Me and CAR-T: Jason’s story

Jason Johnson was just 39 when he was diagnosed with myeloma in 2014. Over the next nine years, his cancer returned three times and by spring 2023 he was told he had reached the end of the line. Thankfully, he was able to enrol in a new CAR-T trial and has been in remission ever since. Here Jason 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 got diagnosed in 2014 and I’d had four treatments. First of all, I was on the PADIMAC clinical trial but I didn’t get a response from that. I then had an autologous transplant in 2015 and, a couple of months later, an allogenic transplant from my sister. I had eight years with no medical intervention, which was great. And then in 2022, my paraprotein started to rise again. I was put on DVD. After that I was told I had exhausted all the standard treatments available to me. But my haematologist in Bristol kept on talking about CAR-T and how it would hopefully be available through a trial. Luckily for me it was.

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

I was given quite a clear and compressive overview of how CAR-T works by University College Hospital in London (UCLH). They explained all the potential risks, including Cytokine Release Syndrome (or CRS, a potentially serious immune response which can cause symptoms like fever, shortness of breath and changes in blood pressure), along with the uncertainty associated with receiving treatment as part of a clinical trial.

Did you have any concerns about getting CAR-T?

I didn’t know how harsh this treatment was, which was a concern. Obviously, the risk of unknowns was understandably worrying. However, at that stage, I felt that it was the best option for me. I’d exhausted everything else that I could have.

What was the process of finding out whether you were eligible for CAR-T?

My consultant was in constant conversations with other haematologists and he went to an event in Birmingham where he spoke to Dr Lydia Lee at UCLH. She said that I would be a great candidate for the MCARTY trial.

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

I had my T cells collected and they were genetically modified in a lab. I had my pre-chemotherapy and then, about a month later, the T cells were re-infused back into my body to attack the cancer cells. It was intense at the start and I had CRS: I ran a high temperature, I was constantly shaking. I just did not feel well. But within 12 to 24 hours, it subsided and settled down. I was discharged on Day 16.

Obviously CAR-T is tough, but it was nowhere near as tough as my other transplants, especially the chemotherapy. I was expecting to be off work for a long time. I expected the chemotherapy to be more aggressive, but it was less invasive and my recovery time was much shorter. I was back to work within three months, which is incredible.

What did it feel like when you were waiting for your T-cells to be modified and returned?

That four- or five-week period was a bit of a waiting game. It was quite difficult because my paraprotein levels were rising at the time, to a point where they needed to potentially intervene with some further chemotherapy. I was quite anxious about it and I needed to get done as quickly as possible. Luckily, they managed to stabilise my paraproteins to a level where I could start the trial.

What does monitoring your remission look like for you?

I go to UCLH once a year. But I’ve been handed back to Bristol Royal Infirmary and I go for bloods at the local GP every three months. Every time I get bloods done, Dr Lydia Lee is in contact. She phones me up on a Friday, at 8.30pm sometimes. She’s so dedicated to her work and she cares. I do get tired, especially at the end of the week but I feel absolutely fine. I get out on my bike, can do normal things.

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

My partner had not been through that journey with me from the start – we met after I was diagnosed – so it was very difficult for her. She came to all the meetings at UCLH and stayed with me during the first part of my treatment. My parents had already seen me go through two other transplants but it’s always difficult for those on the outside because they can’t do anything about it. I tried to make them feel at ease as much as possible, but it was obviously hard for them.

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

When I was first diagnosed in 2014, the outcome and the treatments available were not as great as they are now. Until I had CAR-T, I’d never had a zero paraprotein and I’ve managed to achieve that for two and a half years. It may be expensive at the moment, but when you weigh that against the cost of all the initial treatments that other people have, I think this should potentially be used as first-line treatment.

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

Obviously, first and foremost, to enjoy the time I have with my family and my partner. We’re due to get married in August, so that’s something to look forward to. I just want to be able to do things like everybody else. I’m out on my mountain bike now and due to go to Morzine with some friends. I wouldn’t have thought I’d ever be able to do that or to hold down a full-time job. CAR-T, and my previous treatments, have been able to provide me with the opportunities that I’ve had so far and, hopefully, will have in the future.