Ibrutinib with afib

[purrdog]

I was diagnosed with CLL about 3 months ago. Doctor put me on leukeran for about 4 weeks then switched to ibrutinib. White cell count dropped from a high of 88,000 to 20,000 but as that was taking place my heart went in to afib and I was short of breath and couldn't fall asleep. We had to discontinue the chemo and take water pills as I had suddenly gained nearly 10 lbs. Now I feel better and have lost most of the extra fluid but don't know if I should consider going back on ib or what. Maybe a lower dosage would be ok.

[Graham2222]

I gained 6lb on Ibrutinib at first but then lost it in a few weeks. Lower dosage Ibrutinib is quite common where there is one reaction or another. Something to discuss with your consultant. Good luck.

[purrdog]

My oncologist recommended I see my cardiologist and will do that tomorrow. Am hoping maybe a lower dosage of ib is the answer. Meanwhile, my oncologist is hesitant for me to continue the ibrutinib. If fact, she told me not to take any more until I consulted with my cardiologist.

[charliegirl in reply to purrdog]

Dear Purrdog

I am sorry that you've had to discontinue ibrutinib and hope you'll be able to restart. I have been on it for nearly 5 months now and feel dramatically better, with greatly improved blood count. However, I have been having episodes of palpitations over the last two weeks and am waiting for 24 hour ECG monitoring. I haven't had any breathlessness though. I've gained several pounds in weight but have assumed that this is due to my improved general health. Did you have pre-existing heart problems?

[purrdog in reply to charliegirl]

Yes, I did have pre -existing heart problems. 15 years ago I had a silent heart attack and was on medication to correct a very bad case of arythmia. 2 years ago I had heart ablation and it seemed to do a great job of giving me back a strong even heartbeat. It was after I went on chemo that the afib kicked in.

[charliegirl in reply to purrdog]

Many thanks Purrdog. You've obviously been through quite a lot one way and another.

I'm thinking that mine are unlikely to be significant as they happened at a time when I was very busy and consequently tired

They've now stopped.

I sincerely hope that your AF will respond to treatment from your cardiologist so that you can benefit from the treatment you need for the CLL

Warmest good wishes