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One Year Anniversary

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Friday night, March 22, was an important date for me, a special anniversary.

On March 22, 2018, exactly 1 year earlier in Seattle, I was thrilled to know that the scientists had been able to produce my bespoke genetically modified cells, engineered to kill my CLL and that these were ready to be infused to work their magic. Success was not a given, though odds were in my favor as the manufacturing process has largely been figured out.

I finally received my genetically modified T-cells that afternoon.

That night I felt lousy, achy, flu-like, but by the next morning I was feeling fine.

I remember posting later in the week: WISH ME ILL.

I wanted to get sick because getting sick was at least loosely linked to getting rid of my then-resurgent CLL. Getting sick probably meant that my CAR-T was working.

Boy, was I going to get my wish. I was to get so sick.

And I was to get so rid of my CLL, my CLL in my nodes, my blood and my marrow.

It is not the purpose of this post to revisit all the highs and lows of my CAR-T journey. You can get all the blow-by-blows by reading my contemporaneous blog posts and those of my family written when I was too out of it to write or even to complete a coherent sentence.

The CAR-T treatment worked. My CLL was eradicated, below any detectable levels (U-MRD6) when I was restaged one month later with scans, blood work and a bone marrow biopsy.

When I had a chance to interview Dr. Cameron Turtle, one of the lead scientists and researchers on my trial at the Seattle Cancer Care Alliance (SCCA) in the fall of 2018 in Barcelona, Spain at the E.R.I.C. (European Research Initiative in CLL) first CLL conference, I was to get more good news.

He had been asked during his lecture on CAR-T as to what might be the most important factor in determining the depth and durability of the response: the degree of the expansion of the CAR-T cells or their persistence? He answered that, while the data is early, it looks as if the area under the curve, in other words mostly the height of the expansion of the genetically modified T-cells was the critical factor in determining outcome. This was more critical than how long they persist. That might only apply in the case of the JCAR14 that I received and which he was referencing. Each CAR-T product is different.

When we talked later, Dr. Turtle remembered my case and that I had had a massive expansion of my T-cells.

That may be why I got so sick and why I had such a deep and rapid response at 1 month.

One month before I had flown to Barcelona, at a little more than 7 months post CAR-T, tests had shown that I had no CLL cells (U-MRD4) in the blood and in the bone marrow.

By flow cytometry that tests down to 1 in 10,000 cells they found no persistence CAR-T cells, but by the more sensitive next-gen-sequencing, they could find barely detectable CAR-T cells in my peripheral blood.

As would be expected, I also had no normal B-cells either, as the CAR-Ts target all B-cells, normal or cancerous, that have the CD19 marker. Essentially all B-cells are CD19+.

Fast forward another four months, to almost one year post-CAR-T, and my lab was repeated, this time just in the peripheral blood. No bone marrow biopsy this time.

Drum roll please…..

Again, no CLL found down to 1 in 10,000 cells!!!

While the report summary suggested there were no normal B-cells also, when I pushed the pathologist, it appears that 0.2% of my lymphocytes are normal B-cells.

I am not sure what these means. Maybe the CAR-Ts have done their work and are gone and my healthy B-cells are returning.

In April I will ship some blood tubes up to SCCA for them to check if I still have detectable CAR-Ts. I suspect not, but I would welcome their reassuring presence.

Meanwhile I am celebrating being cancer free one full year post-CAR-T.

It’s been a wild ride, but it is all good now. I have so much to be thankful for.

Through the nonprofit CLL Society, I plan to push hard to ensure that all patients have knowledge of and access to their best possible treatment options from the new oral meds to the best monoclonal antibodies to the rapidly advancing world of cellular therapies, including CAR-T.

These new treatments have saved my life and I want to do what I can so that others have the same opportunity.

Stay strong.

We are all in this together.