I have two questions that perhaps our more knowledgeable forum members may be able to answer:
1. What is the difference between criteria for aggressive versus refractory myeloma?
I have kappa light chain myeloma, and I asked my oncologist if I had an aggressive form, and he said I did, based on my failure to respond to Revlimid (lenalidomide) and Velcade (bortezomib). I did respond for about two months to Revlimid before my light chains began increasing again, but I did not respond at all to Velcade. I have since achieved a complete response to Cytoxan (cyclophosphamide) + Kyprolis (carfilzomib).
I know this means that I rapidly became refractory to Revlimid, and was refractory from the start to Velcade, but does this also mean I have an aggressive form? I thought an aggressive form of myeloma was indicated by cytogenetic and FISH testing. In my case, I have deletion 13q and translocation IgH 11;14, which I thought put me at "intermediate risk", and that "risk" was a measure of aggressiveness.
2. My second question has to do with what one can expect in terms of hemoglobin levels when one is in complete response (CR), which I have been declared to be for the past three months based on the free light chain serum assay.
Before I got sick, my hemoglobin was 14 g/dL. Now, after two months of CR, it hovers around 10, plus or minus about 1 g/dL (based on tests every two weeks). Can I expect it to recover to a normal level while in CR?
Thanks to anyone who may be able to shed light on these questions.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
Mr. Potatohead,
First of all, I am happy to hear you are in CR. That is wonderful! In terms of your hemoglobin, my guess would be that it is related to the chemo you are receiving. Look up the side effects of your treatment. It is common for cancer drugs to reduce blood cells of all types. Don't forget, chemo is toxic to many cells, not just the cancer ones.
I hope you are tolerating the lower hemoglobin values. When mine dipped below 10, I definitely felt it, and my doc would give me an injection to help boost my red cells. Not all myeloma docs will do this, however. There is some controversy about using drugs that help to proliferate red blood cells because it could possibly stimulate the cancer cells, too. It's a risk/benefit thing.
Good luck, and I hope your treatment continues to work!
Ellen Harris
First of all, I am happy to hear you are in CR. That is wonderful! In terms of your hemoglobin, my guess would be that it is related to the chemo you are receiving. Look up the side effects of your treatment. It is common for cancer drugs to reduce blood cells of all types. Don't forget, chemo is toxic to many cells, not just the cancer ones.
I hope you are tolerating the lower hemoglobin values. When mine dipped below 10, I definitely felt it, and my doc would give me an injection to help boost my red cells. Not all myeloma docs will do this, however. There is some controversy about using drugs that help to proliferate red blood cells because it could possibly stimulate the cancer cells, too. It's a risk/benefit thing.
Good luck, and I hope your treatment continues to work!
Ellen Harris
Re: Aggressive vs. refractory, and hemoglobin when in CR
Thank you very much, Ellen.
I did read that Kyprolis can suppress hemoglobin, but my hemoglobin was actually at the same level that it is at now when I was getting much more Kyprolis, along with Cytoxan. Now that I am only getting the smaller maintenance dose of Kyprolis, I would have thought that my hemoglobin would have started to reach higher levels, which it hasn't.
Perhaps it will take longer.
I would hate to think that my CR begins and ends with lower kappa chain numbers, without feeling any better, but that is the way it has gone for me so far. I still suffer from tremendous fatigue and constant, intense bone pain. It is not a good quality of life. Not yet, anyway,
I did read that Kyprolis can suppress hemoglobin, but my hemoglobin was actually at the same level that it is at now when I was getting much more Kyprolis, along with Cytoxan. Now that I am only getting the smaller maintenance dose of Kyprolis, I would have thought that my hemoglobin would have started to reach higher levels, which it hasn't.
Perhaps it will take longer.
I would hate to think that my CR begins and ends with lower kappa chain numbers, without feeling any better, but that is the way it has gone for me so far. I still suffer from tremendous fatigue and constant, intense bone pain. It is not a good quality of life. Not yet, anyway,
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
Good morning Mr. PH:
I am sorry for your continuing back pain, and I hope it gets better at some point along the way. Regarding the term "aggressive" disease, I agree that the term is used all the time, but I do not think its one of the "officially" defined terms. There are a couple of references that define certain terms such as risk level, PFS criteria, relapse criteria, diagnostic criteria, etc.. Some of these orgs and reference documents are the International Myeloma Working Group publications, the Mayo clinic proceedings for multiple myeloma, and in the states, the NCCN guidelines, and others. I do not think that the terms "aggressive" has a definition, and I think doctors use it differently amongst themselves. One doctor actually used that term for my wife due to the fact she has the t(4,14) translocation, though she has responded well so far with minimal bad effects from the multiple myeloma, but hearing that her disease was "aggressive" or potentially aggressive was not comfortable.
I think there is another term that is used in a similar way. I have heard doctors say something (on a basic English level, a bit inane) to the effect that "we all know that responders respond, and non-responders don't". We know that at this stage that for patients that can tolerate VRD, that the % who get PR or better is something like 85%, and early signals for KRD is well above 90%. Previous regimens have their own data posted, but it seems that for most patients, that they either will respond to almost anything, but also that if they don't respond, its difficult to get a good response with anything. Your case, in that regard is very interesting, in that the first choice approach did not work at all, but the doctors were able to come up with a second line approach that got you to CR. Very interesting, and very fortunate, and I am happy for your response (but not your bone pain, of course). Having said that, I think the common sense meaning of the term "aggressive" in multiple myeloma is whether there is any prognostic risk factor that puts you in (or potentially) the bad side of the curves. Obviously, since you are in CR, if you stay there a long time, then you did not have "aggressive" disease. Your initial non-response would be what I would think the doctor was thinking about. Likewise, for my wife, the doctor I think was thinking about the t(4,14) when referring to the term. In both cases, I hope the term turns out to be inaccurate. (I think it was an Englishman that asked, "What's in a name", anyway).
Regarding your hemoglobin, I think that you are right in that you are at a level that is at the borderline of being unacceptably low, but you are probably OK right now. Have you had your iron levels (ferratin) checked out? If low, our experience is that prescription strength iron supplements, at a dosage somewhat higher than can be gotten over the counter, do seem to help a little bit. That would help to avoid the iron injections, or the treatment that Ellen was referring to. Good luck to you. Regards,
I am sorry for your continuing back pain, and I hope it gets better at some point along the way. Regarding the term "aggressive" disease, I agree that the term is used all the time, but I do not think its one of the "officially" defined terms. There are a couple of references that define certain terms such as risk level, PFS criteria, relapse criteria, diagnostic criteria, etc.. Some of these orgs and reference documents are the International Myeloma Working Group publications, the Mayo clinic proceedings for multiple myeloma, and in the states, the NCCN guidelines, and others. I do not think that the terms "aggressive" has a definition, and I think doctors use it differently amongst themselves. One doctor actually used that term for my wife due to the fact she has the t(4,14) translocation, though she has responded well so far with minimal bad effects from the multiple myeloma, but hearing that her disease was "aggressive" or potentially aggressive was not comfortable.
I think there is another term that is used in a similar way. I have heard doctors say something (on a basic English level, a bit inane) to the effect that "we all know that responders respond, and non-responders don't". We know that at this stage that for patients that can tolerate VRD, that the % who get PR or better is something like 85%, and early signals for KRD is well above 90%. Previous regimens have their own data posted, but it seems that for most patients, that they either will respond to almost anything, but also that if they don't respond, its difficult to get a good response with anything. Your case, in that regard is very interesting, in that the first choice approach did not work at all, but the doctors were able to come up with a second line approach that got you to CR. Very interesting, and very fortunate, and I am happy for your response (but not your bone pain, of course). Having said that, I think the common sense meaning of the term "aggressive" in multiple myeloma is whether there is any prognostic risk factor that puts you in (or potentially) the bad side of the curves. Obviously, since you are in CR, if you stay there a long time, then you did not have "aggressive" disease. Your initial non-response would be what I would think the doctor was thinking about. Likewise, for my wife, the doctor I think was thinking about the t(4,14) when referring to the term. In both cases, I hope the term turns out to be inaccurate. (I think it was an Englishman that asked, "What's in a name", anyway).
Regarding your hemoglobin, I think that you are right in that you are at a level that is at the borderline of being unacceptably low, but you are probably OK right now. Have you had your iron levels (ferratin) checked out? If low, our experience is that prescription strength iron supplements, at a dosage somewhat higher than can be gotten over the counter, do seem to help a little bit. That would help to avoid the iron injections, or the treatment that Ellen was referring to. Good luck to you. Regards,
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JPC - Name: JPC
Re: Aggressive vs. refractory, and hemoglobin when in CR
Hi JPC,
Thank you very much for another one of your characteristically helpful and informative posts.
I agree that my oncologist, in telling me that I had an aggressive form of myeloma, was referring simply to my weak and short-lived response to Revlimid, as well as my total lack of response to Velcade. It does seem that whether one has "aggressive" myeloma appears to depend on one's response to treatment, rather than which genetic markers one has of the types discussed.
My labs currently don't track ferritin levels, but I shall look into that next.
Thanks again.
Thank you very much for another one of your characteristically helpful and informative posts.
I agree that my oncologist, in telling me that I had an aggressive form of myeloma, was referring simply to my weak and short-lived response to Revlimid, as well as my total lack of response to Velcade. It does seem that whether one has "aggressive" myeloma appears to depend on one's response to treatment, rather than which genetic markers one has of the types discussed.
My labs currently don't track ferritin levels, but I shall look into that next.
Thanks again.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
Regarding the hemoglobin question, this is something that I discussed with my oncologist recently.
For quite some time, my hemoglobin has hovered in the 12's, just below the low end of normal, which is 13.0. I figured that once I went off treatment it would normalize, but it hasn't in the two months since I stopped chemo. My doctor said that it may never return to the normal range, which we will probably know six months after I have stopped treatment. His explanation was that the chemo and the transplant that I underwent can have a damaging effect on the bone marrow, which may not be reversible.
For quite some time, my hemoglobin has hovered in the 12's, just below the low end of normal, which is 13.0. I figured that once I went off treatment it would normalize, but it hasn't in the two months since I stopped chemo. My doctor said that it may never return to the normal range, which we will probably know six months after I have stopped treatment. His explanation was that the chemo and the transplant that I underwent can have a damaging effect on the bone marrow, which may not be reversible.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Aggressive vs. refractory, and hemoglobin when in CR
Dear Andrew,
I hope that your doctor is wrong and that you do recover to normal hemoglobin levels.
What JPC posted made sense to me -- I am on Kyprolis maintenance, and Kyprolis can suppress hemoglobin. But I am not sure what kind of bone marrow damage would have that effect in your case. If one is not on maintenance, and the myeloma has been suppressed by a transplant, I would think all blood counts would recover. Of course I am light years away from being an expert, but I have read over and over about CBC's recovering to normal levels after successful transplants. So I don't know why yours shouldn't -- and I fervently hope that they do!
Good luck!
I hope that your doctor is wrong and that you do recover to normal hemoglobin levels.
What JPC posted made sense to me -- I am on Kyprolis maintenance, and Kyprolis can suppress hemoglobin. But I am not sure what kind of bone marrow damage would have that effect in your case. If one is not on maintenance, and the myeloma has been suppressed by a transplant, I would think all blood counts would recover. Of course I am light years away from being an expert, but I have read over and over about CBC's recovering to normal levels after successful transplants. So I don't know why yours shouldn't -- and I fervently hope that they do!
Good luck!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
I have found another factor that can explain low hemoglobin levels despite being in CR as a result of successful multiple myeloma treatment.
If one has kidney damage, as I do, which in my case is caused by my kappa light chain myeloma, one's kidneys may fail to produce enough erythropoietin (EPO), a chemical essential to the production of red blood cells.
As Ellen mentioned in her post, there are medications that stimulate EPO production. They are called erythropoiesis stimulating agents (ESAs). However, they do have some serious side effects (one of which, as Ellen mentioned, is the possible stimulation of the growth of certain cancers) as well as significant contraindications.
I do think that my kidney damage, though not extensive, is probably part of the explanation for my continuing low hemoglobin levels.
If one has kidney damage, as I do, which in my case is caused by my kappa light chain myeloma, one's kidneys may fail to produce enough erythropoietin (EPO), a chemical essential to the production of red blood cells.
As Ellen mentioned in her post, there are medications that stimulate EPO production. They are called erythropoiesis stimulating agents (ESAs). However, they do have some serious side effects (one of which, as Ellen mentioned, is the possible stimulation of the growth of certain cancers) as well as significant contraindications.
I do think that my kidney damage, though not extensive, is probably part of the explanation for my continuing low hemoglobin levels.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
Good catch, Mr. Potatohead!
I have IgA kappa light chain, as well. My hemoglobin / RBC / hematocrit are usually borderline normal at this point. Hemoglobin is actually a little better than borderline, but the RBC's seem always to be a little bit low. I also have mild kidney damage (creatinine, 1 - 1.2). But, I am a small woman, so my oncologist says it should really be below 1. Perhaps this is the explanation for my values, as well.
The main thing is how you feel. Do you feel weak and/or tired due to the lower hemoglobin? If you I do, definitely discuss it with your doctor. During induction, when my hemoglobin went below 10 on a few occasions, I did receive the EPO injection, and it definitely helped.
Hoping you feel better soon.
I have IgA kappa light chain, as well. My hemoglobin / RBC / hematocrit are usually borderline normal at this point. Hemoglobin is actually a little better than borderline, but the RBC's seem always to be a little bit low. I also have mild kidney damage (creatinine, 1 - 1.2). But, I am a small woman, so my oncologist says it should really be below 1. Perhaps this is the explanation for my values, as well.
The main thing is how you feel. Do you feel weak and/or tired due to the lower hemoglobin? If you I do, definitely discuss it with your doctor. During induction, when my hemoglobin went below 10 on a few occasions, I did receive the EPO injection, and it definitely helped.
Hoping you feel better soon.
Re: Aggressive vs. refractory, and hemoglobin when in CR
Hi Ellen,
My hemoglobin had been holding at about 10.8 g/dL, but has recently dipped to 9.8 g/dL, and I do feel quite tired. I do plan to talk to my oncologist about an EPO shot.
Thanks for the great info.
My hemoglobin had been holding at about 10.8 g/dL, but has recently dipped to 9.8 g/dL, and I do feel quite tired. I do plan to talk to my oncologist about an EPO shot.
Thanks for the great info.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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