Atrial Fibrillation after 100 days on Ibrutinib

[Samka]

I’ve been on Ibrutinib for 100 days with almost no side effects.

Today, when I was being prepared for cataract surgery, it was cancelled because atrial Fibrillation was detected.

I hear that probably I will be taken off Ibrutinib which disappoints me since it has been working so well.. WBC has gone from 165 to 7.

I would like to know if this has been experienced by any of you and how it’s been handled.

Thank very much for your kind posts !!

[Hidden]

Sorry to hear of your AF episode. I'm dealing with it as well. I hope you have a cll specialist to consult. Wishing you the best outcome. -bill

[Samka in reply to Hidden]

Thank you Bill !!

[David73]

Hi Samka,

I was on Ibrutinib from February 2015 to July this year. AF was diagnosed after I collapsed 6 months into Ibrutinib. I may have been suffering AF before going on to Ibrutinib since I suffered a similar collapse in 2013. Both collapses followed, probably related to, more than normal alcohol consumption through farewell parties and Christmas. The collapses occurred a few days after the alcohol intake. I now have an implanted heart monitor. The Bournemouth team put me on Venetoclax nearly 3 months ago and this has been working well with no personally know AF episodes. The cardio team have not contacted me over any episodes and I am waiting for news as to whether my AF episodes have been eliminated.

In the meantime I expressed the view that I was experiencing more tiredness than normal for me, and on Monday, 2nd October, the haematologist suggested reducing Venetoclax down to a quarter dose, from 4 tablets daily to 1. This was related to my full blood counts all coming back within a normal range, except for platelets.

I am now on 1 tablet a day subject to review depending on blood counts.

Hooray!

Good luck with your treatment.

David

[Samka in reply to David73]

Dear David,

Thank you for your very helpful post. I’m glad that you’re doing well on Venetoclax. If my doctor decides to put me on it, I hope that it works on me as well and without the fibrillation side effects.

I don’t know very much about Venetoclax but hope that it works on me as well as Ibrutinib.

Thank you very much and good luck !!

[Samka]

Thank you John, I will surely read all cllcanada posts and provide the info to my doctor before he decides on what we should do next.

Thank you !!