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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Jan 1 2:01am | Replies (172)Comment receiving replies
I am convinced neuropathy can be related to free light chains and antibodies(in my case igM) . In 2016 I was in horrible pain from neuropathy and went to a neurologist for help. After months of tests this doc sent me to oncologist who diagnosed MGUS and chronic leukemia. I was in wait/watch for 6 or so months and oncologist decided to try rituxan to treat the CLL. Later I found he suspicioned the rituxan would help alleviate neuropathy, and it did.
A year or so later acute leukemia(APL) kicked in and I was treated with arsenic for 8 months until remission . I still have quarterly visits for MGUS and CLLwith leukemia and lymphoma centers. When the free kappa and the igM start climbing, so does the neuropathy. I had another series of rituxan treatments about 15 months back . Free kappa and igMs were reduced and I have been neuropathy pain free since.
I sympathize with you not being to get definitive answers to your issues. Seems oncologists don't take MGUS serious until one approaches full blown MM. What I do know is a cancer patient, or their handlers, have to proactive to get results.
I enrolled in a clinical trial(Clinical Trials.gov I.D @ NCT02726750) conducted by MD Anderson attempting to determine the MGUS markers that may predict the progression of MGUS to MM. For me this is another layer of defense as I am getting additional tests and another set of docs following my MGUS.
Hang tough and best of luck.
Replies to "I am convinced neuropathy can be related to free light chains and antibodies(in my case igM)..."
I forgot to mention , in my struggle with neuropathy prior to cancer diagnosis, I did many sessions of plasmapheresis, plasma exchange. The neurologist explained many of the bad actors are in the blood plasma. The treatment was of relief, though temporary.
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Hi, @2012can - I'm so glad that you were able to get your neuropathy and other blood conditions under control!
I've been reading about various monoclonal gammopathies and, indeed, IgM is notorious for causing neuropathy.
Mine is a little different... it's JUST kappa light chains with no large (IgA, IgG, IgM) immunoglobulins. There's no M-spike. As far as MGUS potentially developing into MM goes, this is a lucky break. I'm on the low-risk side of things. But I'm not sure about potential development into AL amyloidosis, nor how risk factors for that development are identified. My genetic mutation and abnormal plasma cell level are somewhat in line with AL, if not bad for MM. And AL can also affect nerves. I'm not quite ready to do a sural nerve biopsy, however.
I've had a weird inflammatory situation for several months where I'm having repeated low fevers with sweating. The "fevers" aren't high enough to mean much clinically, I guess, but it just seems like my immune system is trying to fight something, maybe circulating or depositing kappa free light chains in the absence of amyloids. Just my hunch.
The idea of finding a clinical trial is really good. I'm glad you were able to find another strategy and set of docs for addressing your blood disorders. You are right that we have to actively pursue solutions. I'll keep looking for a trial that might fit my situation. Thanks!