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Waldenström's Macroglobulinemia

Blood Cancers & Disorders | Last Active: May 25 10:40pm | Replies (135)

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@newwaldenguy

Just diagnosed with WM. Anyone on oral chemotherapy?

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Replies to "Just diagnosed with WM. Anyone on oral chemotherapy?"

I've been on oral chemo for a couple of years. Currently taking 2 capsules in morning and 2 capsules in evening of zanubrutinib. What treatment are you considering? You may wish to consider checking out the resources provided by the IWMF at IWMF.com. also you can communicate directly with thousands of folks affected by WM via their online discussion list ( https://iwmf.com/iwmf-connect-and-online-discussion-forums/) and their closed Facebook group - see https://www.facebook.com/groups/wmsupportgroup/?ref=share

Hello I’m Ben I’m 36 I live in Australia I was diagnosed in 2021 I had rash/sores on my lower legs and local doctor prescribed penicillin for 7 months before going to another doctor who done blood tests and swabbed me thankfully I feel I’m getting lied to I was stage 4 upon diagnosis and had plasma exchange 3 times to bring it down to get a proper reading I have severe pain in my stomach area and there not showing me my X-rays but I had a lot of growths and now there held back from me

Yes, I was diagnosed in Aug. 2022, underwent 12 infusions with retuxin and several IVIG . I'm now on Zanubrutinib 160mg twice daily, since Feb. 15 2023. Oncologist is looking at blood work every 2 weeks for improvement.