← Return to Waldrenstrom macroglobulinemia: Anyone on zanubrutinib?

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@michaelah

Hi @teachpeace I have Waldenström's for 2 1/2 years getting regular infusions but my neuropathy kept getting worse, so my oncologist put me on zanubrutinib as well. three months now and my neuropathy is finally getting better - I can curl my toes again!. My side effects are fatigue and bleeding under the skin of my arm - looks like a bad bruise. I am sorry your father is getting a worse reaction. I did get an anti-nausea pills in my mix that I need sometimes. I am very happy with my progress but will be happy to get off the meds.

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Replies to "Hi @teachpeace I have Waldenström's for 2 1/2 years getting regular infusions but my neuropathy kept..."

Thankful Zanu is improving your PN. Please keep in mind that Zanubrutinib is not a treatment you can just stop when your symptoms are gone. I strongly recommend contacting the IWMF for direction regarding Zanubrutinib on the HELPLINE
WM is a rare blood cancer and the diagnosis and treatments recommended by the WM specialists, change based upon the individual patient, mutations, etc.
May you continue to do well on Zanu and thank you for taking time to share your personal experience.