I have been on Imbruvica for a couple of years, having constant irregular heart beats (AFIB) all day long and it is getting worse. Doctor wants to give me Beta Blockers that lesson the occurrences of AFIB. Are there any other solutions, not quite so drastic?
Thanks Barger1951
I had pre-existing A.fib, due to chemo, and was on Imbruvica (ibrutinib) and Xarelto, but suffered internal bleeding... and a pronounced increase in A.fib.
I would recommend you see a cardio-oncologist, heart doctor who spcialize in heart problems related to cancer drugs primarily. Its a fairly new speciality, so a large research hospital was my choice...
I have recently been switch off of Xarelto, because there is no bleed antidote, and back to 81mg ASA, bisoprolol (beta blocker) and low dose ramipril (ACE inhibitor), lasix a diuretic. ... my A.fib has almost subsided... I can still see it on ECGs etc. and I have a slight awareness, when lying in my left side in bed...
After the bleed events on Imbruvica (ibrutinib) I switch to Zydelig (idelalisib) and rituxan, and had no heart issues, other than my low level A.fib.
There other treatment options, in some countries, don't know about Imbruvica (ibrutinib) dose reduction...
~chris
I've been on ibrutinib for six months and was just hospitalized with trachycardia/afib. I'd felt palpitations for days and was dizzy and short of breath when I walked into the emergency room. My heart was racing at between 170-180 bpm and they thought I was about to stroke or go into cardiac arrest - rushed me right into the critical care unit with the crash cart and paddles at the ready. It was quite alarming, to say the least. The problem became they couldn't treat me the usual way with blood thinners because of the ibrutinib for fear of internal hemorrhage, so we had to wait 3 days in the cardiac unit for the ibrutinib to clear my system - I went code blue twice - before they could push a large dose of amiodarone which took my heart from 170 to 40 in a minute. I'm now home on metoprolol and slowly ramping up the ibrutinib again and monitoring my heart rate throughout the day. I'm not allowed any heavy exertions, alcohol or caffeine - I feel like I'm walking on egg shells. I thought I was a healthy, active, athletic 60 year old - now I feel like I became a frail old man overnight. My cardiologist is coordinating closely with my clinical trial doctor, and if my afib continues, they'll try to find a balance between an anticoagulant that doesn't conflict with the ibrutinib -- but apparently stopping ibrutinib is not an option as they're concerned my CLL will boomerang back stronger than before and be more difficult to treat. My advice to anyone on ibrutinib is to watch your side effects closely and listen to your body. If you're having afib, get to a cardiologist - or better yet, a cardio-oncologist - ASAP and take it seriously. You don't want to wait till it becomes an emergency like I did.
I'm so sorry you are having such a difficult time. I'd just like to share, my husband went off Ibrutinib in March due to a heart attack. I hardly think there is sufficient data to back up the claim your CLL will come roaring back if you stop it. There are other options available.
Anyway, it's been seven months now, and my husband is stable. Blood work still excellent, nodes are staying away, he is no longer fatigued from the the drug, and he is doing great. So, to say it will come roaring back - as if it's a given for every single person - is wrong, and it's unfortunate doctors say these things. A patient's body tends to believe what a doctor says is going to happen.
Seems more likely, they want to keep you in the trial as long as they can. I know I sound cynical, and perhaps I am. When did health and medicine become dependent on pharmaceutical drugs and nothing else? And why just that one for you? Your treatment should be personalized for you, and not the drug trial. I'm not a proponent in cascading pharmacology - treating a drug side affect with another drug. It seems crazy. No wonder so many people are sick, and stay sick. They just take more and more drugs, and have a declining quality of life, and of course are told the drugs are for life. And I'm the crazy one?
Anyway, I do wish you a resolution that will keep you in good health, and not declining health.
Thank you!!!
Hi Barger.
I had pre-existing occasional Atrial Fibrilation pre-Ibrutinib. Within a few days of starting it I went into AF and the events quickly got closer together and lasted longer. I have now been on Ibrutinib for almost 9 months and blood work is doing great but the AF, although the events have become slightly less frequent, are lasting much longer.
I take an anticoagulant, a heart rate drug and have recently also been prescribed a beta blocker. I personally find the beta blocker the hardest to tolerate and intend to discuss this with my Heart doc when I see him in a couple of weeks time. You do not mention who is looking after your AF - I would recommend you see a cardio electrophysiologist (an EP has more knowlege of heart rate control) or a cardiology/haematologist would be preferable as the heart drugs you can take with Ibrutinib are limited to certain ones.
Having AF has made being treated for CLL more difficult but (fingers crossed) with the support of the Trial team, and my EP it is currently working for me.
Good look.
Netty
Thank..that was great info!!
Just as I’ve mentioned. Cascading pharmacology to try and control the direct affects of a drug. Now you are on three drugs to try and control the afib worsened by Ibrutinib. I’m baffled by this approach. But again, you mentioned you are in a drug trial. The goal of a drug trial is to get approval for whatever the trial is. So, keeping you in the trial is what’s most important. I hope you won’t have worsening health and your afib will now be a non-issue.
My husband’s cardiologist believes anyone with any heart issues should not be put on Ibrutinib. He said it’s a powerful drug and should be reserved fir those without heart issues.
Wishing you well.
I had been on the three AF drugs (or a different version of the drugs) when I started the Trial. I understand the Trial rules have now changed and if you are taking an anticoagulant you are not allowed on it.
I am grateful that I have been allowed to stay on the Trial and am prepared to put up with the side effects in order to be around to watch my grandchildren grow up.
About to start treatment on Ibrutinib.
Ibrutinib is not working any more 
Ibrutinib advice please 
