Hello! My story is two previous solitary plasmacytoma of bone. (Pathological fracture left femur dec 2009, plasmacytoma L1 june 2011). Both plasmacytomas treated with surgery and radiation. Both treatment periods ended in complete remission with no detectable m-spike. Bone marrow biopsies clean and no chromosomal abnormalities.
In sep 2012 my m-spike started to rise. (2g/l). Three months later 3g/l, the latest SPEP showed 11g/l. Late september. During this time I've experienced no symptoms. My latest bone marrow biopsy is clean and show no signs of multiple myeloma.
In dec 2012 full body scan MRI. Doctors found possible tumours behind my left eye, in my left shoulder and in my left gluteus maximus. Contrast CT and MRI followed. Lesion in left shoulder is gone! The lesion behind left eye is shrinking. The lesion i my left gluteus maximus were not followed up.
Today I had a survey of my abdomen due to possible biliary calculus. (Ultra sound). They did find numerous gallstones. They also found a well defined suspected tumour mass 8x9 cm. It's located between the liver and the stomach and pancreas. It doesen't seem to infiltrate surrounding tissues. Now scheduled for new MRI.
I have no symptoms other than labs showing the m-spike. This disease seems to hit me in an unusual and peculiar way. Any thoughts on possible treatments available?
Best regards from Mattias in Sweden
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Advice on possible solitary extramedullary plasmacytoma
I was on the phone with my hematologist today. On the CT they found four possible Plasmacytomas. All extramedullary. The two largest in my left gluteus maximus (5 cm) and one close to my liver (9 cm). They also found two small lesions in soft tissue. One close to the larger "Plasmacytoma" close to the liver and one in a muscle close to the pelvis on the right side. As I mentioned earlier my latest bonemarrow biopsy was fine. No signs of myeloma or genetic alterations or chromosomal abnormalities. I'm scheduled for needle biopsy of the two larger lesions. My father passed away in march after a four year battle with myeloma. During those years he went through two high dose chemo treatments with subsequent auto SCT. He became refractory to Velcade and Revlimid. He was put on Pomalyst which he could not tolerate. The doctors also tried Bendamustine. He finally died from Plasma Cell Leukemia.
A few questions are on my mind:
1) How important is thorough knowledge of my father's disease when it comes to my choice of treatment?
2) what treatment choices do I have? If these lesions indeed are Plasmacytomas.
3) How should my biopsies be treated in the lab? Is it possible to run FISH and flow cytometry?
Best regards,
Mattias from Sweden
A few questions are on my mind:
1) How important is thorough knowledge of my father's disease when it comes to my choice of treatment?
2) what treatment choices do I have? If these lesions indeed are Plasmacytomas.
3) How should my biopsies be treated in the lab? Is it possible to run FISH and flow cytometry?
Best regards,
Mattias from Sweden
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Advice on possible solitary extramedullary plasmacytoma
Great questions.
Regarding the biopsies, they should be able to run FISH on them.
Regarding treatment: If these prove to be plasmacytomas. . .My personal preference for multiple extramedullary plasmacytomas is to treat them with multiple agent chemotherapy. The confounding finding in your case is the long duration of remission between your previous bone plasmacytomas and these findings.
Unfortunately, as a group, patients with extramedullary disease often have a very aggressive disease with short remission durations. I often argue to treat similar to plasma cell leukemia (regimen of VTD-PACE or similar). Others would argue that perhaps the PACE part of the regimen isn't necessary provided early response is seen to proteosome inhibitor and immunomodulating agents.
In your situation, it may be difficult to predict how aggressive the disease will behave based on you previous plasmacytomas. At this point though, you will need systemic treatment.
hope this helps. all the best
Regarding the biopsies, they should be able to run FISH on them.
Regarding treatment: If these prove to be plasmacytomas. . .My personal preference for multiple extramedullary plasmacytomas is to treat them with multiple agent chemotherapy. The confounding finding in your case is the long duration of remission between your previous bone plasmacytomas and these findings.
Unfortunately, as a group, patients with extramedullary disease often have a very aggressive disease with short remission durations. I often argue to treat similar to plasma cell leukemia (regimen of VTD-PACE or similar). Others would argue that perhaps the PACE part of the regimen isn't necessary provided early response is seen to proteosome inhibitor and immunomodulating agents.
In your situation, it may be difficult to predict how aggressive the disease will behave based on you previous plasmacytomas. At this point though, you will need systemic treatment.
hope this helps. all the best
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Advice on possible solitary extramedullary plasmacytoma
Thank you for your reply Dr Valent. I will discuss this with my hematologist. It's a strange feeling to experience "health" when your labs and scans tell you otherwise....
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
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