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Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?

Posted by teachpeace @teachpeace, Sep 29, 2024

My dad has had this diagnosis for years. He is 86 years old. He Was treated with “infusions” forever…idk the name of med. Recently however..a new oncologist prescribed zanubrutinib…2pills twice per day. I believe the highest dose but I could be wrong.
After 1.5 weeks my dad couldn’t tolerate the side effects any longer. He lost his appetite, a significant amount of weight, he had Chills, and extreme fatigue.
Doc has since taken my dad off the meds and will see him next week.
Soooo…..does anyone have any experience with a similar situation? Thank you in advance
Am I crazy to request he go back on the infusions?

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carrnv42 | @carrnv42 | 51 minutes ago
In reply to @champ9810 "Yes, I have WM, and I am taking Brukinsa, along with an antibiotic and antiviral prevention..." + (show)
Profile picture for champ9810 @champ9810

Yes, I have WM, and I am taking Brukinsa, along with an antibiotic and antiviral prevention meds. While I have some of the same symptoms you mention, the only side-effect I think that is related to Brukinsa is bruising easily. The neuropathy is associated with WM, while others, such as energy and fatigue, are less significant and, I believe, more indicative of my age. I make a point of exercising routinely as well. I was diagnosed with WM nearly two years ago, and only since June have I been on the Brukinsa regimen. My blood chemistry is showing remarkable improvement with Brukinsa—all the best to my fellow patients who are dealing with WM, its impact on our daily lives, and the related meds. Thank you for sharing your WM journey. It is helpful.

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@champ9810 thank you.

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