It's Tuesday morning, and I spent the night in the hospital with some needles in my arm and an IV pole next to me. Got a decent night's sleep considering frequent interruptions from pleasant nurses drawing blood and taking my vitals. First obinutuzumab infusion is today, and I start taking pirtobrutinib pills today too.
Before I get in to that, let me tell you about the upbeat doctor appointment we had yesterday. We got to see Dr. Chien, who was all sorts of sore from the previous day's Houston Marathon. She was so delighted that Becky and I showed up to watch her run, that she had told the rest of the MD Anderson leukemia department about it. So, when we arrived to see her, all the nurses and PAs had already heard about it, "Oh, you two are the ones who watched Dr. Chien run? Hold on, let me get so-and-so to come in here and meet you!" We got to meet Dr. Nitin Jain, who oversees the clinical trial I am starting today, and is sort of a celebrity to me - I've watched several interviews with him, listened to podcasts he has been on, and I've devoured his research papers. He just wanted to come meet us because he heard the marathon story.
We chatted with Dr. Chien for about 30 minutes, and 25 of those minutes were about running, recovery, and next year's Houston Marathon. Dr. Chien said she already signed up, so I did too! I also decided on running the Cincinnati Marathon this May, so I've got a robust running schedule ahead of me (Detroit in October as well). How am I going to pull all this off while receiving cancer treatment, you ask? Apparently the only side effects I'll experience throughout this whole thing will be today, and today only.
Today begins an infusion of obinutuzumab, which is a monoclonal antibody. In short, this antibody will "flag" the cancer cells for destruction by my immune system. I probably will feel some flu-like symptoms as my body adjusts to this drug. They're going to give me 10% of the infusion today, monitor me for TLS (tumor lysis syndrome), then administer the remaining 90% tomorrow. The biggest danger is that the drug works too well. When the cancer cells are killed, they all need to get processed through my kidneys and out of my body by way of urine. From what Dr. Chien tells me, this first infusion is going to kill so many cancer cells that my kidneys might be overwhelmed. Better start hydrating.
I'll also be starting pirtobrutinib, which is a BTK (bruton tyrosine kinase) inhibitor and is the trial drug provided by Lilly. CLL cells reproduce by way of BTK signaling, and this drug blocks that signal, resulting in long-term disease control. Pirtobrutinib is a 3rd generation BTK inhibitor, preceded by acalabrutinib and zanubrutinib (2nd gen), and ibrutinib (original gangster). Before ibrutinib came around in the early 2010s, there was nothing. CLL patients would just sort of slowly get sicker and sicker, then die. Ibrutinib gets the "brut" from bruton, the "inib" from inhibitor, and the "i" as a nod to Steve Jobs - the iPhone came out shortly before the drug. The story of Ibrutinib is a wild one that could be its own separate blog post, but in short, it sort of happened by accident and revolutionized CLL treatment. It changed the CLL outlook from "certain slow death" to "controllable for years", and today I'll be getting version 3.0 - more effective and with fewer side effects. The doctors know it's damn good, and this trial is trying to determine just how good it really is.
Ok, we're about to get started so I gotta run. Becky brought a bunch of Starbucks to the hospital room just now, and there are a number of thrilled nurses walking around here. She has a way of bringing joy wherever she goes.
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