Hello,
My mother was recently diagnosed with multiple myeloma, based on the results of blood tests, a bone marrow biopsy, and a bone scan.
She has many bone lesions, but they are sclerotic, not lytic. They are small and very widespread. Her doctors have never seen this case before. She has had a full PET/CT scan, and that didn't show anything that would be a source of other bone metastases. She appears to also have small lymphocytic lymphoma (SLL), but the multiple myeloma is a larger concern.
We are trying to learn more about multiple myeloma and sclerotic lesions, especially diffuse lesions. Especially, we want to understand whether these lesions really are a symptom of the multiple myeloma, or possibly indicate something else going on.
She does have a history of autoimmune disease, and we are not sure whether this plays any role here.
Any advice or pointers would be very welcome! Thank you!
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Re: Sclerotic lesions with multiple myeloma
Hi HopefulToo,
Sclerotic multiple myeloma is a pretty rare form of myeloma and a handful of folks on this forum have experienced it. In addition to osteosclerotic myeloma, one would want to eliminate the possibility that this might be a case of POEMS syndrome. However, lymphoma can also cause sclerotic lesions, but I don't know if that is the case with SLL.
If your mother's doctors are unfamiliar with sclerotic plasma cell dyscrasias such as sclerotic multiple myeloma or POEMS, I would really suggest having her seek out a myeloma specialist that has familiarity with these diseases. If you let us know where your mother lives, folks on this forum can likely make some recommendations as to where to find a specialist.
Sclerotic multiple myeloma is a pretty rare form of myeloma and a handful of folks on this forum have experienced it. In addition to osteosclerotic myeloma, one would want to eliminate the possibility that this might be a case of POEMS syndrome. However, lymphoma can also cause sclerotic lesions, but I don't know if that is the case with SLL.
If your mother's doctors are unfamiliar with sclerotic plasma cell dyscrasias such as sclerotic multiple myeloma or POEMS, I would really suggest having her seek out a myeloma specialist that has familiarity with these diseases. If you let us know where your mother lives, folks on this forum can likely make some recommendations as to where to find a specialist.
Last edited by Multibilly on Mon Aug 14, 2017 6:55 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Sclerotic lesions with multiple myeloma
Hi HopefulToo,
Multibilly already has given you some great feedback. You also may want to check out this thread here in the forum,
"Osteosclerotic multiple myeloma" (started Dec 16, 2015)
which was started by DebbieJ54, a forum member who has multiple myeloma with sclerotic lesions. You can view all of Debbie's posts, including her stem cell transplant journal, at this link.
Multibilly already has given you some great feedback. You also may want to check out this thread here in the forum,
"Osteosclerotic multiple myeloma" (started Dec 16, 2015)
which was started by DebbieJ54, a forum member who has multiple myeloma with sclerotic lesions. You can view all of Debbie's posts, including her stem cell transplant journal, at this link.
Re: Sclerotic lesions with multiple myeloma
Thank you for the helpful responses!
My mother lives in eastern Washington State, but she is open to traveling to get a second opinion. In that case, the easiest places would be Seattle or the San Francisco Bay Area, but other places could be considered, too.
My mother lives in eastern Washington State, but she is open to traveling to get a second opinion. In that case, the easiest places would be Seattle or the San Francisco Bay Area, but other places could be considered, too.
Re: Sclerotic lesions with multiple myeloma
Hi HopefulToo,
Fred Hutchinson / Seattle Cancer Care in Seattle would be an obvious place for your mother to go for a consultation. They have a range of hematology-oncology specialists, including myeloma specialists (Dr. Edward Libby, a myeloma specialist at Seattle Cancer Care, answers questions here in the forum frequently).
In the Bay Area, UCSF and Stanford are the usual places you would go for a myeloma specialist.
The Beacon has a list of cancer centers with myeloma specialists here:
https://myelomabeacon.org/resources/treatment-centers/
Best wishes,
Jim
Fred Hutchinson / Seattle Cancer Care in Seattle would be an obvious place for your mother to go for a consultation. They have a range of hematology-oncology specialists, including myeloma specialists (Dr. Edward Libby, a myeloma specialist at Seattle Cancer Care, answers questions here in the forum frequently).
In the Bay Area, UCSF and Stanford are the usual places you would go for a myeloma specialist.
The Beacon has a list of cancer centers with myeloma specialists here:
https://myelomabeacon.org/resources/treatment-centers/
Best wishes,
Jim
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JimNY
Re: Sclerotic lesions with multiple myeloma
I'd second Jim's recommendation of going to the Seattle Cancer Care Alliance and seeing Dr. Libby or one of his colleagues. Seattle would likely be more convenient and closer than going to northern California.
Note that once your mom is properly diagnosed, she can likely continue to be monitored and treated in eastern Washington by a local oncologist working under the guidance of the SCCA (or another group).
Note that once your mom is properly diagnosed, she can likely continue to be monitored and treated in eastern Washington by a local oncologist working under the guidance of the SCCA (or another group).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Sclerotic lesions with multiple myeloma
I found out from my recent spinal MRI I have multiple sclerotic lesions in my thoracic spine, which "are not typical for myeloma" according to my report. This scan was part of my staging for my relapse, which I have just started treatment for. My myeloma doctor said it could be myeloma so the plan is to redo a MRI once my treatment is complete and make sure they go away. Sorry I don't have much more info.
I have standard risk multiple myeloma diagnosed in 2010 with normal cytogenetics (but had it since 2008 misdiagnosed). So I do not have POEMS or any of the other variants.
I have standard risk multiple myeloma diagnosed in 2010 with normal cytogenetics (but had it since 2008 misdiagnosed). So I do not have POEMS or any of the other variants.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Sclerotic lesions with multiple myeloma
In a recent CAT/PT scan, they found one sclerotic lesion on my dad's rib, however it is not active (burning glucose) at this time.
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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
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