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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

coleypd | @coleypd | Sep 1 3:41pm

My husband had to start taking Bruinska, one of the drugs caused Afib & the other drug caused him to swell up like a toad so he could take either one. He has done okay with the Bruinska

zeedee1 | @zeedee1 | Aug 21 8:59am

i went back to infusions after trying brukinsa and another drug … the pillls were unbearable.

coleypd | @coleypd | Aug 20 8:33pm

He is doing okay with the Bruinska. He does have issues but not always sure if it is the chemo pill, etc. His has metasised and he has inoculated pockets on his lung which are stating to push into his lung so he does hurt. He does have Pallative Care which is a GODSEND to manage his pain.
I am okay, I am trying to be a good care giver and not compliant because I know God’s got this

Colleen Young, Connect Director | @colleenyoung | Aug 20 7:42pm

In reply to @coleypd "My husband has been on 2 cancer pills for WM and he could not tolerate them..." + (show)

@coleypd, answering the question of life expectancy is a difficult one to answer. The only person who can make an estimated, informed guess would be his hematologist/oncologist who knows his health status, progression of disease, age, etc.

How is he tolerating zanubrutinib (Brukinsa)? How are YOU doing?

coleypd | @coleypd | Aug 7 6:34pm

He is also on Fetanyl patches for the pain in his lung.

coleypd | @coleypd | Aug 7 6:33pm

My husband has been on 2 cancer pills for WM and he could not tolerate them & he has been taking Bruinsksa for 2 years. I keep asking what is his life expectancy? He is 81 and suffers from chills, dizziness, fatigue. It metastied to inoculate pockets in his lung.

murray3 | @murray3 | May 19 5:23pm

I am a 76 year old male who has bee n on Brukinsa (Zanubrutinib) since November 2003 until it was decided to temporarily stop completely on January 30, 2026. My anemia, extreme fatigue, shortness of breath, etc. continue and in many cases, have continued and intensified after me having temporarily having stopped.

kabue9 | @kabue9 | May 19 4:37pm

In reply to @bloodguy "I am 83/male-Initially on Brukinsa for three months followed by 6 months of B/R and now..." + (show)

@bloodguy I've been on Brukinsa for about 17 months...had 10 radiation treatments many months ago..thats the only treatment I've had & we see improvements...doctor does an EKG & blood tests every 3 months & so far I think I'm healing! Great luck to you...keep the faith!

bloodguy | @bloodguy | May 19 11:42am

In reply to @champ9810 "@bloodguy Like you, I had the infusions with Rituxin for the short term; I graduated to..." + (show)

Thanks!

champ9810 | @champ9810 | May 19 10:56am

In reply to @colleenyoung "@zeedee1, see these related discussions: - Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?https://connect.mayoclinic.org/discussion/waldrenstrom-macroglobulinemia/ - How are..." + (show)

@colleenyoung
I am on Brukinsa; the only side-effect currently is bruising.

Please sign in or register to post a reply.