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Lymphoplasmacytic Lymphoma that is not WM?
Blood Cancers & Disorders | Last Active: May 4 12:25pm | Replies (38)Comment receiving replies
@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
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@jonyb
I’m glad to meet everyone who has joined this group, as it’s so hard to navigate this disease. None of us needs to feel alone!
My initial symptom was lower than usual hemoglobin in 2022 however, during the pandemic I had donated blood and platelets as often as I could, because they were needed. My primary doc and I thought that my body just needed to recover.
2023 I was experiencing unusual fatigue but my bloodwork wasn’t too bad. Mid 2024 the fatigue was nearly debilitating and we watched my hemoglobin drop from 11 to 8.5 over a three week time period.
Was sent to hematology. An iron transfusion made no difference. Then I got a body xray (initially thought I had Multiple Myeloma), CT, Pet, etc
November 2024 diagnosed with Splenic Marginal Zone Lymphoma.
Since then, after going to Mayo recently, the diagnosis is changed to IgG LPL.
My docs tell me that treatment is indicated if my hemoglobin starts dropping, given that my bone marrow is the main cancer location.
I have fired two docs and think I have a good team in place now. Fingers crossed.
Hang in there!