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Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?
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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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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1 ReactionI have no other medical conditions.
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2 ReactionsI am fatigued and have limited internal drive. My extremities often are cold.
Periodically, I have to deal with constipation.
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2 ReactionsSo helpful, @gigigatta. Thank you.
Are you taking zanubrutinib for relapsed mantle cell lymphoma?
Absolutely no other procedures such as heart fib needed for me. I have been very fortunate that way!
Do you have a try other medical conditions- heart fib …?
What minimal side effects have you experienced?
I am 75 and have been on Zanubrutinib since November 2023 … so nearly a year. I take 4-80mg capsules of Zanubrutinib per day and have experienced minimal side effects. My paraprotein levels, already high, have not increased since being on Zanubrutinib; however, those levels have not decreased any while being on Zanubrutinib. My cancer is stable is perhaps the most appropriate description.
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3 ReactionsI am 72 years old and am on zanubrutinib for 3 months after a diagnosis of mantle cell lymphoma. 2 pills twice a day and I have had little to no side effects.
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2 ReactionsThankful 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.
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