I was diagnosed with stage 4 non-Hodgkin’s lymphoma in 1996 when I was 45-years-old. I had treatment for about six months, mostly in hospital, as part of a trial at Leeds General Hospital. After the chemo ended, I had an autograft bone marrow transplant and was declared cancer-free. There were 33 patients on that trial and I am the only one still to survive, so I feel very lucky to have lived to tell the tale.
Then last summer, I started experiencing heart palpitations. I was still playing golf, exercising, getting on with life. I’m not sure I’d have gone to my GP, but my wife is an ex-nurse and she encouraged me to get it checked out. The doctor did an ECG and a blood test. The ECG suggested atrial fibrillation and I was prescribed Aspixaban. I asked to be referred to a cardiologist and within weeks I was told that my heart was actually fine and that there was no need for me to be on any medication.
However, the blood test revealed a low white blood cell and platelet count, so it was repeated a month later and then another month after that. Each time it was lower so I was eventually referred to haematology.
Further blood tests were carried out, as well as a bone marrow test. The bone marrow test came back positive for AML – therapy related. It was 29th September, my wedding anniversary that I received the news.
I started treatment on my birthday – 24th October, spending the first week in hospital. Treatment consisted of seven days of Azacitidine injections and 28 days of Venetoclax tablets. This was a new combination, only recently approved by NICE. I was also on all the daily ‘anti’ tablets. I had six cycles of treatment over six months. Side effects were initially minimal, but during the last two cycles I suffered with severe bone pain.
After three months, I had a bone marrow test which again came back negative – there were no leukaemia cells in my body. I received the BM genetic result just before my sixth cycle of chemo and took the decision to go ahead with it anyway. My last chemo session ended in March 2023 and another bone marrow test at this point, again showed I was clear of the disease.
I am still on antiviral treatment and am having blood tests monthly and bone marrow tests every three months. Since my non-Hodgkin’s lymphoma diagnosis all those years ago, I have always been very protective of myself and try to avoid crowded public places to reduce my chance of infection. I continue to protect myself today. It is hard not to feel stressed waiting for my bone marrow test results each time. I am expecting my next BM result in the next few weeks and am hoping that this will indicate that I am in remission. I have been told what options would be available to me if the AML comes back and none of them are very nice. So until then, I have my fingers crossed and the champagne ready.
I am aware that my AML will probably be the thing that gets me in the end, but hopefully not for a very long time. The hospital has been delighted with my results and one of my consultants has told me that I have shown the best response he has ever seen to the new treatment combination I was on. I know that I am lucky to have had cancer twice and survived.
I would like to thank all the people who have helped me get this far: my GP, the staff and nurses at the hospital and of course the consultants. Also the Macmillan nurses who have been super. I must also say thank you to all my family and friends who have supported and encouraged me throughout.
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