A Patient's Experience with CAR T-Cell Therapy (Part 3)

The four weeks after getting my CAR T-cells (chimeric antigen receptor T-cells) back were a blur. I was back in hospital for check-ups most days, but apart from that, there was nothing much to do apart from watch TV in the apartment we were staying at near the hospital. Every now and then, I’d see my wife staring at me, trying to see if anything had changed. Perhaps disappointingly for her, nothing much did, at least not on the outside.

On the inside, however, we hoped a lot was changing. We hoped that the CAR T-cells were flying around my body, noticing the cancer cells and responding. The cancer cells I had were from a blood cancer called lymphoma, and they expressed CD19 – that is to say, on the outside of the cells there is a little distinct cluster of proteins and molecules that are the markers for this type of cancer. All going well, the CAR T-cells would latch on to these and kills the cancer cells.

My CAR T-cell side effects: A surprisingly mild flu

From the outside, the way I’d know this was happening would be because I’d start to feel like I had the flu. And so it was with some delight, on about Day 8 after infusion, when I woke up with achy joints, slight headache, slight temperature, and sniffles. Essentially, my body was fighting an infection – an infection that had been there for nearly two years, but which only now the body could notice with the help of CAR T-cells.

It was a mild response. So mild, in fact, that I got a bit worried. shouldn’t I be sicker? I’d heard stories of the possible side effects, and for some people they can be extreme. My mild flu was hardly anything. I asked my doctor about it, but he was relaxed. "Some people," he explained, "are lucky enough to get the full impact of CAR T-cell therapy with very few side effects."

I hoped that was me. But I wouldn’t know for sure until after Day 28, when we’d do a repeat PET scan, and some blood tests.

The mild flu lasted about a week, then faded, and so when I presented myself for my PET scan I was actually feeling pretty good. Very good in fact. Something felt different. I felt more energetic than I had in a long time and very optimistic.

The outcome of my CAR T therapy

Later that day I had my appointment with my doctor, to tell me the results.

I’ll never forget it. He walked into the room and instead of the usual pleasantries and discussions about the weather, or sports, or what I’d been doing the past few days, he asked if he could just talk.

"It’s the best possible outcome, there is no sign of cancer left. You are in complete remission."

It was a joyous occasion, and after we high-fived the doctor, and called home to let everyone know, we went out for a celebratory drink at a local bar – joined by the doctor, nurses and a few new friends we’d met along the way.

I’ve been very lucky – not only did I get access to the miracle treatment that is CAR T-cell therapy, but I also got the perfect result AND had virtually no side effects. I know not everyone gets those three things, and I am grateful.

CAR T-cell therapy is a major breakthrough in the understanding and treatment of cancer, and as we learn more about how to use this technology, the efficacy will only improve.

We are fortunate to live in such exciting times.

Read Part 1 and Part 2 of David's CAR T-cell experience, from preparing for treatment to receiving his CAR T cells.

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