Ron’s CLL Story
My name is Ron and I have CLL.
In 1996 I was referred to dermatology because I had red swellings above my eyebrows, enlarged swollen earlobes, a swollen and red upper lip and the top of my head was red.
Following biopsies and blood tests I was eventually diagnosed with discoid lupus.
In 2003 the swellings and redness had worsened and my GP referred me back to dermatology.
After blood tests I returned to dermatology to be told that I had a blood condition and I had been referred to haematology. During my appointment with Dr Copplestone at Derriford, I was told I had Chronic Lymphocytic Leukaemia. This was quite a shock at the time and I sat in my car in the hospital car park in a bit of a daze, wondering how I was going to tell my wife and family.
After we got over the initial shock, my wife and I made up our minds to just get on with the treatment and try to be positive about the future.
I was put on a course of Fludarabine, and at the end I was in partial remission. I had agreed to take part in the drug trials and had two bone marrow biopsies.
In 2006 I developed an ulcer on the top of my head and after many months of trying to heal it, I was treated with radiotherapy for a lump alongside the ulcer and then F.C. for CLL.
In 2010 I developed a lung infection and after scans and biopsies it was diagnosed as a lymphoma on the pleura. I was treated with F.C.R. for 5 months.
I have now been in full remission for 8 years and apart from being very susceptible to colds and infections I am leading a healthy and active life.
I hope this helps those of you who have recently been diagnosed with CLL that there is a future to look forward to and things are not as dark as they may seem at the moment.
F.C. Is a combination treatment of Fludarabine and Cyclophosphamide
F.C.R. Is a newer combination treatment of Fludarabine, Cyclophosphamide and Retuximab.