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It was February 1994 and I was 22. Like any other normal 22-year-old, I spent a lot of time socialising. I was experiencing a bit of lethargy, was throwing up for no apparent reason and was starting to lose weight without dieting. A friend of mine at the time was studying to be a nurse and thought this was strange so advised me to see my doctor. I made an appointment and, after explaining the symptoms, his initial thoughts were diabetes. Blood was taken and sent away to the lab for examination. Within a couple of days I received a call from my local hospital asking me to come in and see a haematology consultant. I went to see him that day where he sat me down and informed me that I had chronic myeloid leukaemia (CML). ‘Yeah, and what’s that?’, I said. He told me that it was a type of cancer. I simply replied with, ‘So what are you going to do?’
I’m not sure he was ready for that response. My ‘acceptance’ of my diagnosis might have been explained by the fact that over the years I’d been hit by a car which resulted in chronic osteomyelitis (bone infection) and had been diagnosed with spinal stenosis (abnormal narrowing of the spinal canal), a hereditary condition. I had also fallen through a house roof and whilst serving in Northern Ireland I had been hit by an exploding projectile.
I went through the usual bone marrow biopsy and was initially put on interferon alpha. The search for a bone marrow donor also began. After a couple of months on interferon alpha, I began to experience excruciating pain in both of my shoulders, rendering my arms useless. One doctor told me I had frozen shoulder, another put me on morphine to help relieve the pain long enough to get some sleep. At an appointment with my consultant, she asked me why I had a sling and I explained about the pains in my shoulders. She explained it was a form of chronic arthritis caused by the interferon alpha. I now had the decision to make; could I bear the pain or would I have to insist on alternative medication? I stopped taking the interferon alpha, much to the annoyance of my consultant. I was not experiencing any physical problems with the CML, so in my eyes I concentrated on the problem that hindered my day-to-day activities.
In 1997, a bone marrow donor had been found and I had my transplant. I went into hospital weighing around 224lbs (100kg) and five weeks later was discharged weighing 154lbs (69kg). The most painful side effect of the transplant was the severe blistering in my mouth. I had no energy and no appetite and the oral blistering had damaged my taste buds so everything I did eat tasted of cardboard. Post transplant went relatively well and I only experienced a very small amount of graft versus host disease (GVHD). In 1999, leukaemic cells started to reappear and I was sent back to have a top up of my donors’ bone marrow.
Sadly, in 2001, my wife and I broke up (my second wife left in 2006); my CML had finally taken its toll on our marriage. A few years passed and, despite a pretty intense operation for my spinal stenosis which actually fixed a 16-year old problem, my leukaemia was in remission.
I entered into 2004 feeling pretty good, but on returning from work in Germany, things didn’t feel right. I had a hunch something was up so I made an appointment to see a doctor and asked him to do a full blood count (FBC). My hunch was right, my leukaemia had returned with a vengeance. I was put on 400mg imatinib which brought my counts back to an acceptable level.
I began working up and down the country doing long hours and lots of travelling. I was hit and miss with my meds and constantly getting told off by the consultant. I went for a routine appointment at the doctors’ surgery and had my bloods taken. Later that day, he came to my home and asked me when I last took my meds. When I told him it was the best part of a year he was shocked and told me that what I was doing equated to suicide. My blood levels were all over the place and I was referred back to my consultant. I continued on imatinib and eventually my bloods returned to acceptable levels.
One winter, I came down with what seemed to be seasonal flu. But it knocked the stuffing out of me more than usual. A friend of mine said I had ‘man flu’ so I didn’t want to make a fuss. But one day, at my parents, I could hardly hold myself up so my father called for a doctor, who sent for an ambulance straight away. From this point forward everything became sketchy. I was placed into an induced coma and put on maximum ventilation. On Christmas Eve, the doctors told my parents that they had done everything they could and there wasn’t much hope for me still being alive come Boxing Day. But I did survive and I came round from the coma to find I’d had pneumonia and H1N1 (swine flu). I spent the next couple of months in hospital and had been left with nearly 50% lung reduction.
I started to experience more and more muscle-damaging cramps and developed a strange rash. So I was taken off imatinib and started on nilotinib. After coming down with what I thought were flu-like symptoms, I went to my doctor for further blood tests. I discovered that I had developed a rare mutation that was resistant to most, if not nearly all tyrosine kinase inhibitors (TKIs). Once my temperature and blood levels were satisfactory I was sent home and I started on ponatinib, which wasn’t resistant to the mutation.
A few years ago, I was driving along a notoriously dangerous road where I began to feel very sleepy. Next thing I knew, I was involved in a multi-vehicle accident. I simply opened the door and stepped out. I was incredibly lucky and returned to work the next day where one of my colleagues, jokingly asked, ‘How come you don’t die’?
To this day I’m still on ponatinib. Things seem to be going well, however, my life has slowed down. After everything I have been through, I think it’s time for a rest.