Patient Profile for: Gillian

Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Negative Prognostic
Clinical Presentation
Drug Allergies


      CD38 negative




I was diagnosed in August 2006 following blood tests for a skin condition. I was being treated for a benign lymphocytic infiltration of the skin - in other words, lumps on my ears, arms etc. I was told that I had raised WBC and ALC (of 5.3) as far back as May 2003 but no-one had reacted to it or told me. In 2006 my counts stayed fairly stable at around WBC of 20 and ALC of 16, but in March 07 they had jumped to 32 and 27. By August 07 they had increased to 40 and 33. Today I was told they have jumped to 67 and 56. All other counts are in normal ranges.

I have no other symptoms other than the skin condition which now shows as a red rash but with only a few lumps. After a recent new biopsy it has been confirmed that it is part of my CLL.

I take Dapsone for the skin and a very low dose Simvastatin for high cholesterol.

I am routinely seen at my local hospital by a haem/onc but I did see a CLL Expert in Birmingham in Feb 06. He confirmed I was CD38 negative. I asked for prognostic testing, IGVH, FISH etc. He took the blood samples for it, said it would take 3 to 4 months and that's the last I heard of it. I am following this up now that my counts are on the rise. I guess I've been a bit lax about it as I was hoping I'd turn out to be a 'smoulderer'. I guess we all hope for that!

Sometimes I really like my local haem/onc and sometimes I don't. He is very easy to talk to but brushes aside any questions about prognostic testing etc; he really doesn't seem to see the need for it and regards it as still at the research stage. He is, however, keen to talk about treatment as soon as there is a whiff of an increase in my counts! I hope to go back to the CLL Expert in the next few weeks.

Since diagnosis I've tried to get on with enjoying life. At first it was difficult (as you'll all understand, I know) but I gradually started to come to terms with it all and have recently managed to put CLL to the back of my mind for a good chunk of the time and to just enjoy life. I have 'off days' but these get less frequent as time rolls on (they're usually brought on by the thought of a hospital visit). I have a job that I like, a fab partner, a house that's a building site and lots of holidays to Greece. I know it could be better, but there again, it could be a whole lot worse........