My friend Joe is a guest blogger today. He has just been taken off ibrutinib because of afib issues with his heart. Here is his story:
In May 2005, after an annual check-up with my PCP, I got a call from him asking me to come in again. He told me I had leukemia, chronic lymphocytic leukemia (CLL) and that he’d set up an appointment for me with a local oncologist. The oncologist confirmed the diagnosis and told me I wouldn’t likely need treatment for several years, if at all.
About seven years later, due to a large and uncomfortable spleen, a very high white cell count, many large lymph nodes and an apparent infiltration of CLL cells in my bowel, treatment was next. I went to a CLL expert and along with my local oncologist we decided on a clinical trial at a major clinical center with the drug then called PCI-32765.
I started the drug and fairly quickly my symptoms decreased. I was taking three 140mg capsules a day, all together in the morning. Some time later, I had episode of afib. I had a couple of these before starting the new drug but it was decided to reduce dosing to two capsules a day just to be safe as the drug had shown to have some possible cardiac side effects. The drug was later called ibrutinib and later still Imbruvica and achieved FDA approval for treatment of CLL. For several more years I continued on ibrutinib with few side effects and successful symptom treatment. My white cell count was in the normal range.
Early this year, I had another episode of afib. This was while on 50mg of metoprolol prescribed by my cardiologist to hopefully head off any other afib events. I called the clinical center to inform them. They suggested a Zio monitor which I used for 30 days. The monitor picked up an episode of V-tack and even though quite brief (four beats apparently while sleeping) the recommendation was to stop the ibrutinib – “a drug holiday” for three months, then to follow up with a second Zio monitor and evaluate our next options from there.
When I had a telehealth visit with my doctor, she said all looks well with one exception not related to white cells but hemoglobin. She just said to follow that up locally for now. I might not eat enough meat.
There are also other newer drugs one of which I’d been reading about called LOXO-305 which is in trials. I thought that it might even be possible to return to the lower dose of ibrutinib but that is unlikely with cardiac concerns. We discussed venetaclax, acalabrutinib and even that LOXO-305. I am looking into clinical trials. There is a venetaclax ramp up trial (short-term later to be followed locally) and one other trial currently on hold.
The doctor verified that I will be coming off ibrutinib. The risk for me with cardiac issues is apparently not worth continuing.
So, for the time being, I am once again not being treated for CLL. My doctor and I are once again developing our next plan to cope with this intrusive visitor. So, it looks like watch and wait again from here.
-- Joe
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