I have been told by my doctor at Mayo that I have smoldering myeloma. I have 40% plasma from my BMB. I also have AL amyloidosis. I was told at Sloan Kettering that I only have AL amyloidosis.
I have no M-spike, no protein in my urine, have no CRAB symptoms, and the amyloid is not in any major organs.
Can a person have 40% plasma and only have AL amyloidosis?
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Re: AL amyloidosis with, or without, smoldering myeloma?
Hey Babresin,
First off, I'm not a doc, so please confirm all this with your docs.
My understanding is that AL amyloidosis patients typically have plasma cell burdens on the order of 5-10%. But I have no idea if there are exceptions to this on the order of 40%.
Do you have access to the BMB test that the Mayo or MSK did? There are several tests that are done on the BMB biopsy samples to confirm the presence of multiple myeloma (microscopic examination of the shape of the plasma cells, staining tests of specific antigens on the surfaces of the plasma cells, etc).
Note that one can have multiple myeloma (including smoldering multiple myeloma) and not have an M-Spike in one's blood or urine. This is what is known as nonsecretory multiple myeloma.
First off, I'm not a doc, so please confirm all this with your docs.
My understanding is that AL amyloidosis patients typically have plasma cell burdens on the order of 5-10%. But I have no idea if there are exceptions to this on the order of 40%.
Do you have access to the BMB test that the Mayo or MSK did? There are several tests that are done on the BMB biopsy samples to confirm the presence of multiple myeloma (microscopic examination of the shape of the plasma cells, staining tests of specific antigens on the surfaces of the plasma cells, etc).
Note that one can have multiple myeloma (including smoldering multiple myeloma) and not have an M-Spike in one's blood or urine. This is what is known as nonsecretory multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: AL amyloidosis with, or without, smoldering myeloma?
This always confuses people, partially because medicine has confused things. To clarify, what organs have the amyloid? And I am sure you have abnormal free light chains (so lack of an m-spike is not relevant), as nearly all amyloidosis patients do.
Purely based on a bone marrow biopsy with >10% plasma cells and absence of CRAB symptoms, you could be called 'smoldering myeloma'. However, if someone with such a condition had free light chains produced by those plasma cells folding into amyloid (that then gets deposited in organs etc), then this is AL (or 'light chain') amyloidosis. SO, in your case, it is true that you have smoldering myeloma technically, but your condition as defined by current clinical impact is best called AL amyloidosis.
There are a few relevant implications of the 40% plasma cells in your case of amyloidosis. In cases with >10% plasma cells, many advocate for 'induction' treatment (e.g. Velcade-based therapy) before consideration of a melphalan-based stem cell transplant (as is typically done for myeloma). Whereas, with lower plasma cell burden, transplant is often considered upfront. ALSO, you would have a higher chance of progressing to symptomatic myeloma over time versus a patient with <10% plasma cells. But this is often not a meaningful consideration, as many amyloidosis patients have much on their hands, illness- and treatment-wise, early on, and concern for progressive myeloma years later is not given much attention.
In summary: They are both right. Conventionally, I refer to such patients as amyloidosis alone
(though take into account plasma cell burden).
Hope this clarifies. You have certainly seen doctors in excellent places.
Purely based on a bone marrow biopsy with >10% plasma cells and absence of CRAB symptoms, you could be called 'smoldering myeloma'. However, if someone with such a condition had free light chains produced by those plasma cells folding into amyloid (that then gets deposited in organs etc), then this is AL (or 'light chain') amyloidosis. SO, in your case, it is true that you have smoldering myeloma technically, but your condition as defined by current clinical impact is best called AL amyloidosis.
There are a few relevant implications of the 40% plasma cells in your case of amyloidosis. In cases with >10% plasma cells, many advocate for 'induction' treatment (e.g. Velcade-based therapy) before consideration of a melphalan-based stem cell transplant (as is typically done for myeloma). Whereas, with lower plasma cell burden, transplant is often considered upfront. ALSO, you would have a higher chance of progressing to symptomatic myeloma over time versus a patient with <10% plasma cells. But this is often not a meaningful consideration, as many amyloidosis patients have much on their hands, illness- and treatment-wise, early on, and concern for progressive myeloma years later is not given much attention.
In summary: They are both right. Conventionally, I refer to such patients as amyloidosis alone
(though take into account plasma cell burden).
Hope this clarifies. You have certainly seen doctors in excellent places.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: AL amyloidosis with, or without, smoldering myeloma?
After my second cycle of CyBorD (cyclophosphamide, Velcade, dexamethasone), I had blood work done. My free kappa went down to 73.81 mg/dl but my free lambda also went down to 0.06 mg/dl, causing my free light chain ratio to go through the roof 1226.83. Should I be concerned?
My AL amyloidosis is in my tongue. No major organs are impaired. All my other blood tests and urine tests came back normal.
I have 10 more weeks of CyBorD so I know I should not panic, but any number that is high looks scary. Seeing the doctor on Thursday, but peace of mind now would be nice.
My AL amyloidosis is in my tongue. No major organs are impaired. All my other blood tests and urine tests came back normal.
I have 10 more weeks of CyBorD so I know I should not panic, but any number that is high looks scary. Seeing the doctor on Thursday, but peace of mind now would be nice.
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babresin
Re: AL amyloidosis with, or without, smoldering myeloma?
You did not mention your original numbers, so it's hard to say, but the rise in the ratio was driven by the drop in the free lambda. At such low levels, it is hard for the machines to be very precise. I would not worry about the ratio in this setting. As you said, it is early and most do get satisfactory responses to the regimen you are currently on.
As you also said, best to let your doctor interpret everything in context.
As you also said, best to let your doctor interpret everything in context.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: AL amyloidosis with, or without, smoldering myeloma?
I'm new this forum but I have been diagnoses at Mayo with Stage 1 AL amyloidosis with smoldering myeloma. I'm told this is very common. I did have protein in my urine in large amounts. My treatments begin on Monday.
Are you having any treatments?
Beckyo
Are you having any treatments?
Beckyo
Re: AL amyloidosis with, or without, smoldering myeloma?
I also have amyloidosis (in the kidneys), and had 40% plasma cells on my first bone marrow biopsy (BMB). One doc said I had smoldering multiple myeloma and another said I didn't and another said it was all "semantics, and didn't matter because the treatment is the same." The latest guidelines suggest I have only amyloidosis, but this whole thing kind of bugs me.
The bottom line is that I'm in remission, so I'm not spending a lot of time worrying about it. I'm living life to the fullest. I wish you the best of luck.
The bottom line is that I'm in remission, so I'm not spending a lot of time worrying about it. I'm living life to the fullest. I wish you the best of luck.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: AL amyloidosis with, or without, smoldering myeloma?
Nice post, Kim.
I'm not sure what my amyloid numbers were, but since I was asymptomatic, I'm assuming my numbers must have been on the lower end.
I was diagnosed with multiple myeloma and primary amyloidosis 5 1/2 years ago. The two hematologists who are caring for me told me to ignore the amyloidosis and just treat the myeloma.
I'm now 3 plus years post tandem transplant and am doing fine. I have a detectable M-spike, but it has been low and stable since the transplants.
The only difference in treatment was that they did more tests on my organs to make sure there were no issues that would interfere with treatment.
Not sure if my post was pertinent, but thought I'd hammer it out anyway!!
I'm not sure what my amyloid numbers were, but since I was asymptomatic, I'm assuming my numbers must have been on the lower end.
I was diagnosed with multiple myeloma and primary amyloidosis 5 1/2 years ago. The two hematologists who are caring for me told me to ignore the amyloidosis and just treat the myeloma.
I'm now 3 plus years post tandem transplant and am doing fine. I have a detectable M-spike, but it has been low and stable since the transplants.
The only difference in treatment was that they did more tests on my organs to make sure there were no issues that would interfere with treatment.
Not sure if my post was pertinent, but thought I'd hammer it out anyway!!
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stann
8 posts
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