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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 started Brukinsa in July of 2025. My IGM was around 3000 it is now down to around 900. I see the doctor next week for another round of blood work. Hope it is still going down. I have pain in my lower back and neck, but I also have a bad case of arthritis. I also get tired very quickly when I try to do any projects, have stop for a few minutes and start again. That's the pattern. I have also noticed my daily memory is slipping. I'm 83 and my blood count has been low for the past 5 or 6 years. The doctors kept giving my B12. Finally a doctor, (after I pushed them to find out way my blood count was continually low) check my IGM's last year and a bone marrow biopsy and saw what was wrong. I will try to remember to give a follow up after my test next week. Good luck.
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2 ReactionsI was diagnosed with WM in the fall of ‘24. The doctor first wanted to try infusions, but due to my mitral valve prolapse that has in the past cause tachycardia and other rhythm issues, I was not able to tolerate the infusion so started on Brukinsa. I started having severe pain under my right rib cage but eventually figured out it was due to the increased constipation from the medication. It comes and goes still, but usually a couple stool softeners for several days gets me going and the pain disappears. Otherwise, I’ve noticed I am more fatigued, have some blurry vision, and some balance problems. It has been effective on my IGM number which started at 1100 and now is down and staying around 500. It’s difficult for me to discern what is coming from the cancer and what is coming from the medication. I’m curious to know if anyone has seen a link between high stress and WM.
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2 Reactions@carrnv42 Hi, I was diagnosed May'24 and I've been on Z ever since. I haven't noticed any reactions to it. After being on it a bit my blood work (sans IG levels) is all normal. Z doesn't fix that.
Learning about CLL/WM was like taking an accelerated calculus class. There is a LOT to learn. This site, among others, is a great place to start.
Best of luck!
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2 Reactions@champ9810 thank you.
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.
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1 ReactionExact same reactions been back on infusions for a year. Ruxience and Octagam. Hit or miss on reactions but couldn’t tolerate the Brukinsa .
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2 ReactionsI have some of your symptoms like fatigue, internal drive/energy and cold feet. That's about it for now.
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1 Reaction@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.
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1 ReactionI 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.
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1 Reaction@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?
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