Heart Issues and end of Year One. - Wednesday, June 3, 2020
I have an Apple Watch and use the sleep app and health app to keep track of various items. On 5/2 I was notified of irregular heart rhythm during my sleep the previous night. I had received a notification like this one time before on 2/11/20 and just kind of ignored it because I felt fine. Since 5/2, I have received similar messages each day. In retrospect I realize my legs have been very tired after walking up one flight of stairs for the last few days.
On 5/6 I met with Dr Hu (an associate of Dr Ghosh) for my regular Week 45 visit. She looked at toe L2R and decided to stop both chemo and prescribed Doxycycline Hyclate for 7 days. She listened to my heart and ordered an EKG. She indicated that my heart was beating irregularly. Since then I can feel the irregular heart beat, and have measured it with another app on my iPhone. Dr Hu referred my to a Cardio-Oncologist, Dr Singh.
Dr Singh shipped a heart monitor to me for a 7-day period; it arrived 5/13. In the meantime on 5/10/20 my heart came back into sinus rhythm on it’s own. The heart monitor showed no problems during the 7 days.
I had a regular meeting with Dr Ghosh on 5/12 and because I was no longer in AFib he said I should start with chemo again, but at a lower dosage of ibrutinib.
5/21/20 – I had a virtual visit with Dr Singh to review the results of the heart monitor; heart was in sinus rhythm. He wants to do an echo-cardiogram.
5/24/20 (Sunday) – I notice last evening that my heart felt like it was in AFib again. Checked my watch data, and yes it was. I called LCI and it turned out that Dr Ghosh was on call. He said to stop taking the chemo until my heart returned to sinus rhythm. It did later that day, so the next day (5/25) I started both chemo again.
5/25/20 – I reviewed in more detail the data from my Apple watch; it keeps heart data for at least 1 year. What I found was that each time I was off ibrutinib and restarted it, my heart went into AFib; the first time was 2/10/20 (13 days after 2nd cataract surgery restart) and it lasted only 16 hours. Each time it lasted longer and the time to AFib was shorter. I shared this info with Dr Ghosh.
5/26/20 – Back in AFib; stopped taking both chemo.
6/3/20 – Still in AFib; had a CT Scan; had an echo-cardiogram; met with Dr Ghosh. It was a regular CT Scan and regular visit with Dr Ghosh. We decided that ibrutinib was not for me, and it has been stopped permanently. I did restart the venetoclax/placebo and am still in the trial. This meeting ended the first year of the trial (a 48 week year remember). Future meeting will be every 8 weeks.