I’m 67 years old and I was diagnosed with chronic myeloid leukaemia (CML) in September 2004. After enduring a few months of symptoms, including fatigue, tingling in the extremities, night sweats and a swollen stomach, I decided to visit my GP. He knew it was an enlarged spleen; he didn’t tell me until I got a phone call two days later.
I was then referred to the hospital under the ‘two-week wait’ scheme, where I was diagnosed with leukaemia. I knew it was cancer of the blood but I didn’t realise how many, if you like, varieties there were.
I was told that my chances were good and began treatment the same day I received my diagnosis. However, I suffered side effects. As a result, I changed drugs four times. Nilotinib was the first, then imatinib, then a trial on dasatinib, which was working well but it caused me to retain fluid mainly between my chest wall and lungs. So, I am now on bosutinib, which is again working well, but I believe that there are some side effects.
The dasatinib trial was recommended by my consultant due to no alternative treatment options being available at the time. I was glad I participated in the trial. As I said when it all started, whatever’s new, if my stuff isn’t working, just point it in my direction and go ahead with it.
However, my diagnosis meant I had to stop work as a sales manager of a company that provided products to the picture framing industry, and I had to drill down on most of my pensions.
Having had a triple coronary artery bypass grafting (CABG) in September 2000, then being diagnosed with CML in September 2004, followed by the initial treatment, I guessed that someone was trying to tell me something! As a consequence of my condition and the subsequent treatment (which I have to say did have its side effects of fatigue and quite severe skin rashes) I made a decision to stop working and take early retirement.
I was given support and information booklets from the hospital’s own services. I was also accessed a Clinical Nurse Specialist. That happened last year when I was in hospital. I was away on holiday in the UK. I had a very bad chest infection, came back home halfway through, got to the doctors, and they sent me to hospital. They then admitted me, but I was on a respiratory ward, so the doctors ignored me there because I was down as a haematology patient, and haematology weren’t aware that I was there. I had fallen through a gap somewhere, so off my own back I organised a specialist to come and see me, but I had to do that all on my own, as it were.
I now have regular check-ups every three months, and I’m very pleased to still be here alive and kicking, albeit gently.
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk