Has anyone had a plasmacytoma of soft tissue after being diagnosed with multiple myeloma? If so, what treatment did you receive and what was your experience like?
I was diagnosed with multiple myeloma in December 2012. I had radiation, RVD (Revlimid, Velcade, dexamethasone) and a stem cell transplant and was in remission after one year. I have now been in remission 1 year.
A tumor was found when I had an X-ray to make sure I didn't have pneumonia recently and was told I needed a CT scan. After CT scan I was told I need biopsy and concern is I may have plasmacytoma in soft tissue around lung.
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Mona - Name: Mona
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/12/12
- Age at diagnosis: 56
Re: Soft tissue plasmacytoma - experiences?
Mona,
I'm not a doc, but this sounds like they may suspect extramedullary myeloma (a.k.a. "EMD").
"Extramedullary Myeloma," The Myeloma Beacon, Nov 4, 2011
The search features in the Beacon are your friend. You can find additional articles here:
https://myelomabeacon.org/tag/extramedullary-disease/
... and by clicking on the "advanced search" function towards the top of the forum page to find forum discussions of folks that have dealt with EMD.
I'm not a doc, but this sounds like they may suspect extramedullary myeloma (a.k.a. "EMD").
"Extramedullary Myeloma," The Myeloma Beacon, Nov 4, 2011
The search features in the Beacon are your friend. You can find additional articles here:
https://myelomabeacon.org/tag/extramedullary-disease/
... and by clicking on the "advanced search" function towards the top of the forum page to find forum discussions of folks that have dealt with EMD.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Soft tissue plasmacytoma - experiences?
Had several stints with the plasmacytoma. First time they surgically removed, the next time Pomalyst (pomalidomide, Imnovid) was used. Both were effective.
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jpollard - Name: jay pollard
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: jan 08
- Age at diagnosis: 52
Re: Soft tissue plasmacytoma - experiences?
Thank you for the replies and links to information. This is very helpful. I am very nervous about the outcome of my biopsy, but have to wait until Monday for the biopsy and another 3-5 days for the results.
I am trying to stay positive, but it is difficult. I have an aggressive form of multiple myeloma but have responded very well to treatment so far. I can only hope I can have a good response to treatment if needed after the biopsy. I have read there is a very short life span in some cases of EMD or plasmacytoma in soft tissue.
I am trying to stay positive, but it is difficult. I have an aggressive form of multiple myeloma but have responded very well to treatment so far. I can only hope I can have a good response to treatment if needed after the biopsy. I have read there is a very short life span in some cases of EMD or plasmacytoma in soft tissue.
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Mona - Name: Mona
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/12/12
- Age at diagnosis: 56
Re: Soft tissue plasmacytoma - experiences?
J pollad,
Thank you for your reply. Did you have myeloma before the plasmacytomas? Or just plasmacytomas? Do you think the location of the plasmacytoma affects whether surgery or other treatment was used?
Thanks a lot,
Mona
Thank you for your reply. Did you have myeloma before the plasmacytomas? Or just plasmacytomas? Do you think the location of the plasmacytoma affects whether surgery or other treatment was used?
Thanks a lot,
Mona
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Mona - Name: Mona
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/12/12
- Age at diagnosis: 56
Re: Soft tissue plasmacytoma - experiences?
Yes, was 5 years into treatment. They showed up after my second SCT. Seemed to have started from the healing of my 3 piece catheter in my chest. The surgeon that put it in removed the first one – maybe 3 knots the size of a quarter on left side of chest. When oncologist found out, he said he wanted to try meds. Came back in about six months and he first tried dex, seems like 40 mg a day for four days on and off after 3 weeks. I didn't like that and it was time to change therapy.
The Pomalyst took care of it in a month and have been gone now for about 6 or 7 months so far and all indicators are still down and falling nicely.
The Pomalyst took care of it in a month and have been gone now for about 6 or 7 months so far and all indicators are still down and falling nicely.
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jpollard - Name: jay pollard
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: jan 08
- Age at diagnosis: 52
Re: Soft tissue plasmacytoma - experiences?
Mona,
Beaming good thoughts your way regarding your upcoming biopsy. I understand this can be a very worrisome time. Please let us know how things turn out with your biopsy.
Beaming good thoughts your way regarding your upcoming biopsy. I understand this can be a very worrisome time. Please let us know how things turn out with your biopsy.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Soft tissue plasmacytoma - experiences?
Thanks Multibilly, will do.
JPollard,
Good to hear the Pomalyst is working. Thanks for your feedback.
JPollard,
Good to hear the Pomalyst is working. Thanks for your feedback.
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Mona - Name: Mona
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/12/12
- Age at diagnosis: 56
Re: Soft tissue plasmacytoma - experiences?
When diagnosed, I had myeloma bone lesions in several places and I also had a plasmacytoma growing on my lower spine.
When I took the CyBorD (cyclophosphamide, bortezomib [Velcade], dexamethasone; also know as VCD) chemo, it also shrank away the plasmacytoma and I never needed to attack it with radiation or surgery.
I also had fluid trouble outside my lung, but they never spotted the cause. The chemo cleared that up in a few months, too, so I never had to go to the chest specialist.
When I took the CyBorD (cyclophosphamide, bortezomib [Velcade], dexamethasone; also know as VCD) chemo, it also shrank away the plasmacytoma and I never needed to attack it with radiation or surgery.
I also had fluid trouble outside my lung, but they never spotted the cause. The chemo cleared that up in a few months, too, so I never had to go to the chest specialist.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Soft tissue plasmacytoma - experiences?
Dana - Was the plasmacytoma you mentioned that was on your spine a bone or soft tissue plasmacytoma?
As I understand it, there are two kinds of plasmacytomas. There are bone plasmacytomas, which cause the bone lesions you so often present in multiple myeloma patients. And there are soft tissue plasmacytomas, which are present outside the bone -- hence, as Multibilly pointed out, often called "extramedullary" (outside the bone) myeloma, plasmacytomas, or disease.
As I understand it, there are two kinds of plasmacytomas. There are bone plasmacytomas, which cause the bone lesions you so often present in multiple myeloma patients. And there are soft tissue plasmacytomas, which are present outside the bone -- hence, as Multibilly pointed out, often called "extramedullary" (outside the bone) myeloma, plasmacytomas, or disease.
10 posts
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