Matthew

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, so 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. The X-ray 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.

Matthew

 Emotionally, having a cancer diagnosis has been a difficult journey. I tried hard trying 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 lab 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 followed by 2 days conditioning chemotherapy, before a rest. The infusion of my manufactured T-cells took place mid-July. There were quite a few medical professionals in the room as the cells were infused, which was very much like having a blood transfusion. 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 was alone on a beach listening to the waves when I was told I was in complete remission.

Matthew

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. But then it just stops and I felt lost in a way. I asked my wife Fiona ‘Why do I feel so low when I have just had the best news?’

I have been lucky to have lots of support and would encourage people to talk. Organisations like Lymphoma Action are a tremendous source of support and it really doesn’t help bottling things up. My colleagues did a Snowdon walk earlier this year because of what I had been through and raised over £4,000. 

One thing I would like to say is that you know your body, and when something is not right persist with your GP. I feel I wasted time going back and forth until I actually saw a doctor who took my concerns seriously and had them investigated. Being told I had a nasal drip or that it was because of my age makes me angry to this day.

I feel indebted for the research being carried out in cancer treatments. Before starting CAR-T cell therapy, I was aware of a film called War in the Blood which covered two people on the first trials for CAR-T cell therapy. Unfortunately, they did not make it, which put a doubt in my mind about having this treatment myself at the time. But it is because of people like this that treatments are advancing, and I – and many others - would not be here today if it weren’t for these people. They, along with the medical experts who learn so much through clinical trials about efficacy, side effects and how to manage them enable treatments to move on.