What is next if Acalabrutinib AFIB wont stop? - CLL Support

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What is next if Acalabrutinib AFIB wont stop?

barger1951 profile image
11 Replies

My heart wasn't in the best of shape (2 valves replaced) to start with when I started on Ibrutinib. Ibrutinib really exacerbated my AFIB, but after a year of Ibruitinb, I was off all medication for almost 3 years......until the CLL started to get more aggressive.

My doctor put me on Acalabrutinib and the AFIB came back with a vengeance and I had a harder time going on walks and exercising. The doctor just told me to stop taking it and wants to meet with me to discuss "what's next".

'What's next' has me a little nervous and I am not sure what else she has in mind. Anyone with a similar type deal going on?

Cheers,

Barger1951

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11 Replies
studebaker profile image
studebaker

sorry about your ordeal. I was on Acalabrutinib for 8 months when atrial fibrillation experience hit me first time. I was cardioverded, but another AF hit me few weeks later and the cardio version took care of it only for a week or so and I ended with permanent AF and a heart failure.

My next treatment which I am still on is Rituximab/Venetoclax for two years and even though my heart problems are still present and under care of cardiologist, I hope for long remission after February when I finish.

I wish you well and hopefully all will be sorted out for you soon.

Dana

barger1951 profile image
barger1951 in reply to studebaker

Thanks Dana

AussieNeil profile image
AussieNeilAdministrator in reply to barger1951

Depends where you live - and whether any clinical trials are available to you. Ventoclax + obinutuzumab is another possibility (obinutuzumab is a later generation, more effective version of rituximab). Venetoclax monotherapy is also a possibility, as is chlorambucil + obinutuzumab, with or without the chlorambucil, which is a very old 'chemo' treatment and which doesn't add much to the combination, but is how obinutuzumab was FDA approved.

Neil

barger1951 profile image
barger1951 in reply to AussieNeil

thanks, great info!

BARGER1951

GIDI profile image
GIDI

My husband was also told to stop Ibrutinib after heart failure and was put on Venetoclax monoterapy for 2 years. He is now already 3 years on remission, although it looks like the CLL is crawling back. He will return to Venetoclax I suppose.

Best wishes

Annette

barger1951 profile image
barger1951 in reply to GIDI

thanks Annette

LeoPa profile image
LeoPa

Probably V+O.

Test_Tech profile image
Test_Tech

Hello barger1951,

Prior to my treatment I had to have two ablation procedures due to AFIB. So when I needed to start treatment I chose to be treated with Obinutuzumab and Venetoclax instead of Ibrutinib or Acalabrutinib. I was lucky enough to have a choice. I had no AFIB issues during my treatment due to the low probability of Obinutuzumab causing AFIB.

Good Luck

Everett

barger1951 profile image
barger1951 in reply to Test_Tech

thanks Everett

SLLJOHN profile image
SLLJOHN in reply to Test_Tech

Just to clarify the ablation procedures were successful. I have heard of stories where they work for a few days only. I am about to see a consultant to consider one…..

Test_Tech profile image
Test_Tech in reply to SLLJOHN

The first was successful until I had a tear in my Mitral valve, when the heart specialist went in to repair the Mitral valve he performed a second Ablation procedure and I have had no problems since.

Good Luck Casio1

Everett

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