zanubrutinib

[beanlake14]

I’m getting ready to start this drug and would love to hear from you if you’ve been treated with it. I’ve previously had FCR and then a trial with venetoclax, umbralisib, and ublituximab. So my third rodeo. Just looking for experiences, how well it works, side effects, etc. thank you

[FreoSue]

Hi I’ve been on Zanibrutinib for 6 months and doing great. No side effects to worry about except for maybe finding a new red blotch on skin somewhere on my body that goes away in a few days. My numbers went up after first month which is normal and now coming down, so it’s working as it should. So thankful for an easy option 2 tabs morning 2 tabs evening all the best

[beanlake14 in reply to FreoSue]

Thank you; great to know

[Skimom]

Hi Beanlake,I have been on Zanubrutinib for 5 months. I'm in the clinical trial with Sonrotoclax- Fixed duration. The only s/e were constipation and increased bruising. I decreased my Xarelto dosage to maintenance dose, and have had much less bruising and no bleeding. I had a headache every night for 4 months. I switched to am dosing instead of evening. Headache is gone.

Zanubrutinib seems pretty well tolerated. Good luck to you.

Diana

[Skimom in reply to Skimom]

Oops...I'm on eliquis not Xarelto for my chronic DVt/ PE problem.Diana

[beanlake14 in reply to Skimom]

Thank you so much.

[pkpayne in reply to Skimom]

I've been on Zanubrutinib since last May and the only s/e were pretty much the same as yours - constipation and bruising. No headaches thank goodness.

[charliegirl]

Hello BeanlakeI've been on zanubrutinib for exactly a year and it has worked brilliantly. I was previously on V + R but V stopped working and I was extremely poorly with severe anaemia and weight loss 10kg.

Having had ibrutinib in the past I wasn't expecting the rapid response- starting within weeks - that I had. My lymph nodes just melted away and bloods quickly improved.

The only problem that I have had has been when the zanubrutinib has been paused for eye procedures. I think I am a one-off but had a range of reactions including, calcium level rising and headaches. As I continue to need regular eye procedures (intra vitreous steroid implants) I now just halve the dose for 3 days beforehand and no problems.

I hope it works well for you

Charlie Girl

[beanlake14 in reply to charliegirl]

Thank you; this is encouraging

[hasta]

I have been on Zanibrutinib for 10 months and it is working fine but a bit slowly. My WBC was at 38k at the onset. Next two months it went up a bit, then it started going down. It took about 7 months to reach 11k. I did not experience any significant side effects, except some minor bruising. Good Luck with your treatment.

[beanlake14 in reply to hasta]

Thank you so much. Yes, I am not used to slow. I usually do something more aggressive, but I wanted to try just a pill, so we will see.

[hasta]

Yes, you need to be patient with this treatment. Stick with it, it works. Best Regards

[beanlake14]

Thank you, again. I love this forum. I seldom post, but I get such good information

[The-Man-with-a-Plan]

Bean

I've been on Z for about 5 1/2 months. Alls well so far. The only two things I've noticed: some weight gain and reduced exercise tolerance. In both cases, these are truly minor drawbacks.

My hematologist told me I might be on this med for 6 years. (I was on venetoclax for 2 years prior.) Our goal is long term remission.

I'm optimistic this WILL occur sooner rather than later.

Man with a Plan

[beanlake14 in reply to The-Man-with-a-Plan]

Thank you so much; my oncologist said when I keel over in his office at 93 (I am 69 now), we will know it quit working.

[Budd77]

I started zanubrutinib in November when my count was 150k and now they are at 41k. I had FCR in 2017 . It doesn’t work as fast as chemo , but I have no side effects.Good luck to you.

[beanlake14 in reply to Budd77]

Thank you. I too had FCR in 2017 and then a trial in 2020, so this is the third treatment. I am hoping for something less aggressive, but still good!

[Red49]

I started Zanubrutinib November 2024. My WBC was 143K bloodwork in March it was 37K. Side effects have been fairly minor, few red random spots on my skin, none of the dreaded headaches people talk about or digestive issues. I had FCR in 2019, I would take this pill any day over that.

[Elliot43]

I’ve been on ZANU since March 24 after CLL turned aggressive and was in hospital for tests and rehab. Doc thought it was Richters. But not this time

I recovered quite quickly my huge nodes decreased magically…phew!

No real side effects constipation some non itchy skin lesions on my hands in which I apply mild cortisone cream.

I had Fcr in 2013 so not a bad run

I’ve just been diagnosed with pericarditis. I see professor Cheah my Heamatologist next week so will see what he thinks if it’s due to a previous infection I had earlier this year or the CLL or treatment?

All will be well

Sheila in Oz

[beanlake14 in reply to Elliot43]

It is so good to connect with people. thank you.

[Samm22]

I’ve been on Zanubrutinib about 2 years. I feel great. Blood work normal.

[Orangecat1]

I have been taking Brukinsa since Nov of 2023. In two weeks after taking it the lymph nodes in my neck disappeared. In two months my labs were all in the normal range. They have pretty much continued to be perfect since October of 2024. I had few side effects. I did have a cellulitis on one leg which was treated successfully with antibiotics. Overall the benefit has been much greater than any small side effects. I consider myself very lucky that it works so well for me. Before taking it my platelets were 60 and my WBCs were 56,000.

Now all are in normal range and I feel well. Hope you have the same good results that I had. And I am old, 81.

[beanlake14 in reply to Orangecat1]

Thank you. So great to hear.

[mrgreentea]

Hi, On Z as my first treatment for about 10 months now (never experienced W&W, I passed 'Go' and went directly to Z). Stage 4 w/CLL, SMZL, and WM. Currently, all blood work in the normal zone (except IgA/M/G). I have not noticed any side effects. Will be exploring a CD20-targeted drug (like rituximab) at my next visit. I take it at 7am/5pm.

Best of luck - I hope your experience goes as smoothly!

[beanlake14 in reply to mrgreentea]

Thank you so so much.