Hello eveyone,
I have a question regarding light chain multiple myeloma in people who have undergone a transplant, achieving a stringent complete response.
Three months after my autologous transplant last April, a bone marrow biopsy, a urine protein electrophoresis, and an a serum free light chain test were all negative for any trace of myeloma cells (I have kappa light chain multiple myeloma).
In fact, the free light chain test reported that both my kappa and lambda values were "too low to be detected."
I was thrilled. Since my diagnosis a little over 2.5 years ago, I have had drug and chemo therapy with either short-lived responses or else no response, even to drugs like Revlimid (lenalidomide) and Velcade (bortezomib).
But my latest free light chain test now shows detectable values for both the kappa and lambda light chains, although they both are low enough to fall short of being in the normal range.
Naturally, I am now wondering if this is the beginning of a relapse.
But I have read that even people without multiple myeloma throw off free light chains; that's why there are "normal" ranges for these proteins.
So I'm wondering how common it is after an autologous stem cell transplant to have undetectable levels of free light chains, followed by increases, but increases that fall short of putting one above the normal ranges.
Perhaps the melphalan used in the transplant wiped out a lot of normal plasma cells along with the malignant ones, and so as the normal cells increase, including those that throw off free light chains, the free light chain test will show increases.
Does that make sense?
Thanks. I'd hate to think that after only three months post-transplant, I am getting the same disappointing results I got from drug / chemo therapy!
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9 posts
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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: Free light chains no longer undetectable post transplant
Mr. P.
I didn't have a stem cell transplant but I was on the Revlimid, Velcade, and dexamethasone regimen for about 4 months last year ending in December (when my foot neuropathy got too bad). My IgA FLC were almost non-existent until the last two blood tests. The last one showed them just slightly above normal (everything else was normal). I just visited my oncologist this morning, and he wanted to start me on some Revlimid. However, I'm going to see my myeloma specialist in two weeks, and so we decided to wait until we hear from him.
I was surprised a bit by him wanting to start treatment because my FLC were 22x higher when we initially started treatment. He indicated that it's probably best to get on top of it before it becomes a bigger issue. Like you, I'm in no hurry to restart any treatment. Hoping for the best from my myeloma specialist.
I didn't have a stem cell transplant but I was on the Revlimid, Velcade, and dexamethasone regimen for about 4 months last year ending in December (when my foot neuropathy got too bad). My IgA FLC were almost non-existent until the last two blood tests. The last one showed them just slightly above normal (everything else was normal). I just visited my oncologist this morning, and he wanted to start me on some Revlimid. However, I'm going to see my myeloma specialist in two weeks, and so we decided to wait until we hear from him.
I was surprised a bit by him wanting to start treatment because my FLC were 22x higher when we initially started treatment. He indicated that it's probably best to get on top of it before it becomes a bigger issue. Like you, I'm in no hurry to restart any treatment. Hoping for the best from my myeloma specialist.
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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: Free light chains no longer undetectable post transplant
MrPotatohead,
Anything of course is possible, but I would not get too worried about one test. A series of tests over time will answer your questions. Many times there is maintenance that follows a transplant, Have they put you on anything? It sounds like you may have been refractory or resistant to Revlimid. However, often a transplant resets your immune system and plasma cells, so it may work now.
I had/have light chain multiple myeloma, but did not go the transplant route. Unlike you, I had a very good response to VRD and remained in a remissive state for over 6 years. I slowly relapsed and when my kappa free light chain level went over 100, my oncologist put me back on VRD (was always under some form of treatment but at a much reduced level of just VD once every 2 weeks).
I'm now on full VRD, but the dex is only 20 mg (lower than 40, but still gets me with the side effects). As you know, this is a very heterogeneous form of cancer. My FISH results were very unremarkable too.
I am standard risk and have responded to the VRD so far. I restarted it in January, my numbers are not yet back to normal, but are trending in the right direction as the kappa free light chain level is now in the 40s. Since my original diagnosis, I have also developed a small M spike of 0.2 that has been constant the last 3 years. I am now about 8.5 years into this journey.
Good luck and keep us informed.
Anything of course is possible, but I would not get too worried about one test. A series of tests over time will answer your questions. Many times there is maintenance that follows a transplant, Have they put you on anything? It sounds like you may have been refractory or resistant to Revlimid. However, often a transplant resets your immune system and plasma cells, so it may work now.
I had/have light chain multiple myeloma, but did not go the transplant route. Unlike you, I had a very good response to VRD and remained in a remissive state for over 6 years. I slowly relapsed and when my kappa free light chain level went over 100, my oncologist put me back on VRD (was always under some form of treatment but at a much reduced level of just VD once every 2 weeks).
I'm now on full VRD, but the dex is only 20 mg (lower than 40, but still gets me with the side effects). As you know, this is a very heterogeneous form of cancer. My FISH results were very unremarkable too.
I am standard risk and have responded to the VRD so far. I restarted it in January, my numbers are not yet back to normal, but are trending in the right direction as the kappa free light chain level is now in the 40s. Since my original diagnosis, I have also developed a small M spike of 0.2 that has been constant the last 3 years. I am now about 8.5 years into this journey.
Good luck and keep us informed.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Free light chains no longer undetectable post transplant
Hi Kebo,
First of all, thanks for sharing your experience.
You are right. I am in no hurry to increase the intensity of my treatment. On the other hand, if the increase in free light chains signals the beginning of a relapse, I would want to jump all over it.
Sounds like you are being prudent. Besides, waiting only two weeks to allow your myeloma specialist to weigh in does not sound like a high-risk strategy to me. I would probably do the same thing.
What bothers me is that in the past my oncologist wanted me to wait until the increase in my kappa free light chain level reached a point above the range of values considered "normal." Otherwise, according to him, we may be overreacting to what might be a normal fluctuation in free light chain levels – something that happens after an stem cell transplant while the immune system is recovering.
My discomfort with this approach stems from my intuition that normal fluctuations would likely include both increases and decreases in free light chain levels, rather than a steady march upward. That's why I asked how whether it is unusual to see undetectable free light chain levels after a successful transplant, followed by an increase in free light chain levels afterwards. (My free light chain levels, along with other myeloma markers, are being tested every two weeks while I take Kyprolis and dex for maintenance).
Thank you again for sharing, and good luck to you!
Hi Ron,
Thanks for sharing your thoughts. I always get something out of reading your posts. I also want to congratulate you on over eight years of surviving myeloma without a transplant! In my case, I would typically respond to treatment with novel agents (except for Velcade), but the response (as in the case of Revlimid) would typically be short-lived.
That in fact is why I am being classified as having an "aggressive" case – the lack of a sustained response to drug therapy. My FISH results put me in the standard to intermediate risk category.
My oncologist is following Mayo's mSMART recommendations for maintenance in aggressive cases following a stem cell transplant: Kyprolis and dex (an infusion on two consecutive days, every other week).
Yes, I agree that it would be a mistake to assume that the increase I have just seen in my free light chains heralds a relapse. But I am of the anxious persuasion, and wanted to put my experience into perspective, to gauge whether the recent increases are unusual (based on my experiences during various induction regimens, I was not expecting such a great transplant outcome).
My oncologist is on vacation for a while, so I contacted my transplant doctor, who basically made the argument you presented. Of course I hope that you are right, and this one uptick may just be an outlier. So far, for me, that has not been the case. During induction, one uptick was followed by another, and then another, etc. Perhaps this time will be different. I hope so!
Thanks again, and continued good luck with your great results so far.
First of all, thanks for sharing your experience.
You are right. I am in no hurry to increase the intensity of my treatment. On the other hand, if the increase in free light chains signals the beginning of a relapse, I would want to jump all over it.
Sounds like you are being prudent. Besides, waiting only two weeks to allow your myeloma specialist to weigh in does not sound like a high-risk strategy to me. I would probably do the same thing.
What bothers me is that in the past my oncologist wanted me to wait until the increase in my kappa free light chain level reached a point above the range of values considered "normal." Otherwise, according to him, we may be overreacting to what might be a normal fluctuation in free light chain levels – something that happens after an stem cell transplant while the immune system is recovering.
My discomfort with this approach stems from my intuition that normal fluctuations would likely include both increases and decreases in free light chain levels, rather than a steady march upward. That's why I asked how whether it is unusual to see undetectable free light chain levels after a successful transplant, followed by an increase in free light chain levels afterwards. (My free light chain levels, along with other myeloma markers, are being tested every two weeks while I take Kyprolis and dex for maintenance).
Thank you again for sharing, and good luck to you!
Hi Ron,
Thanks for sharing your thoughts. I always get something out of reading your posts. I also want to congratulate you on over eight years of surviving myeloma without a transplant! In my case, I would typically respond to treatment with novel agents (except for Velcade), but the response (as in the case of Revlimid) would typically be short-lived.
That in fact is why I am being classified as having an "aggressive" case – the lack of a sustained response to drug therapy. My FISH results put me in the standard to intermediate risk category.
My oncologist is following Mayo's mSMART recommendations for maintenance in aggressive cases following a stem cell transplant: Kyprolis and dex (an infusion on two consecutive days, every other week).
Yes, I agree that it would be a mistake to assume that the increase I have just seen in my free light chains heralds a relapse. But I am of the anxious persuasion, and wanted to put my experience into perspective, to gauge whether the recent increases are unusual (based on my experiences during various induction regimens, I was not expecting such a great transplant outcome).
My oncologist is on vacation for a while, so I contacted my transplant doctor, who basically made the argument you presented. Of course I hope that you are right, and this one uptick may just be an outlier. So far, for me, that has not been the case. During induction, one uptick was followed by another, and then another, etc. Perhaps this time will be different. I hope so!
Thanks again, and continued good luck with your great results so far.
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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: Free light chains no longer undetectable post transplant
Hello MrPotatohead,
I have no experience with autologous stem cell transplant (ASCT), either.
However, I have read many personal accounts of the myeloma patients that are posted on the Myeloma Beacon. Doesn't it take a few weeks, if not months, for the transplanted stem cells to populate all the ingredients/components of the bone marrow, like the WBC's, IgG, IgA, etc.? Could this be the reason your "free light chain test reported that both my kappa and lambda values were too low to be detected," even after three months after the transplant? I understand that we do need all the immunoglobulins to protect us against many infections. As you wrote, your Immune system is "recovering" and:
"Perhaps the melphalan used in the transplant wiped out a lot of normal plasma cells along with the malignant ones, and so as the normal cells increase, including those that throw off free light chains, the free light chain test will show increases." I really think that is the case.
You are fully justified to be concerned about the kappa and lambda FLClevels, particularly after your experience in the recent past, when the kappa rises a bit it can soon rise rapidly. I am worried about the same (a sudden 20% rise in kappa and 30% rise in my K/L) in my case. However, the recent rise in both your kappa and lambda levels may be completely healthy and the sign that your healthy stem cells are multiplying, a bit slowly though. And that may be because you have already started the Kyprolis-dex maintenance. That regimen may be suppressing both the light chains and it is taking a bit longer for them to reach the "normal" levels. I am sure that your K/L ratio is in the normal range and that may be an indicator of any monoclonal activity in the regenerated bone marrow.
I am watching my kappa and K/L keenly and I think I may have to follow the same path that Ron did; go on an "induction phase" like VRD regimen for a few months (or till my kappa and K/L come down to 'normal') when my kappa reaches about 100.
Your posts are very helpful for us, for me, in particular. Please let us know how things progress. All the best.
I have no experience with autologous stem cell transplant (ASCT), either.
However, I have read many personal accounts of the myeloma patients that are posted on the Myeloma Beacon. Doesn't it take a few weeks, if not months, for the transplanted stem cells to populate all the ingredients/components of the bone marrow, like the WBC's, IgG, IgA, etc.? Could this be the reason your "free light chain test reported that both my kappa and lambda values were too low to be detected," even after three months after the transplant? I understand that we do need all the immunoglobulins to protect us against many infections. As you wrote, your Immune system is "recovering" and:
"Perhaps the melphalan used in the transplant wiped out a lot of normal plasma cells along with the malignant ones, and so as the normal cells increase, including those that throw off free light chains, the free light chain test will show increases." I really think that is the case.
You are fully justified to be concerned about the kappa and lambda FLClevels, particularly after your experience in the recent past, when the kappa rises a bit it can soon rise rapidly. I am worried about the same (a sudden 20% rise in kappa and 30% rise in my K/L) in my case. However, the recent rise in both your kappa and lambda levels may be completely healthy and the sign that your healthy stem cells are multiplying, a bit slowly though. And that may be because you have already started the Kyprolis-dex maintenance. That regimen may be suppressing both the light chains and it is taking a bit longer for them to reach the "normal" levels. I am sure that your K/L ratio is in the normal range and that may be an indicator of any monoclonal activity in the regenerated bone marrow.
I am watching my kappa and K/L keenly and I think I may have to follow the same path that Ron did; go on an "induction phase" like VRD regimen for a few months (or till my kappa and K/L come down to 'normal') when my kappa reaches about 100.
Your posts are very helpful for us, for me, in particular. Please let us know how things progress. All the best.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Free light chains no longer undetectable post transplant
Thank you very much, K_Shash.
I think (and hope) that the recovering immune system – specifically, an increase in normal plasma cells – is indeed the reason for the uptick in my free light chains. They are indeed within the normal range, as is their ratio.
I was told by my transplant doctor that a complete recovery of the immune system can take up to one year, and the time actually varies widely across autologous stem cell transplant (ASCT) patients.
I wish you the best of luck in bringing your free light chains down, whether that happens spontaneously or through treatment.
I appreciate your kind words and will indeed post an update within the next week or so.
I think (and hope) that the recovering immune system – specifically, an increase in normal plasma cells – is indeed the reason for the uptick in my free light chains. They are indeed within the normal range, as is their ratio.
I was told by my transplant doctor that a complete recovery of the immune system can take up to one year, and the time actually varies widely across autologous stem cell transplant (ASCT) patients.
I wish you the best of luck in bringing your free light chains down, whether that happens spontaneously or through treatment.
I appreciate your kind words and will indeed post an update within the next week or so.
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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: Free light chains no longer undetectable post transplant
Hello MrPotatohead,
All the best with the general recovery from your transplant and I hope you continue with the progress you are making after the transplant in keeping your light chains and the K/L ratio, both in the normal range. That is quite a major procedure you are recovering from.
I waited till I got my latest blood test results to report my progress. My kappa and K/L came back down to the late July levels (from 55.4 in late August to the latest 46.06). The K/L actually dropped from 2.25 to 1.57! I will likely report this experience in a new topic, directly related to the Revlimid malabsorption caused by the cholestyaramine.
Upon the advice of the oncology pharmacists and even some doctors. I was keeping about 4 to 6 hour interval between the Revlimid and the cholestyramine during August. My oncologist/hematologist told me to increase these intervals to 12 hours, before AND after the Revlimid. That seems to have made all the difference. I kept the longer intervals between the Revlimid and the cholestyramine from early September and it seems to have made an immediate impact on my kappa and K/L.
I have had a great success with the cholestyramine in controlling my diarrhea. It really was getting worse with every 4-week cycle of the Revlimid. The constant diarrhea was causing bleeding and pain. I just started trying out Imodium only after the recent blood test. However, Imodium seems to be difficult to use as a preventive medicine for chronic diarrhea.
For now, I am just happy that my blood test results are back in the 42 +/- 10% range for kappa and in the "Normal" range for the K/L. These parameters have been stable for almost 18 months, except for the spike last month, which I can attribute to cCholestyramine caused malabsorption of Revlimid.
Unfortunately, this also shows that I really need Revlimid to 'manage' my myeloma and I cannot take any "Revlimid holiday".
All the best with the general recovery from your transplant and I hope you continue with the progress you are making after the transplant in keeping your light chains and the K/L ratio, both in the normal range. That is quite a major procedure you are recovering from.
I waited till I got my latest blood test results to report my progress. My kappa and K/L came back down to the late July levels (from 55.4 in late August to the latest 46.06). The K/L actually dropped from 2.25 to 1.57! I will likely report this experience in a new topic, directly related to the Revlimid malabsorption caused by the cholestyaramine.
Upon the advice of the oncology pharmacists and even some doctors. I was keeping about 4 to 6 hour interval between the Revlimid and the cholestyramine during August. My oncologist/hematologist told me to increase these intervals to 12 hours, before AND after the Revlimid. That seems to have made all the difference. I kept the longer intervals between the Revlimid and the cholestyramine from early September and it seems to have made an immediate impact on my kappa and K/L.
I have had a great success with the cholestyramine in controlling my diarrhea. It really was getting worse with every 4-week cycle of the Revlimid. The constant diarrhea was causing bleeding and pain. I just started trying out Imodium only after the recent blood test. However, Imodium seems to be difficult to use as a preventive medicine for chronic diarrhea.
For now, I am just happy that my blood test results are back in the 42 +/- 10% range for kappa and in the "Normal" range for the K/L. These parameters have been stable for almost 18 months, except for the spike last month, which I can attribute to cCholestyramine caused malabsorption of Revlimid.
Unfortunately, this also shows that I really need Revlimid to 'manage' my myeloma and I cannot take any "Revlimid holiday".
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Free light chains no longer undetectable post transplant
Hello again, everyone.
I just got my latest serum free light chain results back (as of 9/25). My kappa and lambda values did tick back down: When I previously wrote, worried about an uptick, kappa was at 0.013 on 7/24, and had climbed to 0.14 on 9/7. My K/L ratio had also climbed from 0.04 on 7/24 to 1.04 on 9/7.
And now these values are back down: kappa is at 0.028, and the ratio is at 0.25 both as of 9/24.
So Ron, K_Shash, and Kebo, thanks again for your input. Ron & K_Shash, you were right about holding the fort a while before jumping to conclusions based on one uptick. I guess these things can indeed bounce around a bit after an ASCT.
I guess I am still a victim of the “Sword of Damocles” syndrome, ever watchful that things are about to take a worst-case course. It’s really hard for me to resist that tendency!
K_Shash, I am very glad to hear about the significant drop in your kappa and K/L values. I had not known that a cholesterol drug could cause malabsorption of Revlimid.
I just got my latest serum free light chain results back (as of 9/25). My kappa and lambda values did tick back down: When I previously wrote, worried about an uptick, kappa was at 0.013 on 7/24, and had climbed to 0.14 on 9/7. My K/L ratio had also climbed from 0.04 on 7/24 to 1.04 on 9/7.
And now these values are back down: kappa is at 0.028, and the ratio is at 0.25 both as of 9/24.
So Ron, K_Shash, and Kebo, thanks again for your input. Ron & K_Shash, you were right about holding the fort a while before jumping to conclusions based on one uptick. I guess these things can indeed bounce around a bit after an ASCT.
I guess I am still a victim of the “Sword of Damocles” syndrome, ever watchful that things are about to take a worst-case course. It’s really hard for me to resist that tendency!
K_Shash, I am very glad to hear about the significant drop in your kappa and K/L values. I had not known that a cholesterol drug could cause malabsorption of Revlimid.
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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: Free light chains no longer undetectable post transplant
To add to what has been discussed in this thread concerning fluctuating free light chain levels (as disclosed by the serum free light chain test), I recently read an explanation that had occurred to me (and others) as I pondered a small increase in my free light chain numbers several months after a successful autologous stem cell transplant.
The point is this. Even healthy people have low levels of free light chains circulating in their blood (that’s why there are “normal” levels of both kappa and lambda free light chains).
The chemotherapyc agent most often used in an autologous transplant, melphalan, is toxic to normal B-type plasma cells, as well as to multiple myeloma cells. Hence, one would expect a steep decrease in free light chain levels following a successful transplant to stem partially from a reduction in normal plasma cells, in addition to a reduction in myeloma cells.
Consequently, as the effects of the melphalan wear off and the immune system begins to recover, there will be an increase in normal plasma cells, and hence one would expect an increase in free light chains levels generated by these normal cells.
So an uptick in free light chain levels after transplant does not necessarily signal the beginning of a relapse.
I believe there are other benign reasons behind fluctuations in one’s free light chain levels that have nothing to do with relapse.
Somehow, I must find a way not to see signs of a relapse everywhere I look!
The point is this. Even healthy people have low levels of free light chains circulating in their blood (that’s why there are “normal” levels of both kappa and lambda free light chains).
The chemotherapyc agent most often used in an autologous transplant, melphalan, is toxic to normal B-type plasma cells, as well as to multiple myeloma cells. Hence, one would expect a steep decrease in free light chain levels following a successful transplant to stem partially from a reduction in normal plasma cells, in addition to a reduction in myeloma cells.
Consequently, as the effects of the melphalan wear off and the immune system begins to recover, there will be an increase in normal plasma cells, and hence one would expect an increase in free light chains levels generated by these normal cells.
So an uptick in free light chain levels after transplant does not necessarily signal the beginning of a relapse.
I believe there are other benign reasons behind fluctuations in one’s free light chain levels that have nothing to do with relapse.
Somehow, I must find a way not to see signs of a relapse everywhere I look!
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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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