I have an interesting question for all of you on the forum. A good friend of mine was diagnosed with multiple myeloma in spring 2015. She had Revlimid, Velcade, and dexamethasone (RVD) induction with good response, followed by an autologous stem cell transplant (ASCT) in October 2015 with good response. In March 2016 she noticed a couple of lumps in her breast. She went to the gynecologist and had the lumps biopsied. They came back negative for breast cancer, but positive for multiple myeloma.
All of the tests for myeloma were negative except for the lumps in her breast. She was started on Pomalyst, Kyprolis, and dexamethasone and had radiation to the lumps in her breast. She responded well to treatment and again there were no signs of multiple myeloma. In August she found some more lumps in her breast and again they tested positive for myeloma. She had more radiation to the breast and appeared to be doing well.
Her treatment was changed to Velcade, I think, and Darzalex (daratumumab) in January. After 4 infusions of Darzalex it became evident that it wasn't working. She had developed more internal lumps in her breast and now surface lesions. Her oncologist, a well known myeloma specialist, recommended a mastectomy to remove the plasmacytomas, since there is no evidence of myeloma anywhere else in her body. A myeloma specialist at Dana Farber in Boston, who she saw for a second opinion, had recommended that course of action last May.
Has anyone heard of this type of presentation and/or solution? I haven't yet looked on the internet to see what I could find, but thought that someone here might have heard of such a situation. My friend gave me permission to tell her story. I don't have all of the details, but most of them are here. She is in surgery right now for the mastectomy.
Thank you,
Nancy in Phila
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Mastectomy for plasmacytomas in the breast
Nancy,
So sorry to hear about your friend's situation.
I can't seem to grasp how someone who tests negative for multiple myeloma after being diagnosed and treated – technically minimal residual disease (MRD) negative – can develop a plasmacytoma.
I recently went to a patient meeting where the local university myeloma specialist stated that, if a existing drug regimen was holding a patients myeloma stable (which I took as labs were remaining stable, they don't do much imaging or bone marrow biopsies), yet plasmacytomas developed, then he would continue the existing drug regimen and radiate the tumors.
That made absolutely no sense to me, but he's the doctor. Afterwards, a lady who was his patient asked if that pertained to her. Which it doesn't. She then proceeded to raise her bangs to show a huge plasmacytoma on her forehead. She was reluctant to radiate it because of it's location. I didn't offer anything but support.
I'm curious if others believe their myeloma is stable while developing plasmacytomas.
So sorry to hear about your friend's situation.
I can't seem to grasp how someone who tests negative for multiple myeloma after being diagnosed and treated – technically minimal residual disease (MRD) negative – can develop a plasmacytoma.
I recently went to a patient meeting where the local university myeloma specialist stated that, if a existing drug regimen was holding a patients myeloma stable (which I took as labs were remaining stable, they don't do much imaging or bone marrow biopsies), yet plasmacytomas developed, then he would continue the existing drug regimen and radiate the tumors.
That made absolutely no sense to me, but he's the doctor. Afterwards, a lady who was his patient asked if that pertained to her. Which it doesn't. She then proceeded to raise her bangs to show a huge plasmacytoma on her forehead. She was reluctant to radiate it because of it's location. I didn't offer anything but support.
I'm curious if others believe their myeloma is stable while developing plasmacytomas.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Mastectomy for plasmacytomas in the breast
Hi Nancy,
Not exactly the same, but my sister was originally diagnosed when she developed a lump in her breast. When malignant cells were found, the doctors rushed with a mastectomy and only later realized that it was not breast cancer, but a plasmacytoma of the breast. Further tests confirmed multiple myeloma. Not sure if mastectomy would be a long-term solution. My sister subsequently developed cutaneous plasmacytomas elsewhere, when in complete remission.
Not exactly the same, but my sister was originally diagnosed when she developed a lump in her breast. When malignant cells were found, the doctors rushed with a mastectomy and only later realized that it was not breast cancer, but a plasmacytoma of the breast. Further tests confirmed multiple myeloma. Not sure if mastectomy would be a long-term solution. My sister subsequently developed cutaneous plasmacytomas elsewhere, when in complete remission.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Mastectomy for plasmacytomas in the breast
Hi Nancy,
I am so sorry to hear about your friend's situation with plasmacytomas of the breasts, and then having to undergo a complete mastectomy. Please convey my sympathies to her. Plasmacytomas must be difficult to analyze, since they don't always show up as myeloma on blood tests.
When I had recent surgery, the pathology lab tested for myeloma cells, as well as for other cancer cells, which I suppose means that myeloma cells can show up anywhere.
I am so sorry to hear about your friend's situation with plasmacytomas of the breasts, and then having to undergo a complete mastectomy. Please convey my sympathies to her. Plasmacytomas must be difficult to analyze, since they don't always show up as myeloma on blood tests.
When I had recent surgery, the pathology lab tested for myeloma cells, as well as for other cancer cells, which I suppose means that myeloma cells can show up anywhere.
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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: Mastectomy for plasmacytomas in the breast
I have never heard of this before. When I hear of a extramedullary plasmacytoma, it's usually in the nasal passage.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Mastectomy for plasmacytomas in the breast
My husband has had dozens of extramedullary plasmacytomas on his leg, chest, back, head and in his cheek, all while having blood work that says he is fine (he had an M-spike when he was diagnosed, but not since having a stem cell transplant 5 years ago). I hope that, since it is already happening, the mastectomy helps stop the proliferation of the plasmacytomas, but (based only on my husband's presentation) if they are in one area, they will eventually pop up in other areas. We have been basically bouncing back and forth between radiation (when the tumors are in localized regions) and various treatment regimens (when they are in too many places, or in areas that have had too much radiation or are just popping up too fast) since his diagnosis in 2010.
Re: Mastectomy for plasmacytomas in the breast
My sister has just relapsed again with a plasmacytoma on the scar of her port (!) The surgeon removed the tumor. The histology report is not there yet, but the surgeon was pretty sure it was a plasmacytoma. Just to remind you: my sister was diagnosed following a large plasmacytoma in her breast. She did have a mastectomy when the doctor thought it was breast cancer and rushed it. Now looking back she regrets having had a mastectomy, as she went on developing other extramedullary tumors anyway. Those disappeared following EDAP chemotherapy. It's now been 3 months since her stem cell transplant and we seem to be on square one.
Ladyaero, we just spoke about your husband with my sister, as I was going through my older post about extramedullary disease. You posted in that earlier thread about your experience. It was a great support then, and I am glad that your husband's plasmacytomas can still be controlled somewhat. I am reading everywhere that this kind of presentation means the disease is more aggressive and prognosis is worse than average. So, such examples are a great support.
Ladyaero, we just spoke about your husband with my sister, as I was going through my older post about extramedullary disease. You posted in that earlier thread about your experience. It was a great support then, and I am glad that your husband's plasmacytomas can still be controlled somewhat. I am reading everywhere that this kind of presentation means the disease is more aggressive and prognosis is worse than average. So, such examples are a great support.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Mastectomy for plasmacytomas in the breast
Yes, I too have read all of the articles- according to everything published, my hubby was about as high risk/poor prognosis as you can get, right from the beginning, but 7 years later he is still here, still fighting. Wishing good responses and many good years for your sister, as well!
Re: Mastectomy for plasmacytomas in the breast
Ladyaero: thank you very much for your support. My very best wishes of good health to you and your husband! It's great to hear that he is defeating the statistics. Hopefully, the prognosis is changing in front of our eyes with all the new treatments that are coming up.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Mastectomy for plasmacytomas in the breast
Thank you everyone who has posted about plasmacytomas. Gala, I haven't read the article that you referenced yet, but will. My friend didn't have any scar tissue in her breast, but of course now does.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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