My husband, only 44 years old, had a tough time getting diagnosed. I think he had a solitary plasmacytoma and MGUS. The doctors never really gave a diagnosis.
He had a collapse of the C5 vertebra, for which he was operated. Biopsy confirmed a plasmacytoma. Myeloma protein was only 0.3, but PET showed multiple lytic spots. Bone marrow biopsy showed 5% plasma cells only.
He has already had 4 rounds of bortezomib (Velcade), dexamethasone, and lenalidomide (Revlimid). I wonder if they started too soon. Next they want us to go in for a stem cell transplant. I am not sure we should at this moment.
Any ideas? It seems treatment with us isn't customized. They are just following protocol, they say.
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Re: Solitary bone plasmacytoma & MGUS
HI nbijli,
Sorry to hear about your hubby's situation. I know this can be a confusing and soul-searching time as you deal with treatment decisions.
Are you working with a multiple myeloma specialist (not just an oncologist that occasionally deals with multiple myeloma)? If you let folks know which city you are in, folks on this forum can make recommendations as to where to find these specialists.
If your hubby had multiple lytic lesions and a collapsed vertebrae as result of the multiple myeloma, then it doesn't strike me that starting the treatment was premature.
Note that bone marrow biopsy readings can often be hit and miss since the disease isn't spread evenly throughout one's bones.
What were his most recent free light chain values (kappa and lambda) prior to treatment? That might provide another key clue as to the current state of his disease.
Also, when you say his myeloma protein was 0.3, what were the the units of measure?
Lastly, does he have any adverse cytogenetics (genetic mutations) that were surfaced on the bone marrow biopsy test?
The issue of whether to do a transplant or not is an often-debated subject on this forum. I'm sure some others can provide some links on these discussions. IMHO, and at a minimum, the doctor should at least be explaining his philosophy on transplants versus drug-only treatment rather than only giving you a transplant-only option.
Sorry to hear about your hubby's situation. I know this can be a confusing and soul-searching time as you deal with treatment decisions.
Are you working with a multiple myeloma specialist (not just an oncologist that occasionally deals with multiple myeloma)? If you let folks know which city you are in, folks on this forum can make recommendations as to where to find these specialists.
If your hubby had multiple lytic lesions and a collapsed vertebrae as result of the multiple myeloma, then it doesn't strike me that starting the treatment was premature.
Note that bone marrow biopsy readings can often be hit and miss since the disease isn't spread evenly throughout one's bones.
What were his most recent free light chain values (kappa and lambda) prior to treatment? That might provide another key clue as to the current state of his disease.
Also, when you say his myeloma protein was 0.3, what were the the units of measure?
Lastly, does he have any adverse cytogenetics (genetic mutations) that were surfaced on the bone marrow biopsy test?
The issue of whether to do a transplant or not is an often-debated subject on this forum. I'm sure some others can provide some links on these discussions. IMHO, and at a minimum, the doctor should at least be explaining his philosophy on transplants versus drug-only treatment rather than only giving you a transplant-only option.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Solitary bone plasmacytoma & MGUS
Thanks for your input. We are based in India. We are seeing a renowned myeloma specialist. However, treatment here doesn't seem to be customized. It seems there are fixed protocols and we are really scared as no one really talks here unless it's a private institution.
My main concern is whether we should go for the transplant. Protocol says yes. There is also no facility for stem cell preservation, so this might be our first and last stem cell transplant.
Also they don't do cytogenetics here.
My main concern is whether we should go for the transplant. Protocol says yes. There is also no facility for stem cell preservation, so this might be our first and last stem cell transplant.
Also they don't do cytogenetics here.
Re: Solitary bone plasmacytoma & MGUS
Hi Nbjili, If your husband had a collapse of a vertebra and also lytic lesions showed on the PET scan, then that would be full fledged myeloma, I think.
How is he doing after the 'induction' chemo of RVD (Revlimid, Velcade, Dex)? That is, what are the monoclonal counts (it may be called paraprotein) and the Serum Free Lite chain ratio? That would be an indication of whether or not the treatments are working well.
From my limited knowledge as a patient, it seems that the closer one is to a remission before the stem cell transplant, the better that treatment will work. I did have a transplant over 5 years ago and I think it helped me to stay in a long remission. I still have stem cells saved, frozen in liquid nitrogen, but at the time at our cancer ctr., they did say they would save them for 5 years. Some people on this forum have had double transplants, quite close together in time. Many others have declined to have a transplant, or are not eligible to take one, due to other health reasons.
My cytogenetics did not show any 'high risk' features at the time, but cytogenetics has advanced, and the field of myeloma research is advancing all the time.
Hope that helps.... There isn't really one answer that fits all cases of myeloma though.
How is he doing after the 'induction' chemo of RVD (Revlimid, Velcade, Dex)? That is, what are the monoclonal counts (it may be called paraprotein) and the Serum Free Lite chain ratio? That would be an indication of whether or not the treatments are working well.
From my limited knowledge as a patient, it seems that the closer one is to a remission before the stem cell transplant, the better that treatment will work. I did have a transplant over 5 years ago and I think it helped me to stay in a long remission. I still have stem cells saved, frozen in liquid nitrogen, but at the time at our cancer ctr., they did say they would save them for 5 years. Some people on this forum have had double transplants, quite close together in time. Many others have declined to have a transplant, or are not eligible to take one, due to other health reasons.
My cytogenetics did not show any 'high risk' features at the time, but cytogenetics has advanced, and the field of myeloma research is advancing all the time.
Hope that helps.... There isn't really one answer that fits all cases of myeloma though.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Solitary bone plasmacytoma & MGUS
You've got some good comments already. You might want to also read through this thread and start to look at Cheryl's and my suggestions on where to find some discussions on whether to perform, delay or forego a transplant. There's no easy answer to this question and your husband really needs to decide for himself what is the right choice.
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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