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

Posted by teachpeace @teachpeace, Sep 29, 2024

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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zeedee1 | @zeedee1 | 1 hour ago

In reply to @kabue9 "Currently diagnosed with Waldenstrum ( blood & bone), taking Burkinsa & seems to be helping..wondering if..." + (show)

I-am on Brukinsa , Ruxience and octigam for Waldenstroms. Severe diarrhea with Brukinsa . New side effect.

murray3 | @murray3 | 9 hours ago

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.

Colleen Young, Connect Director | @colleenyoung | 21 hours ago

In reply to @kabue9 "Currently diagnosed with Waldenstrum ( blood & bone), taking Burkinsa & seems to be helping..wondering if..." + (show)

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?

siagolfer | @siagolfer | 22 hours ago

In reply to @kabue9 "Currently diagnosed with Waldenstrum ( blood & bone), taking Burkinsa & seems to be helping..wondering if..." + (show)

Taking it for CLL for 10 weeks
Working well

kabue9 | @kabue9 | 1 day ago

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!

Colleen Young, Connect Director | @colleenyoung | Apr 9 5:45pm

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

@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?

zeedee1 | @zeedee1 | Apr 4 9:52am

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

Great comments . Thanks

murray3 | @murray3 | Apr 3 12:16am

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

I am a 75 year old male on Brukinsa (Zanabrutinib) for the past 16/17 months and have not had any stomach pains. I too have dealt with periodic constipation throughout the duration. I find good nutrition and exercising as much as possible greatly help with this. For the odd 'stubborn' instances, I'll eat a couple of prunes which certainly does the job.

zeedee1 | @zeedee1 | Apr 2 9:58am

In reply to @kabue9 "Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I..." + (show)

I’ve been told not to take anything for pain but Tylenol for pain. Ibrpropen may be cause of some stomach pain. Very irritating . Check with doctor though

kabue9 | @kabue9 | Apr 1 3:53pm

Recently diagnosed with WM...78 years old & healthy my entire life..being treated with Brukinsa..wondering why I have so much stomach pain..lots of tests & all docs say its from the opioids & then constipation..stopped the opioids & not constipated anymore but still have stomach pain....what causes this...how long does it take for the bowels to heal & find pain relief? Meds I take are ibuprofen for pain but no relief...any advice is greatly appreciates.

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