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CLL Support Association
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Flair Trial 7 months in...

I’ve been on Ibrutinib and Venetoclax since May and all in all have been feeling great. Last weekend I had something new, in that my resting heart rate was 160+ and no beta blocker could slow it down below 120 and then only for an hour or two. Anyway, one trip to the operating table where they performed an ‘ablation’, turns out Inhad atrial flutter and that seems to have fixed it?

I do have suspected amloidosis which may have been a factor and with polyneuropathy in my feet, there is also some thought that my iGM being over 20 could be a factor in my heart and feet?

Just thought I’d put it out there to see if anyone else has had anything similar?

Meanwhile, how best to control the ulcers?! I’m using Caphosol 3 - 4!times and days d eating tinned pineapple etc but they just keep coming. They show like blood blisters then develop into ulcers and in two days they’re gone, but already replaced by more 😢

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Kods, atrial fibrillation is a very well known side effect of ibrutinib with up to ten percent of ibrutinib users eventually gettin afib. Those with preexsiting underlying heart problems are more prone to develop heart issues with ibrutinib. Atrial flutter can be a precursor to afib, so there could be a connection.

If it were me I would want my Cll doctor to know about my heart issue and my cardiologist to know about ibrutinib being a possible trigger for my atrial fluttter so they could consult and get on the same page as for a plan to manage my heart and Cll issues.

If you google ibrutinib and atrial fibrillation you will find many articles discussing the connection. Good luck. Jeff

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Kods, are your ulcers on the skin or in your stomach? Why have you mentioned you are eating tinned pineapple? (that is about as acidic as a fruit can get and can aggravate ulcers.)

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Hi cllady01

I have mouth and tongue ulcers and tinned pineapple have always been a go to remedy for them. Something about the tin??

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Search for Mouth Sores and Venetoclax for suggestions from others who have had this side effect.

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I have used Lysine tablets with good results for mouth sores. I don't know if you can get them where you are. I let one dissolve near the sore and let the lysine go directly onto the sore. This takes away the pain and they heal faster.

Do not use this without consulting your doc about possible interactions with anything else you are taking! Ask your doc what he thinks.

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