Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?

I'm 68 years young and diagnosed with Waldenstrom's Macroglobulinemia 8 months ago. My oncologists/hematologists started me on Brukinsa (Zanubrutinib) at the time of diagnosis. Same dose as murray3 (4 capsules of 80 mg) daily.
I tolerate Brukinsa very well and it's helped my IgM value significantly. While still very high it's half what is was before Brukinsa.
Before diagnosis, my symptoms of WM were fatigue, rapid heart rate when doing physical tasks, fainting (with little warning), anemia and peripheral neuropathy. While rapid heart rate and fainting have (thankfully) subsided I still have low-moderate anemia and neuropathy (fingers & toes mostly). I received IV Iron once per week for 4-weeks which helped with anemia - the neuropathy is manageable (I use handwarmers - and heating pad for my feet) which helps with pain, numbness, tingling and cold in my extremities.
My Medical Team (UCSF & Sutter) feels good about the effectiveness of Brukinsa and my body's response - indeed I'm trending in the right direction 🙂

Thank you so much.

Hello Puddy @cookegmailcom, I'm glad to see you have connected with @ejrquast. Here is the link to the International Waldenstrom’s Macroglobulinemia Foundation:
https://iwmf.com/.

would you be kind enough to provide the link to I.W.M.F. please.
I have Waldrenstroms.

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.

Hi @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?