated in the definition of active multiple myeloma from the International Myeloma Working Group.
I would say that if you went and got a second opinion, you might find a doctor that would find it acceptable to get to complete response with additional treatment, then ride it out with maintenance, and transplant at first relapse. If you got a real long relapse, maybe there would be better meds to use at that time. As you yourself indicate, it does seem to be a close call in your case. Good luck.
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JPC - Name: JPC
Re: Conflicting signs about how responding to treatment
The issues you have raised have not even been resolved by the medical experts, and there is no right or wrong answer.
I also have kappa light chain multiple myeloma, IGA variety. My kappa light chains were 12,000 on diagnosis, so your numbers don't look so bad to me. I was very fortunate to respond very well to treatment, but I did have a stem cell transplant in October, 2014, after about 5 months of RVD. I am also in New York, and had my transplant at Weill Cornell. I was out in 17 days, but it did take me several months to recuperate and get my strength back. My biggest challenge was nausea. I did not have any serious complications, such as infections. I am 60 now, so at time of transplant I was 59, and in pretty good shape other than the myeloma. No high blood pressure, heart problems, diabetes, or other chronic illnesses.
I decided to have the transplant because, although I had no M-spike, I still had some M-protein being detected in my blood. My light chains, however, had normalized, ratio as well.
There is some evidence to suggest that Velcade is particularly effective in light chain myeloma. I am currently on a maintenance regimen of Velcade and dex bi-weekly. I am in string complete remission (sCR) at the moment, hoping that it lasts.
What were your cytogenetics at diagnosis? I had 1Q21 addition, which depending upon the interpretation of different experts, is sometimes considered high risk, although Mayo considers it intermediate risk. This was one of the reasons I decided to have the stem cell transplant.
I saw several oncologists, including a couple of myeloma specialists. In the end, the decision was mine to make, in conjunction with my family. You and I are lucky to live in New York City with all of the great hospitals and doctors available. See a myeloma specialist or two. That will give you peace of mind with your decision.
I wish you all the best. It sounds as though you are doing very well. if you have any questions, there are some great people here on the forum.
Your blood work looks pretty good to me! Your immunoglobulins are probably suppressed due to treatment. Your hemoglobin is almost normal.
Keep us posted, and best of luck!
Ellen Harris
I also have kappa light chain multiple myeloma, IGA variety. My kappa light chains were 12,000 on diagnosis, so your numbers don't look so bad to me. I was very fortunate to respond very well to treatment, but I did have a stem cell transplant in October, 2014, after about 5 months of RVD. I am also in New York, and had my transplant at Weill Cornell. I was out in 17 days, but it did take me several months to recuperate and get my strength back. My biggest challenge was nausea. I did not have any serious complications, such as infections. I am 60 now, so at time of transplant I was 59, and in pretty good shape other than the myeloma. No high blood pressure, heart problems, diabetes, or other chronic illnesses.
I decided to have the transplant because, although I had no M-spike, I still had some M-protein being detected in my blood. My light chains, however, had normalized, ratio as well.
There is some evidence to suggest that Velcade is particularly effective in light chain myeloma. I am currently on a maintenance regimen of Velcade and dex bi-weekly. I am in string complete remission (sCR) at the moment, hoping that it lasts.
What were your cytogenetics at diagnosis? I had 1Q21 addition, which depending upon the interpretation of different experts, is sometimes considered high risk, although Mayo considers it intermediate risk. This was one of the reasons I decided to have the stem cell transplant.
I saw several oncologists, including a couple of myeloma specialists. In the end, the decision was mine to make, in conjunction with my family. You and I are lucky to live in New York City with all of the great hospitals and doctors available. See a myeloma specialist or two. That will give you peace of mind with your decision.
I wish you all the best. It sounds as though you are doing very well. if you have any questions, there are some great people here on the forum.
Your blood work looks pretty good to me! Your immunoglobulins are probably suppressed due to treatment. Your hemoglobin is almost normal.
Keep us posted, and best of luck!
Ellen Harris
Re: Conflicting signs about how responding to treatment
I second Ellen's first sentence, she said a bit more succinctly what I was trying to say.
One more point: Make sure that you and your doctor are up to speed on your FISH tests. Bad cytogenetics would probably suggest it's more appropriate to proceed with the autologous stem cell transplant, and favorable (standard risk) would lean more towards not needing it immediately, in general.
Good luck.
One more point: Make sure that you and your doctor are up to speed on your FISH tests. Bad cytogenetics would probably suggest it's more appropriate to proceed with the autologous stem cell transplant, and favorable (standard risk) would lean more towards not needing it immediately, in general.
Good luck.
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JPC - Name: JPC
4 posts
• Page 1 of 1