Connect
Waldrenstrom macroglobulinemia: Anyone on zanubrutinib?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Hi @teachpeace Sorry to read about your dad’s reaction with the meds change-up for his WM. What was the reason for his doctor changing from the infusions to Zanubrutinib? What were the infusions? Were they no longer working?
-
Like -
Helpful -
Hug
1 ReactionGood questions that I will asking the doctor Thursday at my dad’s appt. It is my understanding that my dad lapsed in infusion txs due to his doc leaving and my dad not following up. When he finally did the new doc felt that infusions were passé and wanted to move forward with the pills. My mom and and dad agreed. And here we are.
And. Thank you for your sentiment.
-
Like -
Helpful -
Hug
3 ReactionsHi @teachpeace I have Waldenström's for 2 1/2 years getting regular infusions but my neuropathy kept getting worse, so my oncologist put me on zanubrutinib as well. three months now and my neuropathy is finally getting better - I can curl my toes again!. My side effects are fatigue and bleeding under the skin of my arm - looks like a bad bruise. I am sorry your father is getting a worse reaction. I did get an anti-nausea pills in my mix that I need sometimes. I am very happy with my progress but will be happy to get off the meds.
-
Like -
Helpful -
Hug
5 ReactionsI am so sorry to hear about your dad’s side effects to Zanubrutinib. I recommend you contact the I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) for support. I happen to be a support group co-leader for MN/W.WI. and can direct you and your parents to links that would be helpful. If you would like to communicate privately, please send a private message.
I am aware that oncologists are cautious about recommending a treatment for those of us considered frail, as we can experience side effects that younger patients may not experience.
Thank you for reaching out for direction and support.
Eunice
-
Like -
Helpful -
Hug
3 ReactionsThankful Zanu is improving your PN. Please keep in mind that Zanubrutinib is not a treatment you can just stop when your symptoms are gone. I strongly recommend contacting the IWMF for direction regarding Zanubrutinib on the HELPLINE
WM is a rare blood cancer and the diagnosis and treatments recommended by the WM specialists, change based upon the individual patient, mutations, etc.
May you continue to do well on Zanu and thank you for taking time to share your personal experience.
-
Like -
Helpful -
Hug
3 ReactionsI am 72 years old and am on zanubrutinib for 3 months after a diagnosis of mantle cell lymphoma. 2 pills twice a day and I have had little to no side effects.
-
Like -
Helpful -
Hug
2 ReactionsI am 75 and have been on Zanubrutinib since November 2023 … so nearly a year. I take 4-80mg capsules of Zanubrutinib per day and have experienced minimal side effects. My paraprotein levels, already high, have not increased since being on Zanubrutinib; however, those levels have not decreased any while being on Zanubrutinib. My cancer is stable is perhaps the most appropriate description.
-
Like -
Helpful -
Hug
3 ReactionsWhat minimal side effects have you experienced?
Do you have a try other medical conditions- heart fib …?
Absolutely no other procedures such as heart fib needed for me. I have been very fortunate that way!