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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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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 🙂
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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!