47-year-old Frank thought he was perfectly fine, but when his aunt noticed he was losing a lot of weight, she persuaded him to see his GP. Much to Frank’s shock and surprise, this led to a diagnosis of chronic myeloid leukaemia (CML). 19 years on, Frank shares his story here…
“I was diagnosed in 2004. At the time, I was doing a lot of exercise and did not feel in any way unwell. My aunt noticed that I was losing weight, but I had not thought of this as a problem. I just assumed my weight loss was due to me leading an active lifestyle. However, she was a nurse and persuaded me to make an appointment to see my GP. I’m not sure I’d have gone otherwise…
I remember it being a Thursday that I went to see the doctor and after that, everything happened very quickly. I had a blood test done and was called the following day to say that the results suggested a more serious problem. The GP asked me to go to hospital the following Tuesday for a consultation and further tests. Two days later, I was asked to come in and was told I had CML.
I didn’t know anything about any sort of Leukaemia at the time and my early research didn't really help. If anything, I ended up frightening myself with what I was reading - I didn’t think I would live more than six months. I was working full-time, had four children, it was all a terrible shock.
My white blood cell count was very high so I ended up off work for six weeks and started chemo straight away. I was able to do this as an outpatient, but the side effects were pretty terrible. I had joint pain, particularly in my knees and ankles, which meant I struggled to move around, but worst of all was the flaky, itchy skin rash all over my body. However, once I had the right cream to treat the rash and the side effects had started to ease, I was able to stay on that drug for the next three years and my white blood cell count started to go down.
Eventually though, the drug started failing and I had to change to another drug. I have been very lucky in that I have managed to live thanks to the progress of drugs along my journey. I have benefited from new drugs that have emerged just as I have needed them. I’m not sure I’d be here today if it were not for the progress made in drug development.
Over the years, I have been involved in a couple of drug trials, one of which triggered a major response in me and I ended up on it for years. It was so effective in getting my leukaemia under control that I was perfectly happy to live with the side effects.
In September, it will be a year since I have been on the latest trial, known as a stopping trial. My previous drug triggered such a major molecular response that I have been able to stop all treatment and have been drug-free for almost a year. I feel fine and am still going for monthly monitoring. But while my leukaemia levels are detectable, they are still considered below the acceptable level for now.
I feel very lucky to have formed some very special friendships over the years. In the early days, there was very little support available, but thanks to one of the hospital nurses, a support group was formed for CML patients in my area to get together and help each other. I have made life-long friends thanks to this group, although sadly I have also lost some dear friends along the way.
I have to give a special mention to my friend Paul who passed away some years back. We had shared very similar experiences with failed drugs and formed a special bond when we saw each other at our weekly hospital appointments. We were both waiting for authorization to try a new drug, but sadly Paul died before he had the chance to have it. I was the lucky one and managed to take the drug which worked for me.
Leukaemia can knock even the strongest of people sideways. I am a strong-minded person, but my diagnosis threw me into disarray. Awareness is so important. The one piece of advice I would give is to always get your facts from doctors or from the NHS or reliable cancer charities. Don’t scare yourself by using Google or like me, you will think you only have months to live. ”
Frank’s symptoms of leukaemia were:
• Weight loss
Are you currently experiencing similar symptoms to Frank’s? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives.