I was wondering if anyone has ever had solitary plasmacytoma cured & the another one yrs later without it actually becoming multiple myeloma yet?
Also, is it possible to have more then one plasmacytoma at the same time & it not be considered multiple myeloma?
Is it possible to get a solitary plasmacytoma in one place & have it reoccur in the same place or around the same place yrs later after radiation had taken it away?
Just so many questions these days...sorry. Seems like everyone situation can be so different, looking for answers about what to expect for your actual situation can be difficult some times.
Thanks for any responses & thanks for sharing all of your knowledge & experiences with all of us on this forum, what an excellent place for knowledge.
Forums
Re: How many solitary plasmcytomas
I wish I had the answers to your questions, but as you pointed out, each case is so unique. I thought I'd share my husband's info, though, as it is somewhat relevant. My husband was initially diagnosed due to finding a plasmacytoma on his rib. Unfortunately, he had many lytic lesions and plasmacytomas- we just couldn't see them like we saw the one on his chest. He had full blown multiple myeloma and went on chemo for a year and a half, then a SCT.
The part I thought you might be interested in is that when my husband relapsed from the SCT (after about 6 months), he had no marrow involvement- he had many plasmacytomas (several of which were biopsied, so we know for sure what they were), most of which were showing up in areas he had had them before, but his M-Spike continued to say that he was in remission (he had an m-spike during the first chemo, so don't think it's non-secretory). His PET scans also didn't show any marrow activity (though the PET scan also said one spot wasn't active, even though the biopsy said it was, so take those scans with a grain of salt).
So, just based on our experience, yes plasmacytomas seem more likely to pop up where they were before (residual disease maybe?) and you can have them without an M-Spike (don't know what qualifies under your question on whether you can have plasmacytomas without actually having multiple myeloma).
The part I thought you might be interested in is that when my husband relapsed from the SCT (after about 6 months), he had no marrow involvement- he had many plasmacytomas (several of which were biopsied, so we know for sure what they were), most of which were showing up in areas he had had them before, but his M-Spike continued to say that he was in remission (he had an m-spike during the first chemo, so don't think it's non-secretory). His PET scans also didn't show any marrow activity (though the PET scan also said one spot wasn't active, even though the biopsy said it was, so take those scans with a grain of salt).
So, just based on our experience, yes plasmacytomas seem more likely to pop up where they were before (residual disease maybe?) and you can have them without an M-Spike (don't know what qualifies under your question on whether you can have plasmacytomas without actually having multiple myeloma).
Re: How many solitary plasmcytomas
Wow thank you Ladyaero, you did answer my questions. I will have a skeletal survey tomorrow then see my cancer Dr. next week. According to my blood counts I am still in remission but according to the couple of scans I have had so far, looks like the cancer is coming back. So I get confused, how are you supposed to keep an eye on it & know if you are getting a plasmacytoma or multiple plasmacytomas if it doesn't show up in your blood? The only reason I started having scans done were because of increase in pain so Orthopedic Dr started ordering tests which I follow up with next week with the Cancer Dr.
Again, thanks for sharing your husbands experience, it did help.
Terri
Again, thanks for sharing your husbands experience, it did help.
Terri
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How many solitary plasmcytomas
Hi Terri!
I've had two solitary plasmacytomas over the years. The first one in dec 2009 when a fractured My left femur, (pathological fracture due to previous undiagnosed plasmacytoma). No M-spike at the time. I had surgery and radiation. In may 2011 i experienced severe pain in my lower back after a 6 month period with M-spike growing from 2g/l to 8g/l. X-rays and CT showed a large plasmacytoma in L1. I had another round of surgery and radiation and post surgery blood and urine tests showed I was in complete response. I go to follow ups every third month and I feel fine. The risk that I will develop multiple myeloma is rather high but I try to focus on the good things in life and be grateful for the fact that I am now healthy. I get good support from family and friends and hope that I can keep my health for such a long time that the treatments available will be better and safer than today. My father passed away in march this year after a 4 year battle with myeloma. He had standard risk disease but became resistant to Revlimid and Velcade. He had two STC:s but only had short times of remission. He was only 63 when he died. multiple myeloma converted to plasma cell leukemia. Some sort of genetic inheritance is probable. I'm 43 and alive and kicking!
I wish you the best, kind regards from Mattias in Sweden.
I've had two solitary plasmacytomas over the years. The first one in dec 2009 when a fractured My left femur, (pathological fracture due to previous undiagnosed plasmacytoma). No M-spike at the time. I had surgery and radiation. In may 2011 i experienced severe pain in my lower back after a 6 month period with M-spike growing from 2g/l to 8g/l. X-rays and CT showed a large plasmacytoma in L1. I had another round of surgery and radiation and post surgery blood and urine tests showed I was in complete response. I go to follow ups every third month and I feel fine. The risk that I will develop multiple myeloma is rather high but I try to focus on the good things in life and be grateful for the fact that I am now healthy. I get good support from family and friends and hope that I can keep my health for such a long time that the treatments available will be better and safer than today. My father passed away in march this year after a 4 year battle with myeloma. He had standard risk disease but became resistant to Revlimid and Velcade. He had two STC:s but only had short times of remission. He was only 63 when he died. multiple myeloma converted to plasma cell leukemia. Some sort of genetic inheritance is probable. I'm 43 and alive and kicking!
I wish you the best, kind 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: How many solitary plasmcytomas
Hi Terri,
This is really a nice question and I was looking for an answer for that too. My mother was diagonised with non secretory solitary Plasmacytoma in 2011 in her right femur bone, after she suffered with a Pathological fracture. She was treated with surgery and radiation. Then she was on Thalidomide for a couple of months. But after that she complained of pain in her left hand and MRI revealed that she had some lesion in left hand as well. She doesnt have any M-spike. The doctor said she has multiple solitary plasmacytomas and not multiple myeloma. The only test that she showed abnormal was kappa light chain where there were high kappa readings. The doctor then treated her with Velcade and now she is on maintainence Revlimid 10 mg alternate days.
Just like I also had this question if there can by multiple plasmacytomas but no multiple myeloma. And what are the chances of progressing to multiple myeloma if one has multiple plasmacytomas.
Ruchi
This is really a nice question and I was looking for an answer for that too. My mother was diagonised with non secretory solitary Plasmacytoma in 2011 in her right femur bone, after she suffered with a Pathological fracture. She was treated with surgery and radiation. Then she was on Thalidomide for a couple of months. But after that she complained of pain in her left hand and MRI revealed that she had some lesion in left hand as well. She doesnt have any M-spike. The doctor said she has multiple solitary plasmacytomas and not multiple myeloma. The only test that she showed abnormal was kappa light chain where there were high kappa readings. The doctor then treated her with Velcade and now she is on maintainence Revlimid 10 mg alternate days.
Just like I also had this question if there can by multiple plasmacytomas but no multiple myeloma. And what are the chances of progressing to multiple myeloma if one has multiple plasmacytomas.
Ruchi
Re: How many solitary plasmcytomas
Hi All,
My partner Amy has had multiple plasmocytomas. Two main staging systems exist: the International staging system (ISS) and the Durie-Salmon staging system. According to both once you have more than one plasmocytoma you are considered to have multiple myeloma (multiple myeloma).
I would be interested to know if anyone else out there has had multiple plasmocytomas but has not had a significantly elevated m-protein and has had a clean bone marrow.
Amy has gone thru radiation for her plasmocytomas (they should never come back to the same place if properly radiated) and Revlimid, Velcade and Dexamethasone (RVD). She is in complete remission (CR) now and has had her stem cells collected but is waiting before doing a stem cell transplant.
I would like to start a database of all patients with multiple plasmocytomas without other significant marker of disease.( i.e. low m-protein, normal hematocrit, normal albumin, normal calcium etc) I am interested in seeing how you are being medically treated and how this group is progressing. I think the more information we can collect the better off we will be on how to treat this rare form of multiple myeloma.
Look forward to your responses.
Sincerely,
Joe Connor
My partner Amy has had multiple plasmocytomas. Two main staging systems exist: the International staging system (ISS) and the Durie-Salmon staging system. According to both once you have more than one plasmocytoma you are considered to have multiple myeloma (multiple myeloma).
I would be interested to know if anyone else out there has had multiple plasmocytomas but has not had a significantly elevated m-protein and has had a clean bone marrow.
Amy has gone thru radiation for her plasmocytomas (they should never come back to the same place if properly radiated) and Revlimid, Velcade and Dexamethasone (RVD). She is in complete remission (CR) now and has had her stem cells collected but is waiting before doing a stem cell transplant.
I would like to start a database of all patients with multiple plasmocytomas without other significant marker of disease.( i.e. low m-protein, normal hematocrit, normal albumin, normal calcium etc) I am interested in seeing how you are being medically treated and how this group is progressing. I think the more information we can collect the better off we will be on how to treat this rare form of multiple myeloma.
Look forward to your responses.
Sincerely,
Joe Connor
Re: How many solitary plasmacytomas
Joe thanks for replying. As I said in a previous post, as of right now, I have no confirmed plasmacytoma's PET scan next week. I have always had perfect blood test scores & clean bone marrow, even when I had my solitary plasmacytoma.
I wish you luck on your findings because we can all benefit from data bases such as you are suggesting. Keep the fight going for all of us
I wish you luck on your findings because we can all benefit from data bases such as you are suggesting. Keep the fight going for all of us
Re: How many solitary plasmacytomas
Solitary plasmacytomas of bone are somewhat uncommon, representing only 5% of all plasma cell disorders. The literature would suggest that the risk of a solitary plasmacytoma of bone (with no evidence of abnormal clonal plasma cells in the bone marrow) evolving into multiple myeloma over time is ~60%. If there are clonal plasma cells in the bone marrow, most of those patients will eventually go on to develop multiple myeloma. The more frequent use of whole body PET-CT and extensive MRI imaging helps predict risk of progression to myeloma. A patient with a small plasmacytoma of bone, no clonal plasma cells in the bone marrow, a normal MRI and PET-CT (aside from the one plasmacytoma) is going to be at lower risk of progression to myeloma than someone with other subtle bone changes on MRI or PET-CT that were missed by plain x-rays. Additionally, persistence of an M-spike after radiation of a solitary plasmacytoma would indicate residual clonal plasma cells left behind after radiation -- these patients are at higher risk of developing myeloma over time.
Treatment of choice for solitary plasmacytoma of bone is radiation. For those that progress after radiation, the majority will manifest with overt myeloma. Local recurrence (within the prior radiation field) is uncommon, occurring in ~10% of those who progress after radiation. Recurrence can also manifest as another solitary plasmacytoma of bone, although this is uncommon. Whether this should be treated as another solitary plasmacytoma of bone (i.e. radiated) or treated with systemic therapy should be taken on a case by case basis (e.g. what was the time interval between the development of the 2 plasmacytomas? Are there clonal plasma cells in the marrow? Are there more subtle bone lesions on PET-CT or MRI?).
Hope this helps. Take care and good luck!
Pete V.
In general, most would argue that numerous plasmacytomas of bone in the absence of marrow involvement is equivalent to multiple myeloma and should be treated as such.
Treatment of choice for solitary plasmacytoma of bone is radiation. For those that progress after radiation, the majority will manifest with overt myeloma. Local recurrence (within the prior radiation field) is uncommon, occurring in ~10% of those who progress after radiation. Recurrence can also manifest as another solitary plasmacytoma of bone, although this is uncommon. Whether this should be treated as another solitary plasmacytoma of bone (i.e. radiated) or treated with systemic therapy should be taken on a case by case basis (e.g. what was the time interval between the development of the 2 plasmacytomas? Are there clonal plasma cells in the marrow? Are there more subtle bone lesions on PET-CT or MRI?).
Hope this helps. Take care and good luck!
Pete V.
In general, most would argue that numerous plasmacytomas of bone in the absence of marrow involvement is equivalent to multiple myeloma and should be treated as such.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: How many solitary plasmacytomas
I am considered to have smoldering myeloma. I had a solitary plasmacytoma 2 years ago. My doctor said this didn't change my staging. What I am worried about is that I may have developed another in the same place. It was in the great trochanter.
Can someone help to relieve my nerves or help me decide what I need to do?
Can someone help to relieve my nerves or help me decide what I need to do?
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Achank
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