Cycle 2 – Ooof…. Ooooooof

August 4, 2025 Bryce

The Good News Keeps Coming

While inpatient, I got hooked up to Blina on Saturday – and this time, no fevers. Hallelujah. The on-call doctor was super chill and sent me home Sunday morning. I showered, crawled into bed, and slept for about 48 hours straight, only waking up for food and bathroom breaks.

Tuesday, we saw the GOAT, Dr. Jabbour. Even behind a mask, I caught the smile on his face – I’ve watched enough America’s Next Top Model to know a smize when I see one. He asked if I knew the good news.
“Yeah,” I said. “I’m MRD-negative at 10,000 cells.”
“No, you’re clear at 10⁻⁶.”

For the laymen, that’s negative on the million-cell next-gen sequencing test – MDA doctors like to talk in exponents like we’re supposed to remember them from middle school.

After one cycle, with a super mutation and 70% disease to start, we can’t find any sign of leukemia with modern technology. My three-year survival odds jump to 75% if I finish the trial, and 90% if my CAR-T cells expand the way we hope. In 2015, relapse five-year survival odds were 10%. Now, Dr. Jabbour is telling me I’m better off than someone starting first-line treatment (initial diagnosis). Unreal. I’m so grateful to be here.

Then came Jabbour’s biweekly sermon on insurance companies. He called them crooks (I agree) and explained the dark arts of how they make money, I caught about half of it, and then he started sliding into politics until the nurses behind him started visibly twitching. He stopped before it got spicy.

I was unsure how my new NGS results would affect the trial – jump straight to CAR-T? Cut cycles to four which was the median in the 22 patient trial? Nope. Six full cycles which I’m mostly cool with. He’s the best in the world; I’ll play his game. That means I’m in Houston through mid-December, then off to Minnesota in January for CAR-T. Summer in Houston, winter in Minnesota.

Afterwards, I discussed the timing of our travel and Pammy said, “We need to winterize your car.”
I asked “What does that mean?”
“I don’t know”

Let’s talk Blina logistics and moneys. My pump gets a new bag every seven days. Fun fact: each bag costs $32,500. I’ll use 15.4 bags this trial for a cool $501K. My last bag of the cycle was scheduled to end while I was at Mayo, and I suggested they just disconnect me up there. Nope. The trial is MDA-only and pharma is footing the bill for Blina and Ino – so I have to be disconnected in Houston. Fortunately, Mayo was more accommodating than on my first couple interactions and shuffled appointments. We’re now flying up after I get disconnected on the 13th, and cycle 3 at MDA will be delayed a couple days.

Leukemia pt 1 Bryce panicked about a delayed cycle. Leukemia pt 2 Bryce is 10⁻⁶, on Lexapro, and frankly doesn’t care. After last week’s beatdown, any delay feels like a much needed reprieve.

B Cycle Beat Down

I strolled into cycle 2 feeling super optimistic: no leukemia, almost completely normal counts, and cycle 1(A) was relatively easy minus the initial Blina fevers when compared to leukemia pt 1. What I failed to remember from leukemia pt 1 is that B cycles suuuuck.

• 1B gave me my a chemo-induced hemorrhoid that lingered for a year or so
• 1B was the first time Ol Craig (liver) overheated
• 2B earned me my first ER visit

I told the nurse the truth, and boom: ER, CT scan. The ER was pleasant. The doctor was very hospitable and offered morphine, IV fluids, and pretty much anything else I wanted. It kind of felt like he earned a commission on every order. I kindly declined all his drugs, and after a clear CT scan and my 4th bag of platelets in as many days, I was out of there.

Between zero neutrophils and low platelets, I’ve had very little activity outside the hospital and apartment. I’ve resorted to Judge Judy and Legos to fill my time.

The Running Tally

• Red blood cells consumed: 1
• Red blood cells donated (on my behalf): 25, +3 from the last update thanks to Debbie, Anne, and Zbox
• Platelets consumed: 6, +5 from last update
• Platelets donated: 0