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

Yes, I have WM, and I am taking Brukinsa, along with an antibiotic and antiviral prevention meds. While I have some of the same symptoms you mention, the only side-effect I think that is related to Brukinsa is bruising easily. The neuropathy is associated with WM, while others, such as energy and fatigue, are less significant and, I believe, more indicative of my age. I make a point of exercising routinely as well. I was diagnosed with WM nearly two years ago, and only since June have I been on the Brukinsa regimen. My blood chemistry is showing remarkable improvement with Brukinsa—all the best to my fellow patients who are dealing with WM, its impact on our daily lives, and the related meds. Thank you for sharing your WM journey. It is helpful.

Exact same reactions been back on infusions for a year. Ruxience and Octagam. Hit or miss on reactions but couldn’t tolerate the Brukinsa .

I have some of your symptoms like fatigue, internal drive/energy and cold feet. That's about it for now.

@jam5

My apologies as I just saw this message. My minimal side effects are my fatigue, internal drive/energy, and being out of breath which have lessened considerably from my original diagnosis. I continue having periodic constipation as well as all of my extremities remain cold which eventually leads to my entire core being overtaken by this feeling of cold.

I was diagnosed in late July and started the medication a little over 3 months ago. I'll have more blood work done Wed this week.

@carrnv42, welcome. I moved your question about zanubrutinib (Brukinsa) to this already existing discussion:
- Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/

I did this so you can connect with others living with Waldenström's macroglobulinemia (WM) discussing this medication like @teachpeace @michaelah @murray3 and many others.

You'll also find these WM related discussions using the group search. For example: https://connect.mayoclinic.org/group/blood-cancers-disorders/

@carrnv42, is this a new diagnosis for you? Has zanubrutinib (Brukinsa) been recommended?

Does anyone have Waldenström's macroglobulinemia. Are you taking the medication Brukinska. Is it working OK for you. I understand it is a rare cancer. Thank you.

I still am anemic and have fatigue with little internal drive or energy although the level of my fatigue and internal drive have gotten slightly better. I need to be on the watch for periods of constipation which I treat with eating plums.

This past winter, I was hospitalized with a very stubborn case of pneumonia which took up reidence in both of my lungs as well as in my blood. My 'hematologist/oncologist team' informed me that a very rare side effect was that Zanurutinib (Brukinsa), they felt, was likely the crux of my pneumonia. I have no conclusive evidence either way.

I am glad to hear that Brukinsa (Zanubrutinib) appears to have your WM under control currently. With respect to your peripheral neuropathy (which I also had), you might like to locate a Doctor of Acupuncture from whom you can receive regular weekly manual and electro-acupuncture treatments. These treatments worked marvellously for me. The sooner you are able to set up regular weekly acupuncture sessions for yourself, the more effective the treatment will be.

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 🙂