Ibrutinib, Acalabrutinib, or Zanubrutinib - CLL Support

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Ibrutinib, Acalabrutinib, or Zanubrutinib

Davidcara profile image
14 Replies

If you had your choice, for initial treatment in low risk CLL, which would you choose Ibrutinib, Acalabrutinib, or Zanubrutinib ?

I ask because, some health care organizations are offering a change from ibrutinib to their patients. In addition to starting new patients on Zanubrutinib , when choosing/initiating BTK inhibitors.

14 Replies
Justasheet1 profile image
Justasheet1

David,

I have been on ibrutinib for over two years now and am one of the lucky ones. I take 3 pills a day and have had a few side effects during the first two months. Now I am MRD- in the blood for a year and a half. This was in conjunction with a few rounds of obinutuzamab.

That said, I believe that I would have started with Acalabrutinib just because of the reduced afib and hypertension risk.

Zanubrutinib is only available via clinical trial or off label now but head to head with ibrutinib performed even better so if that was approved for me that would get my nod.

Jeff

Davidcara profile image
Davidcara in reply to Justasheet1

Thanks Jeff. Yes, met with my MD and pharmacist. The choice is mine. Except for some cramps and muscle soreness, no issues with ibrutinib. Although on three different blood pressure meds. Need to think about this.

lilica955 profile image
lilica955 in reply to Davidcara

Hi DavidcaraWhat blood pressure medications do you use? I also take ibrutinib and have problems with BP! Thank you very much!

Davidcara profile image
Davidcara in reply to lilica955

Started with Lisinopril and HCTZ years before CLL, eventually dropped HCTZ after CLL diagnosis because my BP was low. Continue Lisinopril, after starting ibrutinib added Aldactone, and 6 months after that added norvasc. BP now runs 130s 120s

lilica955 profile image
lilica955 in reply to Davidcara

Thank you very much! I am on Norvasc 10mg and my BP now runs 130s-140sAll the best!

studebaker profile image
studebaker in reply to Davidcara

Since you have high blood pressure I would try Zanubrutinib if offered, but discussion in depth with your doctor is needed.Good luck.

Dana

kitchengardener2 profile image
kitchengardener2

I started treatment last August. I wasn't offered a choice just advised to take Acalabrutinib, Aciclovir, Co Trimoxazole and initially Allopurinol. This seems to be working for me 🙏 so I only recommend it. I think because we are all different than so will our treatments be different. Good luck.

WarriorPrincess4 profile image
WarriorPrincess4

I am on Zanubrutinib and have been since 2018. I am doing very well. Feel great and no side effects. I hope to be able to remain on Zanubrutinib even after the trial is completed. My BP is okay 140/75 not fantastic, but I'm happy with it.

Hope this helps.

Ellen 🌷

Davidcara profile image
Davidcara in reply to WarriorPrincess4

It does help. Thanks Ellen

CLLCalifornia-USA profile image
CLLCalifornia-USA

Hi David,I’ve been on Ibrutinib for five years and with no negative side effects as of yet. My numbers came down right away and my large lymph nodes just melted away. I feel great and can do most anything I want. Good luck. Sally

theclarksark profile image
theclarksark

After 4 years of W&W, I started Acalabrutinib in Sept. 2021. My lymph nodes and my thyroid shrunk astonishingly. The only side effect of concern was massive hair loss. I switched to Zanubrutinib in January 2022. According to my pharmacist, it costs $500 less per month than Acalabrutinib (I'm not paying anything out of pocket). I have more side effects with Zanubrutinib except the hair loss has improved I think. I have red dots appear all over my body and then disappear. I have the beginnings of rosacea, I have achey joints, soft stools, and less energy and I am only taking 1/2 dose of Zanubrutinib for 60 days now. These side effects are not intolerable but I'm hoping they disappear with time. Or, maybe they will get worse when I increase the dosage.

Davidcara profile image
Davidcara in reply to theclarksark

Thanks for the reply clarksark, hope the side effects get better for you

BluMts profile image
BluMts

David, I was on Ibrutinib for 4 years until Acalabrutinib became available in the UK Jan 2021. I developed Afib about 9 months into IB treatment and my blood pressure raised earlier on Ib. I had bleeding issues and digestive issue with IB. On Acalabrutinib, my blood pressure is hugely lower, Afib much reduced hopefully ending? Bleeding and bruising much, much less. However I've had bad stomach issues on Acalabrutinib though this has been controlled with Famotidine... ptoton pump meds are contraindicated with Acalabrutinib as affect AB absorbtion. Stomach problems are reported as rare on Acalabrutinib.

So, your system is completely different from mine in that you have no problems with Ibrutinib. However, even given that fact, if I was you, knowing the heart and other problems IB can cause, I'd be inclined to choose one of the other options. I know nothing about Zanubrutinib . Can say on a half dose of Acalabrutinib my blood results are excellent.

You are in a good position having these choices and I wish you everything good.

Davidcara profile image
Davidcara in reply to BluMts

Thanks for the info BluMts. Yeah, apparently my health care organization will no longer be offering ibrutinib to their patients who are starting treatment. They will let those on ibrutinib continue though. I am thinking of going with Zanubrutinib , I was told if I don’t like Zanubrutinib I can go back to ibrutinib. But you never know with that. I think zanubrutinib is around $25,000 less per year for the organization . It does seem to have a better side effect profile than Ibrutinib, just not the long term data.

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