This is my 1st post. I was diagnosed with cll in May 2008 and been on w&w since. In march this year
nodes mainly on left side of neck became more pronounced and spleen increased by 1cm. Had biopsy
on left side under jaw. Went ok but then in Sept became enlarged again and spleen more enlarged too.
I saw Prof Andrew Pettitt at Liverpool Royal yesterday and he has offered me access to the CALiBRe trial taking only Idelalisib. I can only find info on people who have had previous treatments and receive the drug in combination with Rituximab and who also have the 17p deletion. I on the other hand am treatment naive and do not have the 17p deletion. My dilemma is this. Do I take the chance to go
virtually blind into this trial and accept the probability of succumbing to the side effects, diarrhea/colitis,
pneumonia etc and without knowing the long term effects or should I decide to go down the fcr route with a little more knowledge to hand. The trial is only for 40 participants accross the UK over I think a 2 year period which make me wonder that they are suspicious of this drug. I would be very interested to hear from anybody who has any experience themselves or friends/family. I have to decide by tomorrow whether to take part or not and am feeling very nervous about doing so. Any replies welcome.