I started all this with a plasmacytoma on my scapula biopsied with plasma cells and not extramedullary. Later, two other (smaller) lesions were detected, one on spine and one on rib. I have a low M-spike of 0.6 g/dL and bone marrow was negative. Seems I am in an odd place and starting chemo. Everything else is normal except for light chains. Not a lot of info on this set of facts.
Does solitary plasmacytoma mean only one lesion throughout body, or can it be multiple single lesions without the + bone marrow for multiple myeloma?
Are there sources of information on multiple plasmacytomas?
Forums
8 posts
• Page 1 of 1
Re: Multiple plasmacytomas
Hello Vortextoo,
Multiple myeloma patients often have more than one bone lesion at diagnosis, and bone lesions result from plasmacytomas in the bone. So it's not unusual for multiple myeloma patient to have multiple plasmacytomas at diagnosis.
A solitary plasmacytoma by definition means that a patient has only a single ("solitary") plasmacytoma. You can't have multiple bone plasmacytomas and have solitary plasmacytoma.
The one odd thing in your case, as you suggest, is that your bone marrow biopsy came up negative for any myeloma cells. However, that's not unheard of. Myeloma is often a "patchy" disease, meaning that you can find myeloma cells in some bones of the body, but not others.
Since you have an M-spike, there's a clear sign that you have some sort of plasma cell disorder. However, with a negative bone marrow biopsy, it's worth making sure that the lesions you have truly are from plasmacytomas. Were any, or all, of them biopsied to determine if they are truly plasmacytomas?
The other question that is relevant is: Do you have any other signs of the disease, such as low hemoglobin levels, signs of kidney damage (e.g., a high creatinine level), or above-normal calcium levels in the blood?
Also, you probably had a serum (blood) free light chain test. What were the results of that test?
Sorry to ask so many questions. However, as you've suggested simply by posting your question here, your situations isn't totally standard, so some additional information is necessary to figure things out.
Hope this helps a bit.
Multiple myeloma patients often have more than one bone lesion at diagnosis, and bone lesions result from plasmacytomas in the bone. So it's not unusual for multiple myeloma patient to have multiple plasmacytomas at diagnosis.
A solitary plasmacytoma by definition means that a patient has only a single ("solitary") plasmacytoma. You can't have multiple bone plasmacytomas and have solitary plasmacytoma.
The one odd thing in your case, as you suggest, is that your bone marrow biopsy came up negative for any myeloma cells. However, that's not unheard of. Myeloma is often a "patchy" disease, meaning that you can find myeloma cells in some bones of the body, but not others.
Since you have an M-spike, there's a clear sign that you have some sort of plasma cell disorder. However, with a negative bone marrow biopsy, it's worth making sure that the lesions you have truly are from plasmacytomas. Were any, or all, of them biopsied to determine if they are truly plasmacytomas?
The other question that is relevant is: Do you have any other signs of the disease, such as low hemoglobin levels, signs of kidney damage (e.g., a high creatinine level), or above-normal calcium levels in the blood?
Also, you probably had a serum (blood) free light chain test. What were the results of that test?
Sorry to ask so many questions. However, as you've suggested simply by posting your question here, your situations isn't totally standard, so some additional information is necessary to figure things out.
Hope this helps a bit.
Re: Multiple plasmacytomas
I recently relapsed after a two year complete remission (CR) following a stem cell transplant (SCT). MRI shows two "marrow replacing plasmacytomas at L2 and L5. Oncologists is not sure whether to radiate or not. I also have bulging disc at L2, L5 and T12. I have not had any chemo for 18 months. I thought radiation was a normal protocol?
-
SandyR - Name: Sandy R
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 8/1/2012
- Age at diagnosis: 59
Re: Multiple plasmacytomas
Yes light chains were elevated ratio kappa lambda 16 mg/dl
Bone biopsy of scapula lesion confirmed plasma cells.
All other tests negative.
Being treated systemically as for multiple myeloma.
Bone biopsy of scapula lesion confirmed plasma cells.
All other tests negative.
Being treated systemically as for multiple myeloma.
Re: Multiple plasmacytomas
Vortextoo,
I wish you the best in your treatment for plasmacytomas. I am being treated by a multiple myeloma specialist and highly recommend that anyone, and you may be, with any type of multiple myeloma, be seen by a multiple myeloma specialist. They see a lot of patients every year with these types of issues and have the latest access to new meds and clinical trials.
I did not have any plasmacytomas at diagnosis in January 2015, but after receiving a very good partial response (VGPR) after 3 months on Revlimid, Velcade, and dexamethasone (RVD), a single plasmacytoma was seen on a pre-transplant PET scan. I received 8 days of radiation for this and it did help reduce the size, but in those 2 weeks multiple plasmacytomas developed quickly and were diagnosed in my breast, liver, spleen and the base of my skull.
The stem cell transplant has been put on hold indefinitely while I am being treated systemically with Kyprolis, Cyoxtan, Pomalyst, and dex. I just received my first blood test after Cycle 1 of the KCPd and my numbers have greatly improved. Still waiting on the 24-hour urine test results.
The doctors said I am oligo-secreatory, so my blood / urine tests do not tell a complete picture. I will take another PET scan at the end of Cycle 2 or 3 to further evaluate the results.
I had never heard of multiple myeloma when I was diagnosed and during my induction treatment I was not aware of plasmacytomas. It is definitely nerve wracking dealing with this disease and then a relapse. I'm praying the new treatments being developed will help improve the progression-free survival (PFS) / overall survival (OS) of those of us with this aggressive form of the disease.
I wish you the best in your treatment for plasmacytomas. I am being treated by a multiple myeloma specialist and highly recommend that anyone, and you may be, with any type of multiple myeloma, be seen by a multiple myeloma specialist. They see a lot of patients every year with these types of issues and have the latest access to new meds and clinical trials.
I did not have any plasmacytomas at diagnosis in January 2015, but after receiving a very good partial response (VGPR) after 3 months on Revlimid, Velcade, and dexamethasone (RVD), a single plasmacytoma was seen on a pre-transplant PET scan. I received 8 days of radiation for this and it did help reduce the size, but in those 2 weeks multiple plasmacytomas developed quickly and were diagnosed in my breast, liver, spleen and the base of my skull.
The stem cell transplant has been put on hold indefinitely while I am being treated systemically with Kyprolis, Cyoxtan, Pomalyst, and dex. I just received my first blood test after Cycle 1 of the KCPd and my numbers have greatly improved. Still waiting on the 24-hour urine test results.
The doctors said I am oligo-secreatory, so my blood / urine tests do not tell a complete picture. I will take another PET scan at the end of Cycle 2 or 3 to further evaluate the results.
I had never heard of multiple myeloma when I was diagnosed and during my induction treatment I was not aware of plasmacytomas. It is definitely nerve wracking dealing with this disease and then a relapse. I'm praying the new treatments being developed will help improve the progression-free survival (PFS) / overall survival (OS) of those of us with this aggressive form of the disease.
Re: Multiple plasmacytomas
I've read that some doctors will consider a limit of two plasmacytomas for solely radiation treatment as long as there are no positive CRAB findings; any positive CRAB results or more than two plasmacytomas, there seems to be a concensus (from what I have read) that it is a multiple myeloma diagnosis.
(I am not a doctor or nurse)
(I am not a doctor or nurse)
-
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: Multiple plasmacytomas
Hi Vortextoo,
You said that "Yes light chains were elevated ratio kappa lambda 16 mg/dl." I'm not sure whether you mean that your kappa-lambda ratio was 16, or if your kappa FLC level was 16 mg/dl. It's really the kappa-lambda ratio that plays a role in deciding whether a myeloma patient with few, if any, symptoms of the disease should be treated.
This article summarizes the new criteria for diagnosis multiple (and MGUS and smoldering myeloma) that were published last year:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
There are one or two places where bone lesions and their role in the diagnosis are discussed. I think Little Monkey was referring to at least some of these criteria in their posting.
Was the decision to have you start treatment made by a myeloma specialist, which would be a hematologist-oncologist who sees primarily myeloma patients? In most countries, such specialists are typically based at cancer centers.
You said that "Yes light chains were elevated ratio kappa lambda 16 mg/dl." I'm not sure whether you mean that your kappa-lambda ratio was 16, or if your kappa FLC level was 16 mg/dl. It's really the kappa-lambda ratio that plays a role in deciding whether a myeloma patient with few, if any, symptoms of the disease should be treated.
This article summarizes the new criteria for diagnosis multiple (and MGUS and smoldering myeloma) that were published last year:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
There are one or two places where bone lesions and their role in the diagnosis are discussed. I think Little Monkey was referring to at least some of these criteria in their posting.
Was the decision to have you start treatment made by a myeloma specialist, which would be a hematologist-oncologist who sees primarily myeloma patients? In most countries, such specialists are typically based at cancer centers.
8 posts
• Page 1 of 1