Me and CAR-T: David’s story

David Williams was 69 when he was diagnosed with myeloma in October 2022. The following year, he became the first patient in Bristol to enroll in a CAR-T trial at first line and has been in remission ever since. Here David reflects on the positive impact the treatment has had on him and his family, how it’s transformed his day-to-day life and why he believes it should be available on the NHS.

How many treatments had you received by the time you were offered CAR-T?

I received CAR-T in June 2023 as my first treatment. I was diagnosed with myeloma in October 2022. I was in a pretty poor state. I was very anaemic, losing a lot of blood through nosebleeds. My oxygen level was terrible. I remember arriving in the hospital at the A&E unit on the Friday and, on the Monday evening, my consultant was talking to me about the prospect of being the first Bristol patient on a CAR-T trial.

What information were you given about CAR-T and your eligibility before the treatment?

I recall my trial nurse and my consultant sitting with me in the ward. We were looking at a pretty substantial document. I have to confess, I didn’t overstudy it. They were talking about a lengthy list of side effects and a whole series of different tests I would have to go through to ensure that I was fit enough to join the trial.

Did you have any concerns about getting CAR-T?

No, I didn’t give it a huge amount of thought. I knew that I was in a bad way. I’d lost a lot of weight. My limbs, when I looked in the mirror, were like sticks. So I was extremely decisive. I feel I owe my team a lot for having provided me with this fantastic opportunity.

Can you tell us what CAR-T involves? How long were you in hospital for and how does the treatment work?

The cells were taken out of me in March, some three months before I received the CAR-T, and taken to a laboratory in New Jersey, where they were modified so that when they were put back into me, they went to work to kill the cancer.

Before receiving the CAR-T, I had chemotherapy, which in my mind basically cleared the decks of my immune system, so that when the cells were infused, they had free range to get to work and kill the cancer cells.

There were some expected side effects after two weeks and I had a pretty severe fever. I can remember very clearly waking at midnight in a completely sodden bed as a result of the fever. A few days later I was discharged from the hospital and, from that point on, there was no further treatment for the cancer, which is quite extraordinary, almost magical.

Because of the potential side effects, you needed to live within 20 minutes of the hospital, which I do. I didn’t end up having any neurological issues but I was tested twice a day for any neurological side effects and that continued when I returned home.

I was very lethargic and I felt considerable fatigue during the months of July and August and probably until Christmas of that year.

But by September my paraprotein count had collapsed to single digits when it had been in the high double or triple digits. A biopsy in October was demonstrating no evidence of myeloma. From that point on, I was in remission. Within three months that was it, job done. After six to nine months the lethargy began to leave me and I returned to a much more normal life.

What was the hardest part of the treatment?

I’m squeamish so I didn’t appreciate the process of taking the cells out of me; blood going out of one arm, coming back in the other. I also had a PICC line, which I know is standard treatment, but again, I didn’t appreciate that being inserted.

Are you currently on any treatment?

I am on a four-weekly cycle of immunoglobulin infusion to remedy the reduction in my immune system. But this will come to an end one day.

What does monitoring your remission look like for you?

I have four-weekly blood tests, probably seven or eight different samples. Most of those go to the trial and I think one or two of them go to the hospital. Every two months, I go to the myeloma clinic at Bristol Haematology and Oncology Centre to meet my consultant, who will give me feedback on the blood tests from the previous month, as well as ask me for any updates on infections or any other change of state. The appointments are about 10 minutes, they’re very short. I also have an annual biopsy.

How did CAR-T impact family and friends around you?

I recall I had a series of friends come to see me before and after the CAR-T. We would sit in our front room, and they would look at me, and you could tell they were thinking, ‘Wow, this guy is not well’. As the CAR-T approached, I remember sending them photographs of the lead-up to the infusion, as well as what it was like afterwards. My friends were just amazed; they couldn’t really comprehend the impact that this genetic treatment was having.

My family knew how poorly I had been and they knew more than most what was at stake. I would say they feel, like me, that it was a pretty magical process.

Has anything surprised you about CAR-T?

I hadn’t appreciated that CAR-T was a one-hit treatment. Then it’s behind you and you receive no further cancer treatment. I wasn’t quite prepared for that. It was a bit of a shock.

Do you think CAR-T should be available on the NHS?

Yes, I do. I’m aware that it is costly. After they removed the cells, a taxi driver was waiting for my trial nurse to give him the extracted cells so he could take them to the airport for their flight to New Jersey. That clearly is expensive. But CAR-T has been extraordinary. Back in January 2023, it was extremely painful just to lie on my bed. I could feel the damage to my spine, in my ribs. I never imagined that, 10 months later, I would be in full remission and pain-free. It seems such a fantastic treatment and I would want as many people to benefit from it as possible.

What are your hopes, goals or dreams for the future?

I’m already living the dream. I used to work in Paris and we bought a home in southwest France. During my treatment and recovery, we were unable to go there. But this year we’ve already been there six weeks, which is fantastic. So, in that sense, we’re reliving or living the dream that I had when I was going through the treatment.