Howdy,
I last wrote in the forum a couple of months back (link to thread), where I discussed being diagnosed with MGUS with IgG kappa type with a 14.9 g/L (1.49 g/dL) monoclonal spike, with a normal 1.09 sFLC [serum free light chain] ratio.
But after pushing back to my GP with symptoms of sore back and hips, we found with that my bone density was low. My ferritin is also chronically low now at 6 ug.
So I waited a month to see a specialist and had a MRI pelvis/spine and a bone marrow biopsy (BMB). The BMB came back at normal at 3% on my left hip. The MRI, however, showed a moderately large lesion on the ilium of the pelvis, which has just been biopsied under CT guidance yesterday. I read the MRI report which stated 3 options for cause: myeloma / plasmacytoma / lymphoma metastases.
So all pretty scary for a mother in her 40's with 3 school aged children. I am seeing the haematologist this week to discuss the results and where to from here. I have so many questions and am frustrated with the lack of data on single (solitary) bone plasmacytoma (SBP), the majority of it very negative.
So I have some questions, firstly because of my age, is radiation treatment enough? Will they just wait until I get myeloma to get the big guns out? Is surgery an option and if so how do they know it will work? Because this is not very common how do I know I will be getting the best treatment.
This is very emotional for me, as I was young when my own mother died and I swore I would not do this to my kids.
I would appreciate anyone's experience with this and when I see my specialists this week, what should I be asking?
Suzanne
Forums
6 posts
• Page 1 of 1
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KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: Solitary bone plasmacytoma (hopefully)
Hi Suzanne,
We're glad to hear that you're getting some clarity about what exactly your diagnosis is, although – like you – we wish the new information was a bit different than what it turned out to be.
There is a detailed review article about single (solitary) bone plasmacytomas here at The Beacon which you may have seen. If not, we would suggest that you read it at some point.
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012.
You may find that it addresses a lot of the questions that you've raised. If not, just let us know.
We're glad to hear that you're getting some clarity about what exactly your diagnosis is, although – like you – we wish the new information was a bit different than what it turned out to be.
There is a detailed review article about single (solitary) bone plasmacytomas here at The Beacon which you may have seen. If not, we would suggest that you read it at some point.
"Solitary Bone Plasmacytoma – What Every Patient Should Know," The Myeloma Beacon, May 4, 2012.
You may find that it addresses a lot of the questions that you've raised. If not, just let us know.
Re: Solitary bone plasmacytoma (hopefully)
Dear Suzanne,
I am so sorry to hear you are going through this, but I am glad you have undergone a biopsy already. That was the right thing to do.
If clonal plasma cells are seen on the biopsy, you will need additional work-up to distinguish solitary plasmacytoma of bone from multiple myeloma. I would consider repeating your original myeloma labs (blood work, 24-hour urine testing) to see if there has been a change since diagnosis of MGUS. The serum free light chain testing should also be repeated - a normal result with solitary plasmacytoma of bone is a good prognostic finding.
I would also want to know if the plasma cells in your original bone marrow were clonal or polyclonal. This may have been evaluated by immunohistochemistry or flow cytometry (preferably the latter). If that was not done, it would be worthwhile investigating if that type of analysis could be done on a repeat biopsy. Trace levels of clonal plasma cells on a bone marrow biopsy are predictive of solitary plasmacytoma evolving into multiple myeloma.
Lastly, additional imaging to look for other lesions would be important, which may include a skeletal survey (if not already recently done), whole body PET-CT, and/or more comprehensive MRI including the entire spine. If additional bone lesions were identified, a diagnosis of multiple myeloma as opposed to solitary plasmacytoma of bone would be more appropriate. Realize that this evaluation is predicated on the biopsy results showing clonal plasma cells. If lymphoma or other disease is identified, the work-up may be a bit different.
Solitary plasmacytoma of bone is most often treated with radiation therapy. Surgical resection is often not possible or would be highly morbid. Based on the location of this thing, I do not think surgery would be appropriate.
Chemotherapy is not used. However, we are beginning to better predict those patients at higher risk of progression to myeloma and those that are less likely to do so (clonal plasma cells on bone marrow biopsy, abnormal serum free light chains or urine light chains). As such, you will see studies emerge looking at whether early intervention with chemotherapy reduces the risk of transition to multiple myeloma.
Outside of a study, I would not pursue chemotherapy for solitary plasmacytoma. In my experience, there can be a long latency from the diagnosis of solitary plasmacytoma of bone to myeloma, if it occurs at all. The therapy for myeloma is quite good now. It is only getting better and worth holding out for under the right circumstances.
You will do well. Best wishes!
Pete V.
I am so sorry to hear you are going through this, but I am glad you have undergone a biopsy already. That was the right thing to do.
If clonal plasma cells are seen on the biopsy, you will need additional work-up to distinguish solitary plasmacytoma of bone from multiple myeloma. I would consider repeating your original myeloma labs (blood work, 24-hour urine testing) to see if there has been a change since diagnosis of MGUS. The serum free light chain testing should also be repeated - a normal result with solitary plasmacytoma of bone is a good prognostic finding.
I would also want to know if the plasma cells in your original bone marrow were clonal or polyclonal. This may have been evaluated by immunohistochemistry or flow cytometry (preferably the latter). If that was not done, it would be worthwhile investigating if that type of analysis could be done on a repeat biopsy. Trace levels of clonal plasma cells on a bone marrow biopsy are predictive of solitary plasmacytoma evolving into multiple myeloma.
Lastly, additional imaging to look for other lesions would be important, which may include a skeletal survey (if not already recently done), whole body PET-CT, and/or more comprehensive MRI including the entire spine. If additional bone lesions were identified, a diagnosis of multiple myeloma as opposed to solitary plasmacytoma of bone would be more appropriate. Realize that this evaluation is predicated on the biopsy results showing clonal plasma cells. If lymphoma or other disease is identified, the work-up may be a bit different.
Solitary plasmacytoma of bone is most often treated with radiation therapy. Surgical resection is often not possible or would be highly morbid. Based on the location of this thing, I do not think surgery would be appropriate.
Chemotherapy is not used. However, we are beginning to better predict those patients at higher risk of progression to myeloma and those that are less likely to do so (clonal plasma cells on bone marrow biopsy, abnormal serum free light chains or urine light chains). As such, you will see studies emerge looking at whether early intervention with chemotherapy reduces the risk of transition to multiple myeloma.
Outside of a study, I would not pursue chemotherapy for solitary plasmacytoma. In my experience, there can be a long latency from the diagnosis of solitary plasmacytoma of bone to myeloma, if it occurs at all. The therapy for myeloma is quite good now. It is only getting better and worth holding out for under the right circumstances.
You will do well. Best wishes!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Solitary bone plasmacytoma (hopefully)
Thank you so much for your reply and your expertise. I really appreciate your input.
I will need to ask my specialist about the clonal cells from the BMB, but I have a feeling that because it was normal, they did not carry out further testing. I should have had the MRI first. I wonder if they can do this now, if they didn't do it originally? If not, should I be asking for a repeat BMB on my unaffected hip?
One thing that worries me is getting osteoarthritis from the radiotherapy and it probably putting me into menopause. Is there something or a medication that we should be looking at now? I am, kinda was, really a fit and healthy person prior to this, with no previous health issues at all.
Thank you
Suzanne
I will need to ask my specialist about the clonal cells from the BMB, but I have a feeling that because it was normal, they did not carry out further testing. I should have had the MRI first. I wonder if they can do this now, if they didn't do it originally? If not, should I be asking for a repeat BMB on my unaffected hip?
One thing that worries me is getting osteoarthritis from the radiotherapy and it probably putting me into menopause. Is there something or a medication that we should be looking at now? I am, kinda was, really a fit and healthy person prior to this, with no previous health issues at all.
Thank you
Suzanne
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KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: Solitary bone plasmacytoma (hopefully)
I suspect the radiation field would be relatively small and would likely not lead to menopause. This is definitely something to discuss with a radiation oncologist.
Similarly, I doubt that the dose used would lead to clinically significant problems with arthritis.
Good luck!
Pete V.
Similarly, I doubt that the dose used would lead to clinically significant problems with arthritis.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Solitary bone plasmacytoma (hopefully)
That is positive news thank you. I will keep you posted.
Suzanne
Suzanne
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KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
6 posts
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