Cardiac arrest

[rwboothby]

Has anyone had a cardiac arrest to taking the imbruvica?

[Sucee]

Yeah, I've had several....

[Bobby4]

My husband was on Imbruvica for 2 weeks and was experiencing what he called 'flutters'. They were infrequent and lasted only a moment. We reported it to our hematologist...he examined him and felt we should continue treatment. Week 3, they began to intensify in frequency and duration. Our hematologist referred us to our cardiologist. We got in within 2 days and they put a 24 he monitor to capture what was happening. Before we could get the results, we ended up in the ER with vtach described as 'a very dangerous heart rhythm'. Imbruvica was suspended for 4 weeks while he underwent surgery for an automated implantable cardioverter defibrillator (AICD). Drs consensus was that while it was unlikely that Imbruvica caused the vtach, it could not be ruled out. While Imbruvica was suspended, his counts continued to improve. We resumed treatment for only 10 more days and his counts were normal and CT showed no nodes. Did the Imbruvica cause it? Did previous chemo treatments cause heart muscle damage that ultimately brought us to this? His hematologist believes that to be true. But..the timing would suggest that Imbruvica played a part.

[Jph02006 in reply to Bobby4]

The warning label for imbruvica has been modified this year to include ventricular arrythmias as a possible side effect (in addition to afib). My trial disclosure reports ventricular arrythmias in the 1-10% risk category. So I don't think imbruvica should be ruled out as a causal factor.

Did you stop imbruvica because of heart issues? If so, did the symptoms decline? Did you start an alternate treatment protocol?

John

[Bobby4 in reply to Jph02006]

That's interesting, John! His symptoms did decline. And..no vtach episodes since AICD placement. He was on Imbruvica for 4 weeks. Then Imbruvica was resumed after a 4 week suspension to deal with the heart issues. He was only back on it for 10 days before stopping again. Counts were normal and nodes gone. I read of so many long term users on this forum. That is not our Dr's approach. To be honest, we haven't asked why. My husband is so over all of it! Each time is becoming a more difficult battle! He's just tired of it all!! The fatigue is bad but he could really relate to Scott's recent post about losing himself. He's struggling to find the joy in life. So..when our hematologist says..let's stop..we stop.

[Soundsinamotion]

My dad is on Ibrutinib, shortly before even taking Ibrutinib he was experiencing atrial fibrillation. His cardiac doctor as well as cll doctor felt as long as my dad isn’t bothered by the afib that he should continue staying on ibrutinib.

[umpireman]

I was on imbruvica for 4 months. At the end of this period, my defibrillator delivered 4 shocks to my heart due to afib and cardiac arrhythmia. My doctor took me off Imbruvica and a month later started me on Venetoclax. To be fair, I had heart issues before starting on Imbruvica. John

[tryandtry]

No cardiac arrest, but after a year+ on Imbruvica, I developed Afib. 3 most later, it (we assume) had damaged my mitral valve. I had a TMVR, switched to Calquence, and I've done well on it so far - but I've only been on it for 4 months. Slower-acting than Imbruvica, but MUCH better (milder) re: side-effects.

Keep your eyes (and test; EKG if needed) on your heart, and watch out for any Afib/arrhythmia.

Good luck!

Gary

[crystalsky]

My husband was on Imbruvica for five months and then had a mild heart attack. He refused to go back on it, and his cardiologist also told my husband, if treatment is needed, try something else. It's been five months since his heart attack and nofurther treatment, and his blood counts are all normal, and his nodes and spleen are stable as well.

My husband's cardiologist, and a cardiologist friend from the gym both said anyone who has heart issues prior to treatment, or while on the drug, shouldn't be on it. Remember, we need a healthy heart to live. For us, the heart trumps the CLL.

[Hidden in reply to crystalsky]

I agree. I have to talk seriously to my Oncologist about this. I've never had high blood pressure in my life until now. It shot up suddenly about 2 months ago and my GP prescribed a BP pill. But my BP had always been on the low side if not just normal and now it was quite high. The only reason I can think of is the Imbruvica.

[Yuck in reply to Hidden]

While Ibrutinib causes high blood pressure in some people (and is managed by one or more medications), I don't believe the reaction of high blood pressure to Ibrutinib indicates that heart arrhythmias are also likely to develop. They are two different systems. Comments welcome.

[Hidden in reply to Yuck]

I'm not familiar with heart arrhythmias, but I am now affected by high blood pressure, caused by Imbruvica, I'm certain.

[crystalsky in reply to Hidden]

Do you have a home blood pressure monitor? If not, I would recommend you purchase one, and take keep track of your blood pressure readings at home. The problem with high blood pressure and medications, is often the medications do not adequately control the hight blood pressure. Also, prescribing a drug is just a bandaid, it is not addressing why one has high blood pressure - except for when it is known that a drug can cause it - as is the case with Ibrutinib.

Doctors will do everything in their power, from my experience, to keep patients on whatever drugs they are on, and I find it appalling. Patients are the ones taking the risks with the drugs, not the doctors. A patient will go to their appointment and tell their doctor about the effects the drug is having on their quality of life, and still they want them to suffer.

Blood pressure meds are not without their own side effects and direct effects on the body. Why are the doctors so non-chalant about the high blood pressure issue and Ibrutinib? Again, they aren't the ones taking it and having the drug messing with their heart.

I admit I'm more vigilant on this matter due to my husband having two heart attacks and five stents. The doc said if he were to need another stent in the future, he's most likely looking at bypass surgery, because he's stented out. But, I think no one should take these heart issues with Ibrutinib lightly. I always believe their is another way. So, if one drug doesn't work because of such issues, there is something else to try.

And who wants to keep adding on more and more pharma drugs to try and counteract the "direct effects" of another drug? I think that's insanity. That's the best "medicine" has to offer? I'll pass.

[june65]

My husband already had heart failure because of FCR given about 8 years ago. He has been on Ibrutinib for about 2 months ( 2 tabs a day instead of 3 ) and is experiencing dizziness when he stands up, it only lasts about 10 seconds. Would be grateful for your opinions.

Thanks. June

[cllady01 Former Volunteer in reply to june65]

June, you might get a better group of replies if you post your question yourself. Sometimes tagging on to a post gets lost in the shuffle.