If we die, we die, but first we’ll live
July 5, 2023
Jonathan Clark on Car-T cell therapy

I was lying in intensive care with tubes everywhere, lights blinking and machines beeping. I decided that if I ever made it out of my existential predicament, I would tell my story to anyone who would listen. This is why I am so delighted to be a patient advocate for Inspire2Live and to be able to tell the story of how CAR-T cell therapy gave me a second life.

CAR-T cell therapy uses your own immune cells to destroy the cancer cells in your body. It involves collecting T cells from the blood and genetically modifying them to produce special receptors called chimeric antigen receptors (CARs) on their surface. The receptors help the T cells recognise and attach to a specific cancer cell antigen, in case of my disease, mantle cell lymphoma, the CD19 antigen. These supercharged cells are then infused back into the blood where they seek and destroy the cancer.

There is a huge amount of research on CAR-T therapy now. Outcomes are improving all the time. There are fewer side effects and better ways of mitigating them if they do show up. The most exciting part is how the therapy is progressing to ever more diverse diseases like multiple myeloma and other blood cancers. Some even predict that it could be helpful for solid tumours and other non-blood cancers. At the same time, production costs are being driven down so it will eventually become more widely available. An off-the-shelf (allogenic) form is also being developed. Science marches on and many more lives like mine will be saved in the future.

Having said that, CAR-T cell therapy is a challenging treatment. It asks a lot of the patient and of their caregiver and all those around them. It asks a lot of the doctors and healthcare professionals too. I believe that personalised treatments like this force us to change the way we think about patients. I am not a 60-year-old male with refractory mantle cell lymphoma currently in remission. I am not defined by my disease. I am Jonathan who has a life-threatening condition and some long-term side effects such as death anxiety, sexual dysfunction, hypogammaglobulinemia, and cytopenia. All of which impact my quality of life.

No-one knows how long I will be in remission. I was the first mantle cell lymphoma patient in Europe to have CAR-T cell therapy so in a way I am answering that question myself every day. I want to live the best life that I can. I want to share my experiences in the hope that it can help and inspire others to live too. And I will keep on doing this until the day I die.

Jonathan Clark
Patient Advocate Inspire2Live