A Patient's Experience with CAR T-Cell Therapy (Part 2)
I remember the first time I saw Bob Dylan play live. I’d been anticipating it for months – I love his music, and I’d gotten myself all wound up and excited about seeing him and hearing him live. I remember the excitement of the build-up, the delicious feeling of expectation… and then the disappointment. It was completely underwhelming. The height of my expectation was far more than he could deliver on, and I went home feeling somewhat let down by the whole experience.
Getting my CAR T-cells (chimeric antigen receptor T-cells) back was a little like that. Underwhelming, in that the process was nowhere near as dramatic as I’d expected – but unlike Dylan’s concert, I wasn’t left wanting my money back. There was no disappointment as I knew that the cells were now inside me, hopefully starting their work.
CAR T cell day 0
I’d arrived at the hospital early on Day 0, ready for my cells. I don’t know what I was expecting – perhaps an honour guard of doctors and nurses, lined up to welcome me back to my second life? Perhaps a dramatic light show, with laser beams and confetti falling from the sky to mark the re-insertion of the cells? A free balloon?
Well, there was none of that. Instead, it was a nice nurse, and a technician sent up from the lab with a small cooler box full of dry ice. Once they’d checked the labels, and taken out the small vial of my CAR T-cells, the technician said ‘good luck’ and left us to it.
No fireworks here
Considering the tiny syringe was something I’d been looking forward to for a year – travelling halfway across the world and spending hundreds of thousands of dollars – you’d think they could have let off a few fireworks or something.
We’d been warned it wasn’t as dramatic as you’d expect, so we had a soundtrack playing with lots of songs that all my family and friends had loaded up for us (‘Hit me with your best shot’, ‘Another one bites the dust’, ‘I will survive’ and many other classics – no Dylan though). The infusion process took about 5 minutes, with the nurse very very slowly squeezing the syringe to put the CAR T-cells in. She’d given me a couple of pills first – a mild painkiller, and cortisone just in case there was any inflammation – but apart from that, it was very simple.
Then, five minutes later, that was that. The genetically modified cells were back and I had another chance at life.
An unexpected side effect
The only thing of note that happened was that, as the cells were being put back in, I had the distinct taste of creamed corn in my mouth. When I mentioned it, the nurse laughed and said most people say that – apparently the taste comes from the preservatives the cells are in. It wasn’t unpleasant, just a bit unexpected.
Then we waited. We hung around the hospital for a few hours, in case any complications developed, but none did. I felt the same as I had before. So, they sent us home and asked us to come back to the hospital every day for a check-up.
I was doing the whole treatment as an outpatient – I was lucky that the doctor considered I was pretty fit and health (apart from the terminal cancer…). My wife and caregiver, Katherine, was given instructions to bring me straight back if my temperature spiked, or if I started behaving strangely – well, more strangely than normal.
So, we called our family and friends, celebrated with a special dinner and then waited to see if any side effects would occur. We’d been told that if they did, it would be about a week later, so we hunkered down in the warm apartment, insulated from the freezing Boston winter, and waited…
Have you used CAR T therapy as a treatment for blood cancer?