Diagnosed at 38 a few days before Christmas 2011 with my then 2 year old daughter on my lap, I was told I had Chronic Lymphocytic Leukaemia (CLL), an incurable disease where the average patient with my prognostic markers could expect to live for 5 years. The average patient, however, was a 70 year old man. A year later I became so sick I required treatment and had 3 cycles of a chemotherapy known as FCR. My remission only lasted 6 months and it looked very much as if I was going to have to have an allogeneic transplant using stem cells from a donor to save my life. This is a difficult treatment and, while, if it works the benefits are long term control of the disease, the risks are high and mortality rates and quality of life issues made this something I wasn’t ready for. I began a global search for an experimental treatment after realising that my options in Australia were limited. In November 2015 I began a clinical trial at Barts Hospital in London of two drugs which have not been used in combination before – one of these is ABT-199, now known as Venetoclax, which was ironically invented in my adopted hometown of Melbourne. I feel very privileged and grateful to be on this trial and this blog is designed to help other patients who may choose this path down the track. It will be a bit technical for my non amateur haematologist friends but the CLLers it’s aimed at will understand.