Matthew shares his experience of diffuse large B-cell lymphoma and treatment which included CAR-T cell therapy.

In December 2021 I had COVID. The only symptom was a dry cough but, as someone who has asthma, it went straight to my chest.

Afterwards, I started to be a bit breathless, so went to the asthma clinic. They told me it might be age-related but at 48 with a very active job, I wasn’t convinced this was the case. My own thought was that this could be long COVID. By July 2022 the cough was worse, I was still breathless, and I started feeling hot in the night. I also noticed I was losing weight.

In August I went away to Cornwall with my wife Fiona and daughter Poppy for three weeks. The last week of the holiday the cough got really bad, so I went to a walk-in centre.

The doctor said he thought I had a chest infection, and prescribed some steroids and antibiotics. This cleared the cough, but only for a very short while.

About two weeks later the cough came back, so I contacted my doctor as I now really needed to see someone. I got an appointment with a nurse, who said my chest was clear but thought it sounded like a nasal drip. Decongestants were suggested, which did nothing. The cough was now unbearable, and in addition I was having terrible night sweats. These were so bad that I needed to change my bedding and clothes three to four times a night. I was also still losing weight.

I went back to the asthma clinic again at the end of September and told them I was really struggling to breathe.

They called a doctor in who sent me for a chest X-ray the next day, which showed a large mass in my lung. This is when it all started, and I was finally on the road to finding out what was wrong.

I got booked in for an MRI and CT scan and then saw a lung cancer consultant who said I had a 12.2cm mass in the left upper lobe of the lung. My wife was with me and the words: ‘This is cancer’ sent shock waves through us. My wife couldn’t stop staring at the screen. The doctor explained that a biopsy was needed to find out exactly what the mass was.

I had two chest needle biopsies and a bronchoscopy, which came back as stage 3B diffuse large B-cell lymphoma. It was explained to me that this is a high-grade non-Hodgkin lymphoma.

“Emotionally, having a cancer diagnosis has been a difficult journey. I tried hard to protect my loved ones and wanted to only share news with them when I had something tangible to tell them.

Our daughter Poppy was just 12 at the time and I wanted to protect her. But she knew something was wrong, and she told me she had seen mum crying. I also avoided telling my mum as my dad had died of bowel cancer, and I didn’t want to worry her.

I was to have six cycles of R-CHOP chemotherapy 21 days apart. After the third cycle I had a PET scan which showed a reduction of the mass of around 50%.

The cough and the night sweats had gone, and I was feeling much better in myself. I had the other three cycles of R-CHOP chemotherapy followed by another PET scan which revealed that the mass had progressed. This was a blow as I was feeling well, the symptoms had gone, and I was putting weight back on.

In April 2023, I was referred for second line treatment with platinum-based chemotherapy. This was much tougher and made me feel nauseous. A PET scan showed a good response, and because of recent NICE guidelines, CAR-T cell therapy was discussed. CAR-T is a type of treatment that uses your own to T cells from your immune system to fight the lymphoma.

For the CAR-T cell therapy, I went to apheresis to have my T-cells collected. These were then sent to a laboratory in America where they were genetically modified so they could recognise and stick to a particular protein on the surface of my lymphoma cells. The lab grows the CAR-T cells, making enough of them to treat the lymphoma. This took around 4-6 weeks.

Before the T-cells came back I had 11 sessions of radiotherapy in June 2023 then 2 days conditioning chemotherapy, before a rest. In mid-July I had the infusion of my manufactured T-cells. This was very much like having a blood transfusion except there were quite a few medical professionals in the room as the cells were infused. Once the process had been completed, the medical staff left. In truth it was a bit of an anticlimax.

I would now need to stay in hospital for at least two to three weeks to allow the CAR-T cells to work. The CAR-T cells stick to the lymphoma cells and in doing so the CAR-T cells are activated and kill the lymphoma cells.

I was in an isolation room to avoid infections and was regularly checked as they worry about neurological changes. Fortunately, apart from flu-like symptoms, I managed pretty well.

I left hospital early August and had a PET scan mid-August. I was back in Cornwall and alone on a beach listening to the waves when I was told I was in complete remission. On that beach, at that moment, I had been told the best news ever! That was such a special moment, but I also want to add that since then I have had low days, especially the week after I was told about the remission.

“I found myself reflecting on everything I have been through - the endless appointments, the 22 tablets a day, and the chemotherapy drugs.