Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
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
-
Like -
Helpful -
Hug
1 ReactionRecently 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.
-
Like -
Helpful -
Hug
1 ReactionNo 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.
-
Like -
Helpful -
Hug
1 ReactionI have no other medical conditions.
-
Like -
Helpful -
Hug
2 ReactionsI am fatigued and have limited internal drive. My extremities often are cold.
Periodically, I have to deal with constipation.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
4 Reactions