Hi,
I was wondering if anyone has had treatment for extremedullary plasmacytoma, or has any information.
I had my left 5th rib removed in March as it was unstable due to the damage from a plasmacytoma.
In August a PET CT scan showed a 2x3 cm mass in the tissue surrounding the rib are, along with new lytic lesions on the sternum, sacrum and T1.
All the while my M-pike was fine and only minimal Bence Jones present in my urine; my second bone marrow biopsy showed only 6% involvement.
Just wondering how all markers can be so low with such aggressive bone activity. It seems to have my oncs scratching their heads too.
Forums
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Extramedullary plasmacytoma
There is definitely, clearly defined, an entity known as "non-secretory" myeloma. It's truly myeloma with the same prognosis and treatment options, but the cells don't produce light chains, so there are no Bence Jones proteins, no or minimal M-spike, and usually normal serum free light chains. I have it. It's fairly rare- only about 5% of myeloma patients are non-secretory.
Are your oncologists myeloma experts? Because they should know about non-secretory myeloma if they are.
So, what is the next step in your plan, given all these new findings?
Good luck!
Are your oncologists myeloma experts? Because they should know about non-secretory myeloma if they are.
So, what is the next step in your plan, given all these new findings?
Good luck!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Extramedullary plasmacytoma
Hey Stu,
you are somewhat in the same boat as my dad, no real M-spike, a k/l ratio reading of 2.55, but with bone plasmacytoma instead (surgically removed), and possibly two more lesions caught by the PET scan; and ya, my dad's Haematologist does scratch her head and is looking to a myeloma specialist in Toronto for any opinion and direction, as it is a bit of an odd ball on how to go forward.
you are somewhat in the same boat as my dad, no real M-spike, a k/l ratio reading of 2.55, but with bone plasmacytoma instead (surgically removed), and possibly two more lesions caught by the PET scan; and ya, my dad's Haematologist does scratch her head and is looking to a myeloma specialist in Toronto for any opinion and direction, as it is a bit of an odd ball on how to go forward.
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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: Extramedullary plasmacytoma
Hi Stu,
I agree with Tracy. A doctor should not be scratching their head over this kind of a finding if they are a specialist in multiple myeloma. There are some other Aussies on this site that might be able to point you to the specialists that they utilize.
The bummer with non-secretory multiple myeloma is that you have to track it with bone marrow biopsies and/or PET/CTs instead of simple lab tests.
I agree with Tracy. A doctor should not be scratching their head over this kind of a finding if they are a specialist in multiple myeloma. There are some other Aussies on this site that might be able to point you to the specialists that they utilize.
The bummer with non-secretory multiple myeloma is that you have to track it with bone marrow biopsies and/or PET/CTs instead of simple lab tests.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Extramedullary plasmacytoma
Is it possible that stu1975's doctors are "scratching their heads" because he does have markers for secretory multiple myeloma, these markers indicate minimal disease, and yet there seems to be aggressive bone destruction.
The issue may not be his onc's unfamiliarity with nonsecretory myeloma, but rather the potential presence of both secretory and nonsecretory myeloma.
I asked my oncologist about the odds for this happening, and he told me they were comparable to those for an extinction-level asteroid impact with the Earth.
But is that really true, given all of the recent talk among myeloma experts of multiple clones fostered in a given patient by Darwinian mechanisms of mutation and survival?
So, could it be possible that following a given marker for one type of myeloma may miss another type that may be active in the same patient?
The issue may not be his onc's unfamiliarity with nonsecretory myeloma, but rather the potential presence of both secretory and nonsecretory myeloma.
I asked my oncologist about the odds for this happening, and he told me they were comparable to those for an extinction-level asteroid impact with the Earth.
But is that really true, given all of the recent talk among myeloma experts of multiple clones fostered in a given patient by Darwinian mechanisms of mutation and survival?
So, could it be possible that following a given marker for one type of myeloma may miss another type that may be active in the same patient?
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Extramedullary plasmacytoma
Mr PH,
There is an entire continuum of multiple myeloma disease presentations that range from secretory to true nonsecretory. If one is not truly nonsecretory and instead secretes a smaller amount of paraprotein and/or FLCs than would be expected given a particular bone marrow plasma percentage (BMPC) reading, then one is considered to be oligosecretory.
Also, a BMPC measurement is a hit-and-miss affair given how non-uniformly the disease is spread throughout one's skeleton. So, a 6% BMPC could be totally off from what might show up in a subsequent BMB or from what the true disease burden really is.
In other words, one doesn't have to have an "extinction-level" event such as the presence of two distinct diseases (nonsecretory and secretory), for one to have a mismatch between the BMPC and serum and urine markers.
There is an entire continuum of multiple myeloma disease presentations that range from secretory to true nonsecretory. If one is not truly nonsecretory and instead secretes a smaller amount of paraprotein and/or FLCs than would be expected given a particular bone marrow plasma percentage (BMPC) reading, then one is considered to be oligosecretory.
Also, a BMPC measurement is a hit-and-miss affair given how non-uniformly the disease is spread throughout one's skeleton. So, a 6% BMPC could be totally off from what might show up in a subsequent BMB or from what the true disease burden really is.
In other words, one doesn't have to have an "extinction-level" event such as the presence of two distinct diseases (nonsecretory and secretory), for one to have a mismatch between the BMPC and serum and urine markers.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Extramedullary plasmacytoma
I was just about to write almost exactly what Multibilly wrote. Myeloma can range from nonsecretory on the one extreme to disease marked by high M-spikes on the other extreme. And the disease can be patchy, so bone marrow biopsies are not perfect reflections of how extensive the disease is.
Stu - You say that your "my M-pike was fine and only minimal Bence Jones present in my urine". Do you have any M-spike at all at this point? Also, what are your serum free light chain levels and ratio?
I also would second the recommendation that you see a myeloma specialist, if you're not already under the care of one. I realize this may be difficult for you to do that at this point, given that you're scheduled soon for a stem cell transplant. But it might be worth setting the wheels in motion now, so you can meet with the specialist after your transplant. There are 4 or 5 myeloma specialists in Australia listed in this list of leading international myeloma specialists:
https://myelomabeacon.org/forum/international-myeloma-working-group-imwg-members-t3514.html
Good luck!
Stu - You say that your "my M-pike was fine and only minimal Bence Jones present in my urine". Do you have any M-spike at all at this point? Also, what are your serum free light chain levels and ratio?
I also would second the recommendation that you see a myeloma specialist, if you're not already under the care of one. I realize this may be difficult for you to do that at this point, given that you're scheduled soon for a stem cell transplant. But it might be worth setting the wheels in motion now, so you can meet with the specialist after your transplant. There are 4 or 5 myeloma specialists in Australia listed in this list of leading international myeloma specialists:
https://myelomabeacon.org/forum/international-myeloma-working-group-imwg-members-t3514.html
Good luck!
Re: Extramedullary plasmacytoma
Thank you for the clarification, Multibilly.
So is it then the case that the most accurate way to track the progression of multiple myeloma is through a PET/CT whole body scan? Since that test images the whole body in a way that obviates the need to figure out which other markers are misleading and/or inapplicable.
The advice you and TerryH gave Stu is excellent, by the way. I have been warned off PET/CT scans because of the dangers of the higher dose of radiation they expose you to - up to 25 times that of a simple x-ray bone survey.
Still, if a PET/CT is indicated for the reasons mentioned, it should be done in my opinion. But the caveat here, for any individual, is to consult with a qualified doctor, and seeking out a myeloma specialist in particular for these kinds of calls is important.
So is it then the case that the most accurate way to track the progression of multiple myeloma is through a PET/CT whole body scan? Since that test images the whole body in a way that obviates the need to figure out which other markers are misleading and/or inapplicable.
The advice you and TerryH gave Stu is excellent, by the way. I have been warned off PET/CT scans because of the dangers of the higher dose of radiation they expose you to - up to 25 times that of a simple x-ray bone survey.
Still, if a PET/CT is indicated for the reasons mentioned, it should be done in my opinion. But the caveat here, for any individual, is to consult with a qualified doctor, and seeking out a myeloma specialist in particular for these kinds of calls is important.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Extramedullary plasmacytoma
PH,
The risk of radiation exposure from PET/CT is real and doctors should be judicious in recommending their use. Therefore, I always think long and hard before requesting one or following through on my doc's orders.
Utilizing whole body MRIs is also another option for tracking non-secretory patients, but my state has none of those machines.
On the other hand, I'm one of those guys that could have a BMB without sedation every month and not think twice about it. So, if I were non-secretory, I would lean more towards using BMBs to track my disease with only an occasional PET/CT.
In any case, these are a couple of good threads on the subject:
https://myelomabeacon.org/forum/tracking-nonsecretory-multiple-myeloma-response-to-therapy-t155.html#p430
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
If you are still having second thoughts about your doc's recommendation wrt not getting a PET/CT, why don't you seek a second opinion from the doc I mentioned before?
The risk of radiation exposure from PET/CT is real and doctors should be judicious in recommending their use. Therefore, I always think long and hard before requesting one or following through on my doc's orders.
Utilizing whole body MRIs is also another option for tracking non-secretory patients, but my state has none of those machines.
On the other hand, I'm one of those guys that could have a BMB without sedation every month and not think twice about it. So, if I were non-secretory, I would lean more towards using BMBs to track my disease with only an occasional PET/CT.
In any case, these are a couple of good threads on the subject:
https://myelomabeacon.org/forum/tracking-nonsecretory-multiple-myeloma-response-to-therapy-t155.html#p430
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
If you are still having second thoughts about your doc's recommendation wrt not getting a PET/CT, why don't you seek a second opinion from the doc I mentioned before?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Extramedullary plasmacytoma
Hello, I am one of those weird fully nonsecretory patients. I show 0000 m spike and no other indicators. I came to this from back pain. Initially diagnosed as a singular plasmacytoma and NOT multiple myeloma from a group of 5 different doctors. The plasmacytoma came off easily with radiation but the back damage was severe.
Upon further review, a bone marrow biopsy found almost 20% myeloma cells, so I did the Revlimid, Velcade, and dex for 4 cycles, and it did help some, then I did the transplant. After the transplant the first test was MRI, then PET. Both were completely clean, but my bone marrow biopsy showed 5% bad cells still (and she was absolutely sure it would be MRD 0).
Upon closer look, my expert decided what we had were MGUS cells that were not dividing or causing issues, so no further attempt was made to get me into full remission, just maintenance now with Revlimid for 3 years and nothing has changed. At the time she told me if I walked into her office that day for the first time, I would not be diagnosed with cancer, it would be MGUS.
Three years post transplant I just had my first full body MRI (head to toe in 30 minutes or less). They did notice a lesion never told to me before, but it was dark, small, and not doing anything. There were also still bad cells, but still MGUS cells, just hanging out and not dividing, as is the opinion of 2 top myeloma specialists.
I say all this because you just never know, to have nonsecretory multiple myeloma and to also have reverted to MGUS is pretty freaking weird but I feel fine, don't get sick, have most my energy, work full time and travel, so I'll take it. If this evolves back to multiple myeloma, we will probably have another transplant, but that depends on how long this holds. So much has changed in the past 4 years, who knows what the future holds, everyone says we are very close to a more significant breakthrough on the road to making our disease chronic at least. HOLD ON!
Upon further review, a bone marrow biopsy found almost 20% myeloma cells, so I did the Revlimid, Velcade, and dex for 4 cycles, and it did help some, then I did the transplant. After the transplant the first test was MRI, then PET. Both were completely clean, but my bone marrow biopsy showed 5% bad cells still (and she was absolutely sure it would be MRD 0).
Upon closer look, my expert decided what we had were MGUS cells that were not dividing or causing issues, so no further attempt was made to get me into full remission, just maintenance now with Revlimid for 3 years and nothing has changed. At the time she told me if I walked into her office that day for the first time, I would not be diagnosed with cancer, it would be MGUS.
Three years post transplant I just had my first full body MRI (head to toe in 30 minutes or less). They did notice a lesion never told to me before, but it was dark, small, and not doing anything. There were also still bad cells, but still MGUS cells, just hanging out and not dividing, as is the opinion of 2 top myeloma specialists.
I say all this because you just never know, to have nonsecretory multiple myeloma and to also have reverted to MGUS is pretty freaking weird but I feel fine, don't get sick, have most my energy, work full time and travel, so I'll take it. If this evolves back to multiple myeloma, we will probably have another transplant, but that depends on how long this holds. So much has changed in the past 4 years, who knows what the future holds, everyone says we are very close to a more significant breakthrough on the road to making our disease chronic at least. HOLD ON!
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Bluemountain
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