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Lymphoplasmacytic Lymphoma that is not WM?
Blood Cancers & Disorders | Last Active: May 4 12:25pm | Replies (38)Comment receiving replies
@jonyb
I can only imagine the frustration. My heart hurts for your wife, and you. It’s also difficult in the U.S. to find any studies and/or clinical trials for non IgM LPL.
I started with Rituximab by itself- the least toxic first line of treatment. I have not had any neuropathy pre/post treatment.
I wonder if high Kappa vs high Lambda light chain makes a difference in neuropathy? Or the MYD88 Wild mutation vs non Wild.
So many questions which are hopefully being addressed in the labs.
Keep advocating for your wife. Sending strength!
Replies to "@jonyb I can only imagine the frustration. My heart hurts for your wife, and you. It’s..."
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@monicalu2626 Thanks for your reply Monica, yes having Wild Type rather than the L265P mutation is not a good sign generally but Anna has a very bright CD20, so CD20++ so Rituximab should work well. So what were your symptoms to start treatment if not neuropathy?
The problem is that Haematology in the UK will not investigate Anna's symptoms and Neurology has been very bad. The UK expert even warned us about going to the States for a diagnosis as she inferred that they may just tell us treatment is required just to get our money for treatment. We can't afford treatment in the USA anyway but were considering coming for diagnosis only. However Dana Faber never replied when I tried to get a quote. LPL IgG is so ignored the World over. Thanks again so much for replying we don't feel so alone now. Jon