Better Than Expected

When the 2004 Detroit Pistons made their surprising run to the NBA Finals, nobody gave them much of a chance against the star-studded Los Angeles Lakers. The Pistons were a gritty defensive team with no traditional superstar, and the Lakers were the very definition of a superteam with in-their-primes Shaq and Kobe, along with surefire Hall of Famers Gary Payton and Karl Malone. Most pundits were predicting the Lakers, who had won three of the past four championships, to sweep the series. And with game one being played in Los Angeles, it was widely assumed the Lakers would open the series with an easy win.

Instead, Detroit stunned the Lakers with an 87-75 victory, playing suffocating team defense and showing that they would not be intimidated. The Pistons would go on to win the series in a mere five games, ending the Shaq/Kobe era in LA, and forcing that jerk Karl Malone to retire without a ring.

Similarly, my leukemia diagnosis was intimidating when I first learned of it. In October of 2024, my white blood cell count (WBC) was at 77,000 per microliter. Your WBC is almost certainly in the normal range between 4,000 and 11,000 - so I was about 7 times the normal upper limit. 

Before I started treatment this past Tuesday, my WBC had risen to a staggering 254,000 (25x the normal upper limit), my lymph nodes were swollen all over my body due to accumulation of leukemia cells, and my healthy blood cells were having a hard time doing their jobs due to rush hour traffic everywhere in my blood stream. It was unclear how I’d respond to the obinutuzumab infusions and the pirtobrutinib pills - would I have a reaction that stops the infusion? Would the treatment work? Or would I have a resistant and biologically challenging disease?

Well, as you may have read yesterday, my body handled the infusions well, my lymph nodes are shrinking dramatically, and after just two days of treatment my WBC sits at 109,000. Yes, you read that correctly, more than half of my cancer is dead and gone after just 48 hours. The malignant superteam I initially feared is turning out to be just a bunch of washed up Karl Malones.

Go Pistons!!

First Obinutuzumab Infusion: Turn Down For What???

So they hooked up the little clear bag to the top of my IV pole (is that what it’s called?) and connected it to my vein. We started the infusion right at noon, preceded by two pirtobrutinib pills, some benadryl, tylenol (look out, RFK!!), and a cartoonishly large Starbucks coffee that would only look normal in Andre the Giant’s hand. 

And I waited for the reaction, and I scanned my body for flu-like symptoms, and I asked the nurse if I’d be feeling them by now, and….nothing happened. No reaction at all. My body handled it no problem, and the most eventful part of that four hour infusion was how much I urinated. I got it into my head that every time I pee, that’s cancer leaving my body (that's really how it works, by the way), and I was determined to go every 30 minutes (success!). My nurse wanted to monitor my urine (color, amount, etc.), so she gave me these plastic milk jug-looking things and told me to pee in those and leave them in the bathroom - I just kept filling those suckers up.

Lil John

I’m feeling pretty great about how yesterday went. It’s unclear whether or not the fact that I had no reaction when most CLL patients do is any indication that I’ll tolerate or respond to this treatment better than average, but I’m gonna go ahead and tell myself that it is. Of the 80 or so patients who have done this trial before me, more than 80% of them were uMRD6 by the end of the trial. uMRD meaning “under measurable residual disease” and the 6 meaning out of 1 million blood cells. In other words, they test 1 million blood cells and cannot detect a single CLL cell in there. That’s the most sensitive blood test that exists, and I like to think I’ll be a part of the uMRD6 gang by the end of 2026. Also, the leukemia doctors here believe that some patients will be “functionally cured” by this trial, meaning that the disease will exist at some small molecular level, but the patient will never relapse nor require treatment again. Why not me? Sure as hell handled that first obinutuzumab infusion well.

Yesterday’s silky smooth infusion also means a high likelihood that I’ll be discharged some time tomorrow afternoon (Thursday), and the Houston Rockets have a home game against the defending champion Oklahoma City Thunder. Might have to check that out!

Today will be some more pirtobrutinib (I’ll be taking this daily for the rest of the trial), followed by the remaining 900ml infusion of obinutuzumab. Becky will likely be here soon with a Starbucks for every man, woman and child in Texas, and my urine jugs are about to get a workout. The cancer cells in my body are about to have a rough Wednesday. 

Let's Get it Started

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.