My father's oncologist just informed me that my dad has extramedullary myeloma.
As I mentioned in earlier posts, my dad's prognosis looked good to me as his plasma cells were so low (3%). Apparently, he could have a more aggressive form of the disease, which may explain some issues he is having with treatment.
I would like to learn more about this type of multiple myeloma (extramedullary myeloma) and it's prognosis. We did not realise the plasmacytoma in his skull was considered this type.
My dad and I feel that he has a more aggressive type but the numbers are low and his type of multiple myeloma is very 'unusual' ( low plasma cells, no kidney involvement etc..).
He does have 4 plasmacytomas so it has been very confusing to understand where he is 'stage wise'.
Any info or experience with this would be appreciated.I haven't found anyone with this similar type of multiple myeloma on this forum. The doctors are also baffled as he had no pain and he barely meets the criteria for multiple myeloma except for the multiple lesions. It's a bit of a shock to learn he may have a more aggressive form of this disease.
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Re: Extramedullary plasmacytoma
Hello Pootreen,
You can find a lengthy overview of what extramedullary myeloma is, what it's implications are for a patient's prognosis, and different options for treating it in this Beacon review article,
"Extramedullary Myeloma," The Myeloma Beacon, Nov 4, 2011.
There are also a number of news and opinion articles here at The Beacon with more updated information about extramedullary myeloma. You can find them here:
https://myelomabeacon.org/tag/extramedullary-disease/
As you'll see, extramedullary myeloma is myeloma that is outside of the bone marrow. It occurs when malignant plasma cells collect together and form tumors ("plasmacytomas") in parts of the body other than a patient’s bones.
Extramedullary disease, whether at diagnosis or at relapse, is generally viewed as a sign that a patient's myeloma is more aggressive and more treatment-resistant. Most myeloma specialists we've spoken with tend to prefer more intensive treatment regimens for patients who have extramedullary disease.
We hope your father's doctors are able to adjust his therapy to account for the finding of extramedullary disease, and that his myeloma responds to the treatment.
Good luck!
You can find a lengthy overview of what extramedullary myeloma is, what it's implications are for a patient's prognosis, and different options for treating it in this Beacon review article,
"Extramedullary Myeloma," The Myeloma Beacon, Nov 4, 2011.
There are also a number of news and opinion articles here at The Beacon with more updated information about extramedullary myeloma. You can find them here:
https://myelomabeacon.org/tag/extramedullary-disease/
As you'll see, extramedullary myeloma is myeloma that is outside of the bone marrow. It occurs when malignant plasma cells collect together and form tumors ("plasmacytomas") in parts of the body other than a patient’s bones.
Extramedullary disease, whether at diagnosis or at relapse, is generally viewed as a sign that a patient's myeloma is more aggressive and more treatment-resistant. Most myeloma specialists we've spoken with tend to prefer more intensive treatment regimens for patients who have extramedullary disease.
We hope your father's doctors are able to adjust his therapy to account for the finding of extramedullary disease, and that his myeloma responds to the treatment.
Good luck!
Re: Extramedullary plasmacytoma
Dear Pootren,
It is possible that there is a misunderstanding regarding the semantics here. A skull-based lesion is not extramedullary disease, although it is concerning if the tumor (the plasmacytoma) grows beyond the confines of bone into the surrounding tissue, suggesting that, like extramedullary myeloma, the disease is less reliant on factors in the bone marrow for its growth and prosperity.
It is possible that your dad has a multifocal bone presentation, in which multiple bone lesions are identified, but the bone marrow shows little to no myeloma. Extramedullary disease is non-bone based disease, and can show up just about anywhere, including lymph nodes, under the skin, liver, pancreas - you name it.
Myeloma with multiple bone lesions and an underwhelming bone marrow is not considered high risk. I think that may be what you are describing with your dad. It is still treated like standard myeloma. Extramedullary myeloma as described here is a more aggressive disease.
I hope this helps.
Take care!
Pete V.
It is possible that there is a misunderstanding regarding the semantics here. A skull-based lesion is not extramedullary disease, although it is concerning if the tumor (the plasmacytoma) grows beyond the confines of bone into the surrounding tissue, suggesting that, like extramedullary myeloma, the disease is less reliant on factors in the bone marrow for its growth and prosperity.
It is possible that your dad has a multifocal bone presentation, in which multiple bone lesions are identified, but the bone marrow shows little to no myeloma. Extramedullary disease is non-bone based disease, and can show up just about anywhere, including lymph nodes, under the skin, liver, pancreas - you name it.
Myeloma with multiple bone lesions and an underwhelming bone marrow is not considered high risk. I think that may be what you are describing with your dad. It is still treated like standard myeloma. Extramedullary myeloma as described here is a more aggressive disease.
I hope this helps.
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Extramedullary plasmacytoma
Thank you. The doctor did say it was an 'extramedullary plasmacytoma' in his head. It starts in the skull base.The doctor is concerned that it is more aggressive than they thought at the onset. My dad and I feel it is also.
Initially, they said the same thing you just did, that his myeloma was actually standard or even low risk. He is really not doing very well, but the doctor is watching him very closely. He has another CT scan coming up soon. Hopefully we will learn more then.
I did read those articles listed but it still doesn't explain the very low plasma cell (3 percent, which doesn't even make him fit the criteria for extramedullary disease) count with the multiple lesions. I also read other articles that say that there is a difference if it is after relapse vs initial diagnosis.
I really wanted to hear from real people who experienced this rather than articles. Maybe it's just not that common.
Initially, they said the same thing you just did, that his myeloma was actually standard or even low risk. He is really not doing very well, but the doctor is watching him very closely. He has another CT scan coming up soon. Hopefully we will learn more then.
I did read those articles listed but it still doesn't explain the very low plasma cell (3 percent, which doesn't even make him fit the criteria for extramedullary disease) count with the multiple lesions. I also read other articles that say that there is a difference if it is after relapse vs initial diagnosis.
I really wanted to hear from real people who experienced this rather than articles. Maybe it's just not that common.
Re: Extramedullary plasmacytoma
Skull base sounds as though it started in bone. I suspect there is a component of the mass that has grown beyond the confines of bone. At this location, the tumor can cause headaches and sometimes compress nerves that can affect vision. I hope your father is on treatment.
The fact that the marrow was unremarkable is neither a bad or good thing. It just means that his disease is very patchy in distribution. The same rules for treating myeloma apply to your father's case and if extramedullary disease is in fact present, more aggressive therapy may be required if he can tolerate it. Odds are good that he will respond to treatment.
Best of luck to you and your family!
Pete V.
The fact that the marrow was unremarkable is neither a bad or good thing. It just means that his disease is very patchy in distribution. The same rules for treating myeloma apply to your father's case and if extramedullary disease is in fact present, more aggressive therapy may be required if he can tolerate it. Odds are good that he will respond to treatment.
Best of luck to you and your family!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Extramedullary plasmacytoma
Hi, I was diagnosed with an extra medullary plasmycytoma in 2010. It presented on my pancreas. I had about 4 months of Revlimid and dex, then after it shrank, I received radiation for a month. Finished treatment in October. The plasmycytoma returned in June 2011, I received several months of chemo, then a stem cell transplant in sept 2011. It returned in September 3012, had Revlimid, dex and and another iv chemo I don't remember name. I'm doing well now just get tired easy. I'm on Revlimid 5mg with dexamethasine, so far it's working for me, I am 56 yrs old and took an early retirement because I know there are no guarantees in life. I want to enjoy my life which I am and share time with family and friends.I hope this could help you with your Dad.
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Eliz
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