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CAR-T Three Years Later: Dr. Brian Koffman Celebrating a Durable Remission

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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

4 Responses

  1. Congrats on the 3 years and 15 years, Dr. Kaufman. Can’t thank you enough for the CLL Society. It has been a great source of information for me as I work on figuring out how to beat CLL into remission. So far naïve, with eastern medicine (TCM), change in diet and ramp up in exercise. Take good care and thank you for the continuous information flow. Oh yea, thank you for the interviews, it lead me to Dr. Jennifer Brown, Dana Farber. Long haul from Temecula, but have continued to search for the right combination of Dr and patient. All my best to you and your family. Brad Bassi

  2. I am very, very happy for you, Dr. Koffman, and I appreciate so much your advocacy, expertise, and the sharing of your story. I’ve just completed my year of the VenG therapy and am awaiting MRD testing in May. We are fortunate to be living in this age with amazing work being done by scientists and medical professionals. Congrats on these 3 years of good health!

  3. I am just starting my CLL journey. Is it possible to go directly to Car – T rather than trying other temporary approaches?

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