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Re: Nervous - high-risk smoldering multiple myeloma?
Yes, I have seen a neurologist. I have peripheral neuropathy and damage to the nerves in my elbow but no damage coming from the neck. It seems like an immflamatory response. I break out in sweats, fevers, fatigue, flushing, rashes. I have seen rheumatologist and internal medicine as well. I was not sick at all before a few years ago. I think paraneoplastic syndrome is just a thought at this point.
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
Hello,
I'm sorry for your obvious pain and discomfort. It sounds to me as though your oncologist is on to something with the paraneoplastic response to your myeloma. I know someone with myeloma who had 30% plasma cells in the marrow and a small M-spike and had a paraneoplastic response and her symptoms were much like your own - fevers, neuropathy. The specialist at DFCI treated the underlying myeloma and she is better now.
Here is a quote from a an article on this topic indicating that this is most common with cancers that affect the immune system. I often thought I had something like this as well because IVIG really helps my symptoms of smoldering myeloma that we are not suppose to have:)
"Finding an associated neoplasm can support the diagnosis of a PND, but as noted above, in most patients the PND precedes the cancer diagnosis. The tumors more frequently associated with PNDs are those that express neuroendocrine proteins, such as small-cell lung cancer (SCLC) or neuroblastoma, those that affect organs with immunoregulatory functions (thymoma), and those that are derived from cells that produce immunoglobulins (plasma cell dyscrasias, B-cell lymphomas)"
Here is the link to the page with full text:
Rosenfeld, M.R. and Dalmau, J. "Update on Paraneoplastic Neurologic Disorders," The Oncologist, May 2010 (full text of article)
Best
J
I'm sorry for your obvious pain and discomfort. It sounds to me as though your oncologist is on to something with the paraneoplastic response to your myeloma. I know someone with myeloma who had 30% plasma cells in the marrow and a small M-spike and had a paraneoplastic response and her symptoms were much like your own - fevers, neuropathy. The specialist at DFCI treated the underlying myeloma and she is better now.
Here is a quote from a an article on this topic indicating that this is most common with cancers that affect the immune system. I often thought I had something like this as well because IVIG really helps my symptoms of smoldering myeloma that we are not suppose to have:)
"Finding an associated neoplasm can support the diagnosis of a PND, but as noted above, in most patients the PND precedes the cancer diagnosis. The tumors more frequently associated with PNDs are those that express neuroendocrine proteins, such as small-cell lung cancer (SCLC) or neuroblastoma, those that affect organs with immunoregulatory functions (thymoma), and those that are derived from cells that produce immunoglobulins (plasma cell dyscrasias, B-cell lymphomas)"
Here is the link to the page with full text:
Rosenfeld, M.R. and Dalmau, J. "Update on Paraneoplastic Neurologic Disorders," The Oncologist, May 2010 (full text of article)
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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