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

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!

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.

This is fabulous news and best wishes !

Are you taking allopurinol or other prophylactic medicines like acyclovir now

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!

Remarkable 👍Stay well 🙏

Started Burkinsa about six months ago. I've had an outbreak of purpura on my feet and legs. Itchy and incredbily unsightly (darn right ugly!). Informed my oncologist and he said it's a side effect of the Brukinsa and that it's aesthetically displeasing (no kidding!) but not dangerous. Went to a dermatologist and had it biopsied. The results indicate it's a form of vasculitis, but posed no danger. I've been applying a steroidal ointment and taking antihistamines.

Has anybody on Brukinsa experienced this side effect? If so, where did you get the purpurae? How widespread was it? How did you treat it? Did you have to change to another BKT inhibitor?

Thanks!

Hi @anniehall12. While you’re waiting for other members who take Brukinsa to pop into the conversation I just wanted to welcome you to Connect.
The purpura on your feet and legs can sure mess up a summer fashion look…sorry to hear you’re dealing with that! At least it’s not a danger but still. Do the ointment and antihistamines help with the side effect?

I guess, more importantly, is the Brukinsa helping to keep your CLL managed? How long ago were you diagnosed? Have you talked about other potential options with your doctor?

See my comment above with my 8-year experience on Zanubrutinib. The last couple of years my bruising and blood spots have increased and lasted longer. It's a known side effect of the drug. In my case, it's a small price to pay. If it is serious and bothersome, perhaps your hematologist can adjust the dose or try a different BTK inhibitor.

I’m taking Brukinsa for MZL and find that I’m covered in bruises and petechiae all over my neck, arms and legs. Sometimes there’s petechiae on my face, earlobes and eyelids! I haven’t tried it yet, but my dermatologist said I could try arnica cream to help them go away quicker.
Best wishes,
Andi