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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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I am on Brukinsa and infusions of Ruxience, octigam and dexamethosone. The Brukinsa was giving me very base side effects so doc lowered dosage. Diagnosed with Waldenstroms 1 1/2 years ago
Doc hasn’t returned call. I stopped taking the Brukinsa and diarrhea seems beer. Nobody knowdown side off stopping this med?
So sorry to hear that..I didn't know Brukinsa could have this side effect...did you contact your doc? Also wondering if anyone on Brukinsa has had any stomach pain...I've had severe pain since November...it eases but then returns...doc's don't think its from the meds but I wonder? Any suggestions is great appreciated!
I-am on Brukinsa , Ruxience and octigam for Waldenstroms. Severe diarrhea with Brukinsa . New side effect.
I am a 75 year old male who has been taking 4 -80 mg capsules of Zanubrutinib every morning since November 1, 2023 ... some 20 months in total thus far. I have had no side effects like what you mention for your dad other than I continue having extreme fatigue and very limited internal energy. Zanubrutinib has kept my IgG paraprotein levels stable ... neither increasing or decreasing.
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1 ReactionHi @kabue9, I moved your question about WM and treatment with zanubrutinib (Brukinsa) to this relevant discussion:
- Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)? https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/
I did this so you can read previous posts and connect with others on the same treatment.
Zanubrutinib is used to certain types of B-cell cancers. For example for mantle cell lymphoma (MCL) in patients who have received at least one previous treatment for their cancer, Waldenström macroglobulinemia (WM), marginal zone lymphoma (MZL) that has come back (relapsed) or did not respond to the treatment (refractory), chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). Zanubrutinib is also used in combination with obinutuzumab to treat follicular lymphoma (FL) that has come back or did not respond to the treatment in patients who have received at least 2 previous treatments. Read more here: https://www.mayoclinic.org/drugs-supplements/zanubrutinib-oral-route/description/drg-20477009
@siagolfer, @kabue9, glad to hear that is working well for both of you. Are there any side effects you're dealing with?
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2 ReactionsTaking it for CLL for 10 weeks
Working well
Currently diagnosed with Waldenstrum ( blood & bone), taking Burkinsa & seems to be helping..wondering if anyone here has a similar experience & also if Brukinsa only treats Waldenstrums OR is it used for other types of cancer...sincere thanks!
@kabue9, I moved your question to the Blood Cancers & Disorders support group to this discussion:
- Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/
How is the pain in your stomach?
Great comments . Thanks