Having felt that something was not right but being too scared to go to the doctor for a year, I was diagnosed with chronic lymphocytic leukaemia (CLL) at the beginning of 2011. I was then put on ‘watch and wait’ so that my doctor, Professor Devereux at King’s College Hospital, could monitor the progression of the disease. At that point in time the treatment options we discussed were chemotherapy based.
However, when it came to me reaching the stage of needing treatment last year (I was determined to wait as long as clinically possible) I was eligible for the IcICLLe clinical trial for the new drug ibrutinib which comes in the form of a tablet.
I feel so extremely lucky, and grateful, to the researchers for enabling treatments for blood cancers to progress so far in what is a relatively short time and to the staff at Kings for looking after me so well.
I remained active during the four years of watch and wait but by the summer of 2014 the progression rate of the disease had significantly sped up, my white blood cell count was high and for the first time Prof Devereux said that really I was too ill to be taking on cycling challenges such as the Prudential Ride London 100 (which I rode the day before I started the clinical trial).
I am delighted to say that having started the IcICLLe trial in August 2014 I am now in remission and that I have really not suffered any significant side effects. There were two major obvious positive effects of the drug. One was the visible evidence. Prof Devereux had told me that my neck would reduce within the first week, which it did, dramatically. I took photos on a daily basis and they just prove what amazing results Ibrutinib can bring.
The other thing was how well I felt physically. One of the huge benefits of ibrutinib is that I was able to continue to work and to stay active, two things I was petrified of losing, and the latter has enabled me to take on many more cycling events in order to raise money for what was Leukaemia & Lymphoma Research, now Bloodwise.
A group of my friends, and my brother and partner, got together in 2011 to form ‘Team WeNo’ after I’d seen a London Bikeathon poster at Charing Cross Station. Since then we have raised over £10,000 and ridden hundreds of miles (with some running and swimming thrown in for good measure). The aim is to help fund further research so that everyone can benefit from the development of treatment and care of people suffering from all types of blood cancer.
Also, personally, by taking on these challenges, I just really wanted to give something back to all of those people helping to beat blood cancer and who are caring for those people who aren’t as fortunate as myself.
Thank you Bloodwise!