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It was 2 short years ago today, my CAR-T cells really learnt to play

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It was 2 short years ago today, my CAR-T cells really learnt to play,

They have been going in and out of glands, no guarantee that they would expand

But let me tell their story to you, the treatment that so new these years,

Brian Koffman’s splendid CAR-T cells


With huge apologies to Sergeant Peppers for my painful parody of the opening tune on the album that changed everything musical.

I too may have changed everything two years ago, at least as far as my own CLL. And hopefully offered some guidance for any chronic lymphocytic leukemia patients that follow in my footsteps.

On March 22, 2018, at the Seattle Cancer Care Alliance under the watchful eyes of Dr. Maloney, Dr. Utkarsh Acharya and the team they led, I was infused with my own very smart, very focused T cells, trained serial killers as the 36th CLL patient in the phase 1 JCAR-014 trial. My T cells had been removed, rejiggered, and grown outside me until the time was ripe for sending them back home into my blood stream.

My CAR-T cells were schooled by a virus that inserted its genetic code in order to hijack the machinery of the T lymphocytes for its curative mission. It changed them and they became less human, a chimera.

This tamed lentivirus was engineered to teach my T cells to find and destroy any cell that carried the external marker, CD-19 that is found on all B cells, cancerous or not.

It was tough for a few weeks as the genetically modified cells expanded in my body and killed all my B cells, good or bad, but a month later my cancer was nowhere to be found in my bone marrow and my CT scan showed that all my enlarged lymph nodes were essentially all back to normal.

The best news ever. You don’t get to cure without passing U-MRD (undetectable measurable disease), and I was U-MRD.

Later, my CAR-T cells would disappear sometime between 12 and 18-months post infusion, but hopefully only after all their work was done and they were no longer needed.

I have blogged extensively on my early days, less so on my recent journey.

Anniversaries are special, a time for reflection and in my case a chance to give thanks.

Fast forward to almost exactly 22 months after my fateful infusion, another bone marrow biopsy showed my CLL was less than one in a million cells. Scans gave the happy news that my lymph nodes had all shrunk even more or had remained stable compared to 2018.

Since then, I have stopped my ibrutinib, the experimental drug that surely saved my life after almost 8 years and my labs remain stable, at least for the first two weeks.

Timing is everything. My failed hematopoietic stem cell transplant bought me just enough time to get to a phase 1 trial of PCI-32765 that later became ibrutinib, that bought me just enough time to get to an experimental Juno CAR-T trial that hopefully will buy me just enough time to grow very old with my wife and caregiver, Patty and maybe another generation of my expanding family.

When I was diagnosed 14 ½ years ago, I foresaw none of this. All that was offered was chemo, transplant and likely an early death.

I am so lucky. Timing is everything!

Let me shift my focus to the present virus that is hijacking our cells for a more malevolent purpose. Coronavirus, specifically SARS CoV-2 is shaping our consciousness and our world order, or should I say disorder. I have done isolation a few times in the past due to my fragile immunity, but I was a one off. Others in my social circle were not isolated. This time is much more Gulag. I was never worried about our supply of toilet paper.

That said, I have great confidence that we find a quick remedy for coronavirus (we may already have done so) and just maybe a vaccine for next year, or more likely the year after. We are getting better at blocking viruses – think HIV, hepatitis C, herpes zoster, and simplex.  Gene sequencing will make vaccine development a much quicker process, but the clinical trials will still take the same amount of time.

How quick all this medical progress happens, who knows, but there are great minds and big money chasing this pathogen. We are smarter than this germ and we will ultimately triumph.

But too many will die first.

What I worry about, just as much as the medical impact, is the coronavirus induced social and economic disruption in an already disturbing, dysfunctional community and body politic. This could get ugly and rip open wounds that could take decades to heal.

I hope I am wrong.

And I might have a remedy.

As Father Anthony de Mello and others have taught: Happiness comes from within. The trick to being happy is to get rid of what is stopping you from being happy. It has to do with getting rid of stuff, not acquiring more. So, if basic food, shelter and health needs are met, and that could be a be a big if in the next few months, this could be the best time ever to shrink our worlds to what really counts.

Cancer patients are good at that. We are experts at setting priorities. This is our opportunity to lead the way.

What a perfect ZEN moment to practice detachment.

My CLL friend from Paris, Pierre, reminds me that hope is the last thing to die. I remain hopeful.

And I will not let this pandemic take away any of the joy of reaching the landmark of having no detectable cancer.

Stay calm. Stay strong.  We are all in this together.


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CLL Society - Living With CLL

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.