Essential Thrombocythaemia with Concomitant Waldenström Macroglobulinaemia

G’Day to all.
I am 80 years old next September and live in Melbourne AUS
In late 2021 I was diagnosed with Essential thrombocythemia (ET). and started a course of HYDREA 500mg tablets in Feb 2022 in Dec 2022 I had a Bone Marrow Biopsy that showed I now have Waldenström macroglobulinaemia (WM) .
I believe to have both is very RARE, can any body please tell me if you know of any other person with both who I can discus our problems ??
My Haematologist is very GOOD but as he said because our population it very small we do no
see a lot of people with Waldenström macroglobulinaemia (WM).
Very Kind Regards
Keith DAWS

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Hi Keith, hopefully someone on this forum may have experience of both Essential thrombocythemia (ET) and Waldenström macroglobulinaemia (WM), as you say it probably is very unusual to have both. I don’t know if you are on Facebook , but there is a very active Waldenström macroglobulinaemia (WM) group “International Waldenstrom Macroglobulinemia Foundation” (I belong to that site) where it might also be worth posting your question (it’s primarily a US Waldenström macroglobulinaemia (WM) audience but lots of other nationalities on it too). They also have a website www.iwmf.com (there is a UK only group and charity but it’s much smaller )

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Hi @kwDAWS @CaroleCW has given you a great response.
I hope others can help as well.
Yes, we are a UK forum so treatments, drugs etc might be different with your diagnosis.
I am so glad that your haematologist is so good, it certainly makes a difference.
Take care of yourself

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