Zanubritinib for CLL, started yesterday.

[LeeAnnLA]

Hello all! I'm back after a 2-year remission. Dr. Thompson at MD Anderson prescribed Zanubrutinib because Ibrutinib and Venetoclax were pretty toxic for me on the first go round, and I have migraines so Acalabrutinib was out because he said it causes headaches. No problem getting it approved by my insurance. Just started taking it yesterday. If anyone else has been taking it, I'd like to know how you are doing. Best, Lee

[neurodervish]

I don't have any advice, but am hoping to learn more about this. I thought Zanubritinib was only approved so far for mantle cell lymphoma (MCL). It's great that you're getting it.

I'm also unmutated and my CLL specialist is suggesting I + V for my next treatment. But I already have Afib & joint problems, so I have concerns. I've read that Zan is a one-a-day pill with fewer side effects, so I'll be very interested to see how you do with this.

I found the videos about BTKIs in this post from lankisterguy very helpful: healthunlocked.com/cllsuppo...

Wishing you a wonderful outcome. 😍

[Zia2]

I took it if you want to read a few of my past posts. If you do and it’s not helpful let me know.

[Mogal in reply to Zia2]

Hope your mom is doing better. Thinking of you and wishing you the best with your own treatment decisions.

[Zia2 in reply to Mogal]

Thank you so much. I’ll post when I chose another. Mom slept almost all day and too weak for PT but she’s hanging in there and sis that’s a nurse was with her all day. (Feel for the nursing staff lol).

[lizfuccillo]

I have been on zanubrutinib for four months now after having serious side effects with imbruvica. The first month was rough with a tremendous amount of bruising all over my body and petechiae mostly on my hands and face. This continued for another month or so and then the issue seemed to resolve itself as my body grew accustom to the drug. I’m very pleased with this therapy. Compared to imbruvica, this has been like a walk in the park.

[Mogal]

I have been taking Zanubrutinib for 6 months with nary a problem except for a predicted raise in my blood pressure. My dosage is 2 capsules every 12 hours, which I believe is the standard dose. I do believe that sometime around last December it did get approved for CLL. My labs have been stable and no more of the unrelenting headaches I had with Ibrutinib. Hope it works out well for you too .

[Zia2 in reply to Mogal]

I’m so tempted to try it again at a lower dose.

[Mogal in reply to Zia2]

Why not ?? Sounds like some are taking only once a day with good results. You can always add another pill if you need it. So glad your mom is hanging in there. She sounds like a strong woman who knows best how to take care of herself.

[AussieNeil Administrator in reply to Mogal]

Once a day, "Why not ??" If only it were so simple. Sadly, we have no way of predicting who can tolerate treatments with little to no side effects, while others like LeeAnn and Zia suffer intolerably. One of the factors driving the development of over 15 competitors to ibrutinib, was that an unacceptable number of patients were quitting, not because it didn't work, but because they couldn't tolerate the side effects.

The major competitive advantages ibrutinib retains over its competitors are nearly 10 years of experience, (an additional 4+ years which can't be overcome), a much larger number of patients, lower dose capsules and that it only needs to be taken once per day. The latter two options make it easier to reduce the dose. The competitors have shorter half lives, which is why they should be taken twice per day and the lack of lower dose capsules requires dropping to once a day dosing if you can't tolerate the approved dose. That potentially reduces control over CLL and may allow resistance to develop.

There's also the risk of tumour flare - the rapid swelling of nodes when you stop a BTK inhibitor, or more rarely when it no longer keeps the CLL under control. These are the reasons dose reduction should only be done with the guidance of your specialist.

I really hope we soon get more of those competitor BTK drugs approved, particularly the non-covalent bonding types, none of which are yet available other than through clinical trials. Progress with new drugs is promising for most of us, but some of us still struggle to find acceptable treatments, particularly outside of the USA.

Neil