CAR T-cell therapy gave me a third chance at life
When acute lymphoblastic leukaemia (ALL) came back for a second time, Grant had a new treatment called CAR T-cell therapy. He shares his experience of going through treatment.
I was diagnosed with acute lymphoblastic leukaemia (ALL) in 2013. Hearing the words “you have leukaemia” would have been devastating at any time, but the timing was really bad. I was only 25, I’d just started a new job, and I was saving up to buy a house with my girlfriend (now wife). I was so excited about the future – I’d even bought a ring to propose – and now everything was going to be on hold.
The doctors told me I had a specific type of ALL called Philadelphia positive ALL, and this meant I had a higher chance of the cancer coming back after treatment. Unfortunately, this turned out to be the case for me.
I’ve had lots of treatment over the years, including chemotherapy, radiotherapy, a stem cell transplant and targeted therapy. Two times I got into remission, but each time, after around two years of living my life without blood cancer, I got the news it had come back.
Deciding to try CAR T-cell therapy
When I had my second relapse, my doctor said he could offer me two things. I could have another stem cell transplant, but it might not be as effective as the first. Or I could try a brand-new treatment called CAR T-cell therapy. It would be a clinical trial, and I’d have to travel to London from my home in Weymouth for the treatment.
The doctor said if I had the CAR T-cell therapy and it didn’t work, I might still have the option of trying another stem cell transplant. For me the decision was a no brainer. I had to try the CAR-T.
The first step was to collect my T cells. I sat for about four hours connected to an apheresis machine that took out my blood, removed the T cells and then put the blood back in. Some other people were in there donating stem cells, so that was really nice, as I got to thank them for what they were doing.
They then sent my T cells to a lab to genetically modify them and turn them into CAR T-cells to fight the cancer. I remember feeling really sad while I waited, because I was thinking if this doesn’t work it’s game-over really. That was really difficult. But throughout everything my wife has been an amazing support. Just a complete rock.
“Please let this work”
Once the CAR T-cells were ready, I had two weeks of chemotherapy, and then it was time for the infusion. They’d taken my blood and now it was coming back to me as this bag of greeny-yellow liquid. I remember thinking that was really cool, but also thinking “Please let this work.”
When I agreed to the CAR T-cell therapy they gave me a big list of all the possible side effects, but the only side effect I had was a high temperature. While I was in hospital a nurse would come and do a quiz every day to check if I had any problems with confusion or memory loss, but I was fine.
I had two infusions, nine days apart, and then stayed in hospital for about a month before I could go home.
The CAR-T worked and I’ve been in remission ever since. It’s been five years now, so it’s been amazing. It’s given me a third chance at life!
I think I’ve been very lucky through all my treatment that I haven’t had many side effects. The thing that affected me most was the steroids I had to take alongside the cancer treatment. They’ve caused something called avascular necrosis, which means some of the bone in my hip has died due to lack of blood supply. I’ve needed to have surgery for it and I might need a hip replacement in the future. It’s painful, but it’s much better than the alternative of not having all the treatment.
The financial impact of blood cancer
Apart from the problems with my hip, one of the hardest things has been the worries about money. Being on statutory sick pay makes things really hard. Things like the cost of travel to hospital can really add up, and there are other expenses you might not think about.
Before starting my treatment, my workmates surprised me with a card, and they’d had a whip-round to help with costs in London. That money really helped when we had to get last-minute hotels in London. My wife stayed in the hospital with me, but when she got a bad cold she had to stay in a hotel nearby instead.
Blood cancer: money and work
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If I could go back in time, I’d tell myself to get life insurance, but it’s just not something you think about when you’re in your twenties and don’t own a home.
I’ve tried to get it since, but no insurance company will touch you when you’ve had cancer, unless you can afford to pay hundreds of pounds a month. I’ve been lucky that I didn’t need too much time off work, but it was still a massive worry.
My advice to anyone with blood cancer who’s struggling financially is to find out what support is out there, and take up anything you’re entitled to. It’s hard enough going through cancer treatment, without the financial stress on top.
Ultimately, my journey has been long and difficult, but I’m still here, five years cancer-free thanks to CAR T-cell therapy. If I could meet the scientists who developed it I’d probably kiss them!
