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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bloodguy | @bloodguy | 1 hour ago

In reply to @champ9810 "@bloodguy Like you, I had the infusions with Rituxin for the short term; I graduated to..." + (show)

Thanks!

champ9810 | @champ9810 | 2 hours ago

In reply to @colleenyoung "@zeedee1, see these related discussions: - Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/ - How are..." + (show)

@colleenyoung
I am on Brukinsa; the only side-effect currently is bruising.

champ9810 | @champ9810 | 2 hours ago

In reply to @bloodguy "I am 83/male-Initially on Brukinsa for three months followed by 6 months of B/R and now..." + (show)

@bloodguy
Like you, I had the infusions with Rituxin for the short term; I graduated to Burkinsa for the last two years, and it has improved my blood panel results extremely well. I'm 78. Obviously, we all respond differently to the meds. Hopefully, the regimen they have you on continues to produce positive outcomes for you!

chicago2025 | @chicago2025 | 5 hours ago

Rituxin might not be necessary, esp. after 6 rounds of B/R. Could lower immunity even more. IMO

bloodguy | @bloodguy | 6 hours ago

I am 83/male-Initially on Brukinsa for three months followed by 6 months of B/R and now maintenance Rituxin infusion every 8 weeks. The only problem with Brukinsa was there was no improvement/but not worse. I chose to go with infusion B/R option offered, and resulted improvement now.

Colleen Young, Connect Director | @colleenyoung | 22 hours ago

In reply to @zeedee1 "my oncologist is adding brukinsa again the my protocol. interested if any one else has had..." + (show)

@zeedee1, see these related discussions:
- Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/
- How are you managing Brukinsa side effects?https://connect.mayoclinic.org/discussion/brukinsa-effects-after-more-than-a-year/

zeedee1 | @zeedee1 | May 5 9:33am

my oncologist is adding brukinsa again the my protocol. interested if any one else has had it added

zeedee1 | @zeedee1 | Apr 24 9:43am

In reply to @zeedee1 "@sveta25 My dr cut my dose 1/2 for now and it’s much better" + (show)

same here but he added venclexta … lots of side effects but igm went down b 50%. in two weeks!

murray3 | @murray3 | Apr 23 2:25pm

I don’t have, or wasn’t given, any alcohol restrictions whatsoever. I am a social drinker who imbibed periodically but has never over done it. I’ll have a beer or glass of wine now and then but nothing major.

glueski | @glueski | Apr 23 7:41am

In reply to @murray3 "I am 75 and have been on Zanubrutinib since November 2023 … so nearly a year...." + (show)

@murray3 Hi,
Do you have ay alcohol restrictions ?

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