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In 1999, I was being treated for an abscess on my rectum, and whilst being treated my GP took a blood test because she didn’t like my pale colour. Two days later, I received a call from the hospital that my test result was of concern and could I come in very quickly. My wife and I went straight in and we were told by Dr Miller, a haematologist, that I had what they thought was non Hodgkins lymphoma, but one final test result found that I had hairy cell leukaemia (HCL), a very rare but treatable leukaemia.
The news was worrying but Dr Miller was reassuring, stating that she had a good knowledge of the disease.
Treatment started two days later with a bone marrow aspiration to see how much my bone marrow had been affected. A few days later I started my chemo, which was 12-weekly infusions of pentostatin. After the first treatment my immune system was very low, and I got an infection and was in hospital for five days. After that, I was back home and, apart from tiredness, I wasn’t too bad.
Weekly chemo went well, and the staff were wonderful. Later in my treatment my levels began to recover, and after four months my levels were almost normal and I was feeling stronger. A further bone marrow test showed negative HCL, so in remission and back to work and playing sport as normal.
In March 2001, I had my blood test which showed that I had HCL again. So, everything was repeated. 12 treatments of pentostatin, various tests, and all went very well again. In August 2001, I was again in remission.
Back to work and sport again after 12 years of yearly tests and not even thinking about HCL, my tests then started to show my blood levels were getting lower. So, I was put on Watch and Wait and, in March 2014, I was again starting treatment.
This time I was having five stomach jabs of cladribine, five days running. On the evening of the fifth day I was feeling very tired and my temperature was very high, so I called an ambulance and was told that I had six different infections and spent seven days in hospital. During that time, I got sepsis and was put in an isolation ward, and also had three blood transfusions.
I recovered and was sent home before starting rituximab infusions once a week for eight weeks. No more drama followed, and so in August 2014 I was placed in remission and have been there since.
Since the cladribine treatment, I have suffered from joint pain which has eased, but apart from that I rarely think of HCL now.
After the 2014 treatment, I gained a lot of weight due to being too old to play active sport and due to steroids during treatment. I was feeling very down and reached 25 stone. However, in January 2018 I joined Slimming World and since then I have lost almost 7 stone. I gym every day and started golfing again, so life is good again. I have yearly blood tests in September and hardly think of HCL. My advice is try to stay active and be positive.