Just as Multibilly, I am baffled by this as well.
Tsukuba, are you able to pursue a second opinion?
For others from the Beacon: can you have a solitary extramedullary plasmacytoma without an M-spike and with no plasma cell dyscrasia findings in the bone marrow?
If this is the case Tsukaba, and I am actually asking other posters here to review, then you could have a very isolated case which can be successfully treated. There are two types of plasmacytomas: those that occur on the bone and those that occur outside of the bone,. The latter type is called an extramedullary plastocytoma. Although 80% of these occur in the sinuses and respiratory areas, the remainder are in other areas, including the intestine.
I hope you can get some answers and the help you need.
All the best,
Toni
Forums
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Do my test results indicate MGUS or myeloma?
Hi Tsukuba82,
Given the results that you've reported, I suspect your doctors believe you have what is known as an "extramedullary plasmacytoma" (a plasma tumor outside of the bone) in your colon. Wikipedia has an informative article about plasmacytomas,
http://en.wikipedia.org/wiki/Plasmacytoma
The doctor who wants to treat you with Revlimid and have you do a stem cell transplant probably is concerned that the myeloma cells may be in more parts of your body than just the tumor in your colon. This concern is most likely based on the fact that you have some signs of a monoclonal protein in your blood work, as also evidenced by your slightly elevated kappa free light chains (21.7 mg/L, which is just about the reference range of 3.3 to 19.4 mg/L).
If your blood tests showed absolutely no signs of myeloma, the doctor might have recommended simply removing the tumor and/or treating it with radiation, if that's even possible. (I'm not a doctor, so I don't know.)
If I were you and I didn't have any other information or feedback to go on, I would go up to Johns Hopkins or down to UNC Chapel Hill or Duke, and have my test results reviewed by a myeloma specialist at one of those institutions.
If the recommendation then came back that treatment in fact should be started, I suspect I would ask whether it also would make sense to surgically remove and/or irradiate the tumor in your colon. If you're going to be cautious, why not be extra-cautious?
Given the results that you've reported, I suspect your doctors believe you have what is known as an "extramedullary plasmacytoma" (a plasma tumor outside of the bone) in your colon. Wikipedia has an informative article about plasmacytomas,
http://en.wikipedia.org/wiki/Plasmacytoma
The doctor who wants to treat you with Revlimid and have you do a stem cell transplant probably is concerned that the myeloma cells may be in more parts of your body than just the tumor in your colon. This concern is most likely based on the fact that you have some signs of a monoclonal protein in your blood work, as also evidenced by your slightly elevated kappa free light chains (21.7 mg/L, which is just about the reference range of 3.3 to 19.4 mg/L).
If your blood tests showed absolutely no signs of myeloma, the doctor might have recommended simply removing the tumor and/or treating it with radiation, if that's even possible. (I'm not a doctor, so I don't know.)
If I were you and I didn't have any other information or feedback to go on, I would go up to Johns Hopkins or down to UNC Chapel Hill or Duke, and have my test results reviewed by a myeloma specialist at one of those institutions.
If the recommendation then came back that treatment in fact should be started, I suspect I would ask whether it also would make sense to surgically remove and/or irradiate the tumor in your colon. If you're going to be cautious, why not be extra-cautious?
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JimNY
Re: Do my test results indicate MGUS or myeloma?
There's wisdom in what Jim says here. If there are any other tumors present in your body, they will "light up" on a PET/CT ... if they are cancerous.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do my test results indicate MGUS or myeloma?
Toni correctly points out that, with a negative immunofixation, a monoclonal process is unlikley. There are some limitations to the protein electrophoresis and even the immunofixation, particularly with chronic inflammatory conditions, which the colitis would certainly be.
My hunch is that the cells seen in the colon are not clonal plasma cells from multiple myeloma, but this will be tough to determine from afar.
The PET scan isn't a bad idea, but I probably would not rush into therapy until there is more definitive evidence that therapy is needed.
My hunch is that the cells seen in the colon are not clonal plasma cells from multiple myeloma, but this will be tough to determine from afar.
The PET scan isn't a bad idea, but I probably would not rush into therapy until there is more definitive evidence that therapy is needed.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Do my test results indicate MGUS or myeloma?
I appreciate all the help!
Since I have very severe colitis and none of the traditional meds worked for me and the ones that are left can lead to such diseases as lymphomas / myelomas, I was planning on getting my colon removed anyways.
I guess I will do the PET on Monday and see what comes of it.
Since I have very severe colitis and none of the traditional meds worked for me and the ones that are left can lead to such diseases as lymphomas / myelomas, I was planning on getting my colon removed anyways.
I guess I will do the PET on Monday and see what comes of it.
Re: Do my test results indicate MGUS or myeloma?
Tsukuba - I'm sorry to hear you have such severe colitis. I have a friend who recently had surgery (two separate surgeries) to remove the intestine and she is so very much better. She's grateful she did it, even though the surgery is tough.
Wishing you all the best!
Wishing you all the best!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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