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During the once in a lifetime experience watching my country, Wales at the Word Cup 2022, in Qatar, I thought there was something wrong, as walking and watching games, I felt really fatigued and at times breathless. I put this down to age, being overweight and unfit. However, my condition really hit home during a family holiday in Wales. I had trouble walking up even small inclines, sweating profusely, being extremely breathless and energy levels really low. I was also experiencing a pain in my chest.
It never crossed my mind or the family that it could be leukaemia. We thought it was angina. But, in reality, it was the common signs and symptoms of leukaemia.
On my return from our family holiday, I phoned the GP, and he immediately sent me to our local A&E, thinking it was something related to my heart. Three months later after various tests and B12 iron injections, I was then sent for a heart scan, but my heart was perfect. With the help of the cardiologist, who rang haematology department, I provided further blood tests and a bone marrow biopsy and a week later in October 2023 I was summoned to see a consultant and a cancer nurse at the hospital. My wife came with me, and we were told that I had acute lymphoblastic leukaemia (ALL).
I sat there, with a massive sinking feeling coming over me. My wife was crying and I was trying to rationalise “why me?” and asking what are the next steps? The consultant said I had a 70% cancer blast and that there was no rhyme or reason I contracted the disease; it was put down to my chromosomes and DNA sequencing. This was the hardest thing I have ever had to face, and then telling my children was so emotional. Two days later, I began my journey of six weeks of treatment at the hospital.
Attending hospital, I was initially treated per UKALL60+ intensive (pathway B) Philadelphia Protocol. This treatment has been in use for 30 plus years, with the aim to get me in remission and then to receive a stem cell transplant at The Christie, Manchester. Six weeks later, after receiving intensive chemotherapy drugs of vincristine, cytarabine and methotrexate and intrathecal chemotherapy into my spinal cord and brain, I was in a refractory state with a 65% cancer blast. At this point, the cancer nurse stated that I needed to get my affairs in order, as they gave me 3 months tops.
Two serious infections later, I was admitted to The Christie, where I received UKALL 14, phase2 style chemo (cyclol/cytarabine). Again, the treatment failed to get me into remission.
The consultants then asked if I would consider CAR-T. It was not something I had heard of, but with options limited the obvious answer was yes! I began my CAR-T journey and my stem cell transplant was put on hold. I had my T-cells harvested, before being sent to Amsterdam for an antigen to be added and to receive modification. I was then placed on a bridging chemotherapy for a month (navitoclax/venetoclax), which proved to be a major success, reducing my cancer blast to only 5%.
In April 2024, I was admitted to hospital, where I received the CAR-T infusion. Once again, I was in hospital for six weeks, it was not a walk in the park, being extremely ill on one occasion. Once the CAR-T had done its magic, a bone marrow biopsy provided the reassuring news that I was in remission. Several bone marrows and nine months later I was still in remission.
In March 2025, I will commence my second phase of treatment, a stem cell transplant.
I can only thank those who have supported me through this 2-year ordeal: The Christie, Glan Clwyd Cancer Centre, my wife, family, consultants, nursing staff and charities such as Leukaemia Care and Macmillan. This dedicated focus, commitment and perseverance has helped to see me through those incomprehensible times of my cancer diagnosis.
Next chapter here I come…
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).