Waldrenstrom macroglobulinemia: Anyone on zanubrutinib?

Posted by teachpeace @teachpeace, Sep 29 11:47am

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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Colleen Young, Connect Director | @colleenyoung | Oct 18 8:41pm

In reply to @gigigatta "I am 72 years old and am on zanubrutinib for 3 months after a diagnosis of..." + (show)

So helpful, @gigigatta. Thank you.

Are you taking zanubrutinib for relapsed mantle cell lymphoma?

murray3 | @murray3 | Oct 18 8:48pm

In reply to @jam5 "What minimal side effects have you experienced?" + (show)

I am fatigued and have limited internal drive. My extremities often are cold.
Periodically, I have to deal with constipation.

murray3 | @murray3 | Oct 18 8:51pm

In reply to @jam5 "Do you have a try other medical conditions- heart fib …?" + (show)

I have no other medical conditions.

gigigatta | @gigigatta | Oct 21 6:50pm

In reply to @colleenyoung "So helpful, @gigigatta. Thank you. Are you taking zanubrutinib for relapsed mantle cell lymphoma?" + (show)

No Zanubrutinib is my first treatment after my diagnosis. My drs at Penn Medicine say that it was so effective at relapsed MCL that they are trying it as a first line treatment.

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