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I regularly gave blood and had a letter in July 2011 from the blood and transplant service saying that they hadn’t been able to accept my last donation as the laboratory were unable to filter it and that this had happened before. They advised me to see my doctor.
I had a blood sample taken and a couple of weeks later I was then told by my GP, one Friday evening. to go to hospital straight away as there was a bed waiting for me. There was no other explanation given at that stage. When I got to hospital, I was seen straight away, at the ward I had been asked to attend, and was told that I had leukaemia but that in all likelihood it was treatable and further tests would confirm this initial diagnosis. The hospital informed me that I probably had chronic myeloid leukaemia (CML) and this proved to be correct.
I had no symptoms other than a minor problem with my eyesight (for the previous two to three years) that neither the GP nor an optician could diagnose. On commencement of treatment this disappeared.
Initially whilst in hospital for the first week after diagnosis, I was given some intravenous chemotherapy and a saline drip which had no detrimental effect on me. I had been warned that I would probably be infertile, but as I had undergone a vasectomy this was the least of my worries.
The initial days before CML was confirmed were very worrying due to the uncertainty of my situation, probably more so for my immediate family than me. During this time, I felt perfectly well physically. After it was confirmed that I did have CML, I was asked if I would participate in a drug trial called Spirit 2 which would last for five years. This had been designed to test the effectiveness of imatinib v dasatinib as a first line of treatment. I agreed and was allocated (at random) to take dasatinib – the drug being trialled. I received regular blood tests initially every few days then quickly moving to weekly and then steadily longer, moving to three-monthly after about six weeks. The drug brought my leukaemia under control fairly quickly, although there were some side effects (muscle aches and spots amongst others). These weren’t too bad when you considered what the drug was doing.
In addition to the three-monthly blood tests and consultant appointments, I also had a bone marrow sample taken for analysis every year for the length of the trial. Whilst all this was going on, I was able to continue with my life as normal, working hard in a fairly stressful environment and playing sport, mainly football, squash and golf. I also did a bit of running to keep fit.
After three years of being diagnosed, I started to feel short of breath, which I put down to working hard and long hours. However, the symptoms continued whilst I was on holiday, so I discussed this with my consultant at the time. He arranged an x-ray and identified a small build-up of fluid on my lungs and prescribed a mild diuretic, which I only took for a few weeks because I wasn’t happy with the side effects. Nevertheless, the symptoms seemed to improve, so I thought nothing more of it and assumed the problem had gone.
However, in May 2016 I was admitted to hospital with pneumonia. Further investigations revealed that I had pleural effusions as well as pneumonia. I was given a chest drain to my left side and seven litres of fluid were drained. I stayed in hospital for a total of three weeks. At this stage my consultant withdrew me from treatment with dasatinib – I was at the end of the five-year trial period anyway – and recommended that I take nilotinib in its place.
A couple of months later I was readmitted with mild symptoms (not pneumonia) and a further two litres of fluid were drained from my other side. I started the nilotinib in September 2016 and it worked well and continued to control my leukaemia. Although I experienced some minor side effects, my breathlessness recovered, and I was able to play sport actively again. However, in May 2017 I was readmitted to hospital with what appeared to be pneumonia, although this was never confirmed. After 10 days, I was discharged and felt OK again, albeit still very breathless. My consultant has steadily reduced the dosage of nilotinib to identify the minimum that I need to keep the CML under control. This reduction has also corresponded to an improvement in my breathlessness.
I was also referred to a consultant rheumatologist who has seen me in several clinics with a respiratory consultant and, after a few tests, they recommended that I take a diuretic again. Since I started taking this, I have noticed a significant improvement in my lung function. This, coupled with the reduced dosage of nilotinib, has allowed me to participate in sport and exercise again.
My heart and liver function are still not right, but this may or may not be as a result of taking nilotinib; I am currently having tests to determine this.
In conclusion, I have to say that throughout this period I have had very good care from the NHS hospitals in Sheffield and have been encouraged to ask and understand as much as possible about my health problems.