I took my first pill of ibrutinib today at 7am. The pill "wallet" (individual pills in individual "blisters" on a 4-week folding card) had extra stickers warning that I should also be aware of potential dizziness and not being able to operate a car or heavy machinery.
No dizziness so far and I had a good 9.6mile bike ride on an easy, safe, low-traffic path. That's a good start.
Yesterday afternoon I got some good treatment news -- I am expected to be able to suppress my cancer to near zero via a well-tolerated daily pill.
I am very happy as this should mean no disability and as good a chance at a near normal daily life, and as few doctor visits as any of us "experienced staff" can expect.
Alongside the official confirmation that the same cell line of Mantle Cell Lymphoma had re-emerged, I was introduced to BTK inhibitors, which are neither chemo nor immuno therapy, but rather block an enzyme.
I will know if that daily pill (which starts next week) is working because the lump on my neck should "melt away" by Christmas.
There are potential side effects (atrial fibrillation and blood or infection problems) but there already exist alternative pills to pivot to when the first pill stops working (which it will in 6 to 36 months) or if I can't tolerate the side effects (20% of patients)
When the pill stops working we expect to see my neck lump return, like one of those Butterball turkey timers, and then we'll switch pills, having caught it early.
I hope to either be gently buying time for many years, or that the price of the CAR-T "cure" will come down. (For now insurers prefer $8k of pills per month to $500k for CAR-T in a single go). Or that some other cure arises, which is the miracle of our age of progress.
Compared to debilitating chemo I had imagined this seems a great option.
