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On March 22, 2018, I was an outpatient at the Seattle Cancer Care Alliance where I was transfused with my own T-cells that had been harvested a few weeks earlier, then genetically reengineered to attack my cancer, multiplied manyfold, then reinjected into my bloodstream to rest up, grow again, and then fight for my life. I became a chimera with new genetic material in millions of the CAR (chimeric antigen receptor) -T cells.
I remember saying, “Wish me ill!” I wanted to get sick. I wanted at least some cytokine release syndrome (CRS), commonly called “cytokine storm” in the COVID era, that would indicate that my body was engaged in a battle royale until no CLL cells were left standing.
Boy, did my wishes come true! As my CAR-T cells got to work, I had not one, but two storms and I won the battle royale with no detectable CLL on the scans or in the blood or marrow.
Sure, there were some rocky days, but I missed much of it. I was confused and oblivious because I was deeply medicated and pretty far gone, in a mythical green forest, as I recall. It was my wife and daughters who were alert to those tough spells. My family were the heroes who did the suffering by seeing me temporarily rendered incapacitated by a body whose controls were turned off.
But I don’t want to revisit those days. If you want the whole story, it’s all laid out in my past blog posts.
And it wasn’t all bad. I remember a meaningful Passover seder in my hospital room. I remember walks in the parks and along the water.
I remember getting the life-changing news that one month after the infusion, my cancer was nowhere to be found, less than one in a million. We celebrated with vegan Indian food and a seaplane trip over Seattle.
I got better. I recovered and returned to work as a family doctor and the Medical Director of the CLL Society.
And my CAR-T cells hung around for at least another 6 months, keeping my cancer at bay.
What is two months out of my life when it offered me a possible cure and for sure three years of cancer being a distant shadow? And Seattle was a nice place to fight the battle.
For over a year now I have been off any CLL medications. Except for low immunoglobulins that form antibodies (a well-recognized and treatable side effect of the knocking out my B cells by the CAR-Ts) my labs and scans are boringly normal.
I have enjoyed three amazing years of health and joy and travel (until COVID-19, of course).
I participated in a very early CAR-T trial in CLL. Patient 36. They learned much from my experience and that of others, and while CAR-T is still experimental in CLL it has been approved for other blood cancers. It is now rare for patients to have severe CRS.
I don’t know what the future will bring for me, but I am so grateful to be celebrating this third anniversary, knowing my cancer cannot be detected with certainty down to the level of one in a million cells. Odds are in favor of my remaining in a durable remission. But should I ever need retreatment, CAR-T would be near the top of my list.
Stay strong. We are all in this together.
Dr. Brian Koffman, MD
15 years post CLL diagnosis
3 years post CAR-T