I originally asked the doctor for a cholesterol blood test and within a couple of days, I had been sent up to Queen’s hospital to the Haematology department and had a Bone Marrow Biopsy. It was after this that my diagnosis was confirmed. If any, my symptoms were unexplained weight loss (I had lost around a stone) and a cut that took slightly longer than usual to heal. I had heard of leukaemia before but didn’t have much knowledge. The only thing I can remember is a gold medal athlete years ago had some sort of cancer and I think it was leukaemia.
Within about two/three weeks, I was placed on the Spirit 2 trial, which was randomised between Dasatinib and Imatinib, and was put onto Imatinib. While on this trial, my weight had improved a great deal.
After two years, in December 2012, I had a relapse and was put onto 800mg (two lots of 400mg a day) of Nilotinib (also known as Tasigna). I was having some problems with weight loss and I didn’t feel brilliant, but Kate Williams – a nurse – was excellent in giving me a lot of time and suggested a few diet changes to consider, including avoiding semi-skimmed milk and sticking with full fat dairy products. I had a number of other side effects from this including a bad stomach, tiredness and fatigue and generally was feeling less motivated to do things.
During an AGM that I went to in Manchester, a professor, Stephen O’Brian, pointed out 600mg a day is the recommended intake which led me to speak to my doctor about reducing my dosage. Positively, my dosage was reduced – to 600mg a day – and so these effects improved.
Most recently, about six weeks ago, my dosage was reduced again – to 400mg a day – and so I am waiting to see if the effects will get even better, such as my weight and heartburn. Due to the new reduced amount of medication, there is a need for it to be reviewed, and more frequently.
I was not really pointed in the direction of information until I was given a CNS, named Pam Benson who helped me during the trial. She helped me to feel better and more positive and, after about four or five months of seeing her, she suggested going to CML support groups to find out more information as well as using the internet, but this isn’t something I do too often as I struggle with the computer. I have attended meetings in Oxford, Newcastle and Manchester and have also been to a forum at Hammersmith Hospital a few times which has been very useful.
Despite not telling people that I have leukaemia, I feel that my journey, overall, has been excellent.