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DiscussionLymphoplasmacytic Lymphoma that is not WM?
Blood Cancers & Disorders | Last Active: May 4 12:25pm | Replies (38)Comment receiving replies
Replies to "Hello all, especially @jonyb, hope your wife is hanging in there. I got diagnosed about 10..."
@triclonal thanks for your reply. yes it is very complicated. They refuse to treat Anna and refuse to even consider any of her varied symptoms may be related to her LPL. She has seen the UK's best and she wishes she had not as now whatever happens the Consultants just go back to what they said. I actually think they got it wrong and at least one doctor seems agree in my opinion, but he has been overruled. Two Podiatrist seem to disagree with the Neurology expert and Urology has urged further investigation all ignored. A top UK Professor try to help free of charge early on and told me there is no expert in this. Anna's then Haematologist spoke to him and now he is reluctant to speak, he thinks they are doing a good job. Referrals to others are in our opinion incomplete and sometimes incorrect one Professor complained about limited information, but I had sent much of the missing information. I will keep trying but we have run out of routes. Thanks for your reply and I hope your treatment keeps working, yours sounds even rarer than Anna's, bi and tri clonal? now CLL Jon
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@triclonal
Thank you for sharing! I’m glad you are doing well on Zanubrutinib.
It’s so interesting to hear each person’s story. I hope we will continue to share, and support each other.