Afib and ibrutinib: Waiting to see oncologist on... - CLL Support

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Afib and ibrutinib

Ragsgolf profile image
5 Replies

Waiting to see oncologist on Monday. Have talked to pharmacist at Diplomat Specialty drugs as well as been seen by my cardiologist. My cardiologist increased my Toprol. The pharmacist is talking lower dosage or ceasing ib. I'm wondering when others have experienced afib on ib what the solution has been and whether they ended up able to continue with ib. Also wondering if stress adds to the problem. Perhaps if I take some proactive steps to release stress the Afib would just go away! But maybe I'm just one of those unlucky few small percentages on the severe side effects chart.

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Ragsgolf profile image
Ragsgolf
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Mikey47 profile image
Mikey47

Hi Ragsgolf,

I am on the Ibrutinib arm of the RESONATE 2 study since last September. Part of the screening process included an ECG to check heart function.

The patient information document I was given at the start of the study lists the side effects in 3 categories; Likely, (more than 20% of patients), Common, (about 3 -20%) and Rare but serious (less than 3%). Atrial fibrillation is listed under the latter, so yes, you are one of the unlucky few, it would seem, sorry to say.

Good luck with your Onc on Monday.

zevkalman profile image
zevkalman in reply toMikey47

That's an interesting side effect. What would be the scientific reason for that???? What does blocking the BTK gene have to do with the cardiovascular system? I know it might not be important clinically "why it happens" but I'm interested in if anyone has read anything about it in the journals. Also, the new more specific BTK inhibitors (or as we can call them "Ibrutinib 2.0") coming up in the lab and in trials that are even more selective to that gene--will they have the same side effects? Dr. Furman indicated that the new ones are more selective and will not cause some side effects (he gave diarrhea as an example, but I wonder if there will be other advantages).

Mikey47 profile image
Mikey47 in reply tozevkalman

Not sure Zev. I just google'd Ibrutinib and Atrial fibrillation and about to browse the results.

Afib is not alone, there are several other serious side effects including subdural haematoma (bleeding around the brain), acute kidney injury, respiratory failure and stroke.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toMikey47

Here is the ibrutinib drug label... all known adverse events are listed. These are kept current...

dailymed.nlm.nih.gov/dailym...

Ragsgolf profile image
Ragsgolf

Update for my Afib. Very mild this evening with no need to take nitro so maybe the added Toprol is helping. After I had one BR treatment and WBC and other counts didn't recover I developed bigeminy ( double heart beats). I also found out from previous ultrasounds that my upper chambers are slghtlty enlarged, indicating possible mild Afib previously. So maybe I just have a predisposition. Basically a bad hear. Interestly a recent stress test showed great performance so go figure. Perhaps stress is exacerbating my heart since I am dealing with my husbands early onset Alzheimer's which has progressed pretty rapidly this year and a troubled grandson who is staying for the summer along with dealing with decision making regarding the need to downsize our too large two-story house and large yard. Hummmmm. Yes stress my be the culprit. Oh yes, ets not forget the worry about having a sneaky disease and chemo. But I allowed myself a big breakdown today and feel better for it. Such fun! Nothing boring in my life.

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