Hi,
I'm 43 and was diagnosed with multiple myeloma in April this year and have been on treatment since then with cyclophosphamide, dex and thalidomide.
After 6 rounds of chemo, my paraprotein (M-spike) levels have come down from 43 g/L (4.3 g/dL) to 19 g/L (1.9 g/dL), but my serum free light chains (S-lambda) has not really moved down. It's still very high, at 187, when it should be down to 26 and my doctor says not to worry, but I do
What does this signify?
I have just started on Velcade as well for the next two months to get my protein levels low enough to hopefully have a stem cell transplant.
Any advice would be much appreciated.
Thanks,
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: Paraprotein level dropping, but not free light chains
Hello Grant,
Sorry to hear that your lambda free light chains aren't responding the way that you'd like.
Can you give us a bit more history on what has happened with your light chain levels? What were they at diagnosis -- both your lambda and kappa levels -- and how have they moved?
Sorry to hear that your lambda free light chains aren't responding the way that you'd like.
Can you give us a bit more history on what has happened with your light chain levels? What were they at diagnosis -- both your lambda and kappa levels -- and how have they moved?
Re: Paraprotein level dropping, but not free light chains
Hi Ian,
Thanks for responding.
At diagnosis on 14 April 2014, my kappa was <3.15, my lambda was 185.25 and my kappa/lambda ratio was < 0.02. My paraprotein concentration (M-spike) was 45 g/l (4.5 g/dL).
After 4 months of cyclophosphamide, thalidomide and dexamethasone (CTD), my kappa was <3.30, my lambda was 190.50 and my kappa / lambda Ratio was <0.02 while paraprotein level had dropped to 23 g/l (2.3 g/dL).
After another 2 months of the same treatment, my kappa was unchanged at <3.30, lambda was 187.75 and the kappa / lambda ratio was <0.02 and my paraprotein level had come down to 19 g/l (1.9 g/dL).
I have now been put onto Velcade once a week for two months in the hope that my paraprotien levels will drop sufficiently for a stem cell transplant toward the end of the year.
Looking forward to hearing your thoughts.
Regards
Grant
Thanks for responding.
At diagnosis on 14 April 2014, my kappa was <3.15, my lambda was 185.25 and my kappa/lambda ratio was < 0.02. My paraprotein concentration (M-spike) was 45 g/l (4.5 g/dL).
After 4 months of cyclophosphamide, thalidomide and dexamethasone (CTD), my kappa was <3.30, my lambda was 190.50 and my kappa / lambda Ratio was <0.02 while paraprotein level had dropped to 23 g/l (2.3 g/dL).
After another 2 months of the same treatment, my kappa was unchanged at <3.30, lambda was 187.75 and the kappa / lambda ratio was <0.02 and my paraprotein level had come down to 19 g/l (1.9 g/dL).
I have now been put onto Velcade once a week for two months in the hope that my paraprotien levels will drop sufficiently for a stem cell transplant toward the end of the year.
Looking forward to hearing your thoughts.
Regards
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: Paraprotein level dropping, but not free light chains
Dear Grant,
You may have a subpopulation of your disease making free lambda light chains only (and no intact immunoglobulin M protein). This subpopulation may be less responsive to your initial treatment, although it has not progressed either. It may also represent a small proportion of your myeloma. As such, your response may be better than you think. It is encouraging that your M protein is dropping.
In your case, it will be important to monitor not just the M protein, but the serum free light chains as well (just as you are doing). A repeat bone marrow evaluation at some point may also help provide guidance and better determine disease status as you prepare to consider stem cell transplant.
Good luck!
Pete V.
You may have a subpopulation of your disease making free lambda light chains only (and no intact immunoglobulin M protein). This subpopulation may be less responsive to your initial treatment, although it has not progressed either. It may also represent a small proportion of your myeloma. As such, your response may be better than you think. It is encouraging that your M protein is dropping.
In your case, it will be important to monitor not just the M protein, but the serum free light chains as well (just as you are doing). A repeat bone marrow evaluation at some point may also help provide guidance and better determine disease status as you prepare to consider stem cell transplant.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Paraprotein level dropping, but not free light chains
Hi Pete,
So if i understand you correctly, there may be some myeloma cells making free lambda light chains (which may not have been responding to treatment), and others making M proteins (which have been responding), and the best way to see the overall picture is from a bone marrow biopsy which will give the overall view (of both types of myeloma) cells in the bone marrow?
So my tumor burden was estimated at +/- 60% at diagnosis, the majority being lambda-positive with a few kappa-positive cells. Hopefully, this will be significantly reduced when i have my next biopsy and perhaps the free light myeloma will respond to the new Velcade treatment?
Thanks,
Grant
So if i understand you correctly, there may be some myeloma cells making free lambda light chains (which may not have been responding to treatment), and others making M proteins (which have been responding), and the best way to see the overall picture is from a bone marrow biopsy which will give the overall view (of both types of myeloma) cells in the bone marrow?
So my tumor burden was estimated at +/- 60% at diagnosis, the majority being lambda-positive with a few kappa-positive cells. Hopefully, this will be significantly reduced when i have my next biopsy and perhaps the free light myeloma will respond to the new Velcade treatment?
Thanks,
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: Paraprotein level dropping, but not free light chains
Grant
Once again you've provided proof as to how confusing and complicated multiple myeloma is!
The question I have, one that you may want to run past your own doctor, is why were you placed on cyclophosphamide, dex and thalidomide, as opposed to Revlimid, Velcade, and dexamethasone?
I do understand that some doctors prefer your particular combo, but it is also my understanding that the RVD combo is more consensus these days. It is also my understanding that Revlimid (a thalidomide derivative) has fewer side effects than Revlimid (which has plenty enough to begin with!).
I'll be the first to admit that I may just be demonstrating my personal bias here, as the RVD combo was nothing short of miraculous for me, and I was literally on Death's doorstep when first placed on this combo (chromosome 17p deletion, kappa light chain, 12% healthy plasma cells).
Best of luck!
Daniel
Once again you've provided proof as to how confusing and complicated multiple myeloma is!
The question I have, one that you may want to run past your own doctor, is why were you placed on cyclophosphamide, dex and thalidomide, as opposed to Revlimid, Velcade, and dexamethasone?
I do understand that some doctors prefer your particular combo, but it is also my understanding that the RVD combo is more consensus these days. It is also my understanding that Revlimid (a thalidomide derivative) has fewer side effects than Revlimid (which has plenty enough to begin with!).
I'll be the first to admit that I may just be demonstrating my personal bias here, as the RVD combo was nothing short of miraculous for me, and I was literally on Death's doorstep when first placed on this combo (chromosome 17p deletion, kappa light chain, 12% healthy plasma cells).
Best of luck!
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Paraprotein level dropping, but not free light chains
Hi Daniel,
Although Velcade, Revlimid, and dexamethasone is a common induction therapy in the States, it is rather rare in other countries. I think that CTD, the regimen Grant was on first, is becoming less common in Europe. However, I think it is still common in many other parts of the world, not least because it can be a lot less expensive than regimens involving either Revlimid or Velcade.
Grant,
I think you've basically interpreted what Dr. Voorhees said correctly. He is wondering if perhaps some of your myeloma is made up of cells that produce mainly free light chains and no intact immunoglobulins, and they are not responding to treatment as quickly. So tracking your free light chains will tell you if that part of your disease is responding. Also, checking your bone marrow plasma cell percentage will give additional information about how well the disease, overall, has responded to treatment.
Please keep us updated on how things go with your treatment as well as any additional questions you may have.
Good luck!
Although Velcade, Revlimid, and dexamethasone is a common induction therapy in the States, it is rather rare in other countries. I think that CTD, the regimen Grant was on first, is becoming less common in Europe. However, I think it is still common in many other parts of the world, not least because it can be a lot less expensive than regimens involving either Revlimid or Velcade.
Grant,
I think you've basically interpreted what Dr. Voorhees said correctly. He is wondering if perhaps some of your myeloma is made up of cells that produce mainly free light chains and no intact immunoglobulins, and they are not responding to treatment as quickly. So tracking your free light chains will tell you if that part of your disease is responding. Also, checking your bone marrow plasma cell percentage will give additional information about how well the disease, overall, has responded to treatment.
Please keep us updated on how things go with your treatment as well as any additional questions you may have.
Good luck!
Re: Paraprotein level dropping, but not free light chains
Hi Daniel,
Firstly, great news about your treatment. It's really heartening to hear about someone responding so well to treatment and especially treatment that I haven't tried yet.
Yes, I think Ian is absolutely correct. CTD seems to be the main choice for induction therapy in South Africa and, from what I have read, also the UK, and I'm pretty sure it's based on cost. We have to get treatment plans approved by medical aid, and it seems the first line of treatment is the cheaper option and when that has been demonstrated to not work sufficiently, then they approve the more expensive regimens.
Hello Ian,
Thanks for your info that is very helpful.
Firstly, great news about your treatment. It's really heartening to hear about someone responding so well to treatment and especially treatment that I haven't tried yet.
Yes, I think Ian is absolutely correct. CTD seems to be the main choice for induction therapy in South Africa and, from what I have read, also the UK, and I'm pretty sure it's based on cost. We have to get treatment plans approved by medical aid, and it seems the first line of treatment is the cheaper option and when that has been demonstrated to not work sufficiently, then they approve the more expensive regimens.
Hello Ian,
Thanks for your info that is very helpful.
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
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