Treatment for CLL: Any experiences with Brukinsa (zanobrutinib)?

Posted by siagolfer @siagolfer, May 21 8:00am

Started therapy for CLL after 2.5 years of wait and watch with my excellent doctor at Mayo and local haematologist.This was predicted based on prognostic factors of age(77 now) IGHV unmutated and size of lymph nodes by CT scan . 5 out of 10.No TP 53 disruption
Until that time many background tests done including FISH, CT CBC weight loss etc
Before starting therapy had CT scan, bone marrow sampling,skin check, EKG etc
Doctor gave me a choice of Brukinsa( Zanobrutinib) or combination of Venetoclax plus obinutuzumab both being equally effective in my case.l chose the capsule therapy vs Infusions for convenience.
The doctor stated me at the half dose of Zanobrutinib ( Brukinsa ) 80 mg twice a day two weeks ago.
So far no side effects. Taking allopurinol and acyclovir also.
In two weeks my WBC has gone up from about 90 to 150 and platelets down from 100 to 80.This is as per expectation since the cells from my nodes are now in my blood stream and BTKi impacts bone marrow (platelets)
Sizes of my nodes has shrunk significantly
Uric acid on target.
I have to watch out for bruising or bleeding.
So far so good.No changes in diet or lifestyle.
Name of game is stay positive!

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jm53 | @jm53 | May 21 5:56pm

Hello @siagolfer! I am happy to hear you are doing well with the medication. I was diagnosed with CLL last month and I'm still trying to wrap my head around the side effects of the medication you are taking. Your post is very helpful and gives me a little peace of mind. I hope you continue to do well and stay positive!

mrgreentea | @mrgreentea | May 23 9:16pm

Hello @jm53, first, sorry to hear that you've joined the CLL club. I was dx'd at stage 4 right out of the gate (last May) despite having no significant symptoms. I was a bit stressed back then & had the crash course on CLL. The moderators here know a lot & have been quite helpful.

I've been on Z for about 12 month with no impactful side effects whatsoever. I take it twice a day (8am/5:30pm) with full glasses of water. For me it has become a habit that I don't stress over. I know that some people do have side effects, but they are typically less with Z than earlier drug options.

I do wish that they would send at least a 90 day supply so I don't need to talk to the prescription company every month, but that's a minor nit. It's a $15k/month drug that I pay $75/mo for on my health plan. There are also great new drugs if Z stops working for us.

There are a LOT of past posts here that you can search through to get more answers. Feel free to msg me for more info.

siagolfer | @siagolfer | May 23 9:56pm

This is fabulous news and best wishes !

siagolfer | @siagolfer | May 23 9:58pm

Are you taking allopurinol or other prophylactic medicines like acyclovir now

minnesotajim | @minnesotajim | May 24 7:47am

I was diagnosed 19 years ago and started on ZANUBRUTINIB 8 years ago (clinical trial at Mayo). I’m still on it—go to Mayo every 3 months. Minimal side effects (bleeding/bruising tendency, occasional slight cough). Clinical trial is ongoing to see how long it continues to work and whether side effects develop over time. There’s a reason this disease is called “chronic”—just live with it and take the drug!

siagolfer | @siagolfer | May 24 12:22pm

Remarkable 👍Stay well 🙏

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