Just joined the forum. Was diagnosed with AL amyloidosis with smoldering myeloma February 2013. Underwent HDC/ASCT in April 2013. Achieved a complete hematologic response and my liver and kidneys damaged by the amyloids are showing good organ response, too. I'm currently half way through a year long consolidation therapy of Revlimid/dexamethasone.
I've spent a lot of time on the amyloidosis forums learning about that disease since that is what was active and causing problems. Now that the amyloidosis is under control and I understand it pretty well, I want to educate myself on smoldering myeloma.
My hematologist told me I'm in a "gray area" of smoldering myeloma. My plasma cells were 7% in my aspirate from my bone marrow biopsy but were 10% in the core sample which is the more accurate measure, according to my hematologist. I've watched a lot of videos from the ASH conference last year talking about criteria to determine smoldering myeloma and when to treat. Seems like there's not a great deal of consensus on those topics. I see a lot of criteria that smoldering myeloma is when the BMPCs are greater than 10%. I guess being at 10% is close enough for my hematologist to diagnose it.
I have questions about what to watch for that shows the smoldering myeloma is moving into full-blown myeloma. Would love to hear from others who know about that.
My life is pretty much back to normal now and I'm able to do everything I could before I got sick. Hoping that lasts for a very long time.
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koontzkg - Name: Kathy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2/2013
- Age at diagnosis: 51
Re: AL amyloidosis with smoldering myeloma
MGUS, smoldering and active myeloma exist along a continuum that we have defined as: MGUS <3g M-spike and <10% plasma cells; SMM >3g or >10% PCs; AMM [active multiple myeloma] any of the former with signs of end organ damage (CRAB- hyperCalcemia, Renal failure, Anemia, and Bone disease).
Primary AL also falls in the same family as the amyloid deposition is from the inappropriately formed antibodies being produced by the "myeloma" cells. Primary AL typically has a low level of bone marrow involvement with plasma cells (<10%) and as you know organ damage caused by the deposition of the amyloid in the different tissues of the body.
The treatments are overlapping save that in AL if cardiac function is adequate transplant is used as a primary form of therapy and should have a much longer duration of control than those with AMM.
About 20% of active myeloma patients also have concomitant amyloidosis.
You will be monitored closely the rest of your life and the symptoms of your AL are of primary concern. However, your doctor will continue to assess for potential myeloma- associated damage as well.
Good luck and keep everyone updated.
Primary AL also falls in the same family as the amyloid deposition is from the inappropriately formed antibodies being produced by the "myeloma" cells. Primary AL typically has a low level of bone marrow involvement with plasma cells (<10%) and as you know organ damage caused by the deposition of the amyloid in the different tissues of the body.
The treatments are overlapping save that in AL if cardiac function is adequate transplant is used as a primary form of therapy and should have a much longer duration of control than those with AMM.
About 20% of active myeloma patients also have concomitant amyloidosis.
You will be monitored closely the rest of your life and the symptoms of your AL are of primary concern. However, your doctor will continue to assess for potential myeloma- associated damage as well.
Good luck and keep everyone updated.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: AL amyloidosis with smoldering myeloma
Anyway, which test reports the m-spike?
The SPEP (Serum Protein Electrophoresis). May actually be called M-protein or paraprotein or monoclonal protein or something similar on your report.
The SPEP (Serum Protein Electrophoresis). May actually be called M-protein or paraprotein or monoclonal protein or something similar on your report.
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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 smoldering myeloma
Thanks, multibilly. Every one of the 10 SPEPs I've had said this--
MONOCLONAL PROTEIN, SERUM NONE DETECTED
IMMUNOFIXATION, SERUM No monoclonal protein present.
MONOCLONAL PROTEIN, SERUM NONE DETECTED
IMMUNOFIXATION, SERUM No monoclonal protein present.
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koontzkg - Name: Kathy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2/2013
- Age at diagnosis: 51
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