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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murray3 | @murray3 | Apr 3 12:16am

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

I am a 75 year old male on Brukinsa (Zanabrutinib) for the past 16/17 months and have not had any stomach pains. I too have dealt with periodic constipation throughout the duration. I find good nutrition and exercising as much as possible greatly help with this. For the odd 'stubborn' instances, I'll eat a couple of prunes which certainly does the job.

zeedee1 | @zeedee1 | Apr 2 9:58am

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

I’ve been told not to take anything for pain but Tylenol for pain. Ibrpropen may be cause of some stomach pain. Very irritating . Check with doctor though

kabue9 | @kabue9 | Apr 1 3:53pm

Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I have so much stomach pain..lots of tests & all docs say its from the opioids & then constipation..stopped the opioids & not constipated anymore but still have stomach pain....what causes this...how long does it take for the bowels to heal & find pain relief? Meds I take are ibuprofen for pain but no relief...any advice is greatly appreciates.

gigigatta | @gigigatta | Oct 21, 2024

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.

murray3 | @murray3 | Oct 18, 2024

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

I have no other medical conditions.

murray3 | @murray3 | Oct 18, 2024

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.

Colleen Young, Connect Director | @colleenyoung | Oct 18, 2024

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 12, 2024

Absolutely no other procedures such as heart fib needed for me. I have been very fortunate that way!

jam5 | @jam5 | Oct 12, 2024

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

Do you have a try other medical conditions- heart fib …?

jam5 | @jam5 | Oct 12, 2024

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

What minimal side effects have you experienced?

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