I was diagnosed in July 2009 following a routine blood test. It later transpired that it had shown up in a previous blood test 18 months earlier but had not been picked up! My GP said that I had a raised white cell count and I then received an appointment to see a Consultant two weeks later so I knew it must be something serious to get such a quick appointment. Myself and my wife went to the hospital having already pretty much decided it was some form of leukaemia but obviously we didn't know which kind.
He told us it was CLL and said that if you were going to get leukaemia then this was the best one to have! My count was 67k, my spleen was three times bigger than it should be and my liver twice the size. I was told to watch and wait and had to attend the hospital at Lincoln every three months to have the levels monitored. Within 8 months the white cell count had risen to 150k so I commenced a cycle of FCR. I was meant to have six treatments but felt so bad after five that I didn't have the last one. After the very first treatment my wcc went down from 150k to 20k and by the end of the 5th treatment it was down to normal. It's been two years now since the FCR and my count is still normal.
Almost as devastating as being told I have CLL was when my GP told me that I should stop working as this was a major change to my life. However, I feel that not enough information is given regarding benefits etc. as I didn't realise I could have claimed DLA from first diagnosis and missed out for over a year.
I recently went to the CLL event in Cardiff and learnt a lot of very interesting facts regarding CLL and the current research. They said there could be a cure in 5-10 years time which was very encouraging. The main question I had for the experts there was whether it would be more beneficial for me to ask for referral to a CLL specialist when my levels start to increase again. Although I have no complaints with my treatment so far, I only see a haemotologist not a specialist and I didn't want to miss out on any cutting-edge developments in the treatment of this disease. I was advised that I would undoubtedly be better off under the care of a CLL specialist so I am planning to ask for a referral at the first signs that my counts are on the rise again.
I hope this account might be helpful to others with CLL, I realise that everyone's experience is very different but if you need any further details regarding the above please feel free to ask.