Ibrutinib and A-fib

[prayerstep]

I'm new here and have had CLL for 15 years. Just now we are considering treatment. I like the drug ibrutinib but I also have A-fib. Does anyone know of similar drugs that are well tolerated by patients with Afib?

[Hidden]

acalabrutinib is supposed to have fewer side affects and less A-FIB issues

[cllady01 Former Volunteer]

Prayerstep, welcome. It is difficult to make a judgment about another's suitability for a specific treatment. Your Dr. (hopefully in consultation with other CLL Drs. and with you can only decide on your specific situation.

the following is a CLL Drs. "How I treat CLL Patients with Ibrutinib" and there is information on her views re: heart issues of which Afib is one. I hope reading this will help you to see the possibilities and have some info to take to the discussion with your Dr.

bloodjournal.org/content/bl...

I hope it helps you to have some information to share with you Dr. for an assessment of your specific situation.

[AussieNeil Partner Administrator]

You can determine your degree of risk with Ibrutinib by using this newly developed risk determination algorithm: healthunlocked.com/cllsuppo...

If you share where you live and lock your post so that it is only visible to our community, you're likely to get replies about clinical trials and approved treatments available to you. Being prepared to enrol in a clinical trial would give you the most alternative options. You can lock your post by editing it through selecting 'More v' under your post and changing the setting under "Who can see my post"?

Neil

[prayerstep in reply to AussieNeil]

Thank you for taking the time to reply and the link to the risk determination. So helpful.

[Thundercat2]

Hi prayerstep,

I too am facing treatment soon and have had an A-fib episode several years ago. I am likely going to do a trial of either 2 or 3 of the new generation drugs, of which one will be Ibrutinib. Both of my CLL doctors think that even with the A-fib I can do well or at least be monitored so that if they need to manage the A-fib they can. I have discussed this with my cardiologist too and he also said it is manageable. Others on this site have had A-fib and have been able to continue on Ibrutinib.

I hope this helps. Wishing you all the best!

Thundercat

[tryandtry]

Hi Prayerstep, & welcome:

As I've previously reported, IB was great for me against CLL, but it caused Afib, and led to mitral valve problems, that needed repair. I've switched to Acalabrutinib (Calquence), and so far, so good - slower-acting than IB, but much fewer side-effects.

However, unless you're in a trial, or your CLL specialist can help, you might have trouble getting the drug - especially frontline. It's FDA-approved for Mantle cell leukemia (MCL), but not yet for CLL (soon, maybe - MCL approval was 10/17). I got it Rx'd "off-label", but it's my third CLL drug, not my first.

Good luck, and remember, if IB causes Afib 10-15% of the time, that means you have an 85-90% chance it won't get you. And, it usually works against CLL.

Gary

[prayerstep in reply to tryandtry]

Unfortunately, I already have A-fib.

[tryandtry]

Sorry about that. But most people and MD's here on HU report that they can handle Afib with blood-thinning drugs. I had a previous MAJOR stroke, so they repaired my mitral valve and put me on a heart-pacing drug, instead.

Good luck.

Gary