Report on the CLL Support Association Cardiff Meeting - 30th January 2013

It was good to see so many new and familiar faces on the day. Thank you to all who travelled some distance.

You are probably all aware of the changing landscape of CLL therapeutics. There is much to support the feelings of optimism as novel testing and treatments commence clinical trials. Much of the reason for this optimism was discussed at Cardiff.

Professor Fegan discussed the new treatments in his familiar lively manner. It was a talk that gave us more understanding of the progress being made along different research pathways and which novel therapies are advancing into clinical trial and how things may unfold in the UK.  

Perhaps to counter some of the unrealistic belief of how readily available trials are, treatment was discussed from a UK perspective. It soon became clear that there are limitations and that treatments in trials do not automatically progress to standard of care. It is early days and novel drugs are to be trialled in less well populations first and particular at research centres. As a clinical trials expert Professor Fegan didn’t pull any punches, this kept my feet on the ground as it became clear that change will happen slowly.  

(There are several trials taking place in the UK and a list of non-commercial and commercial trials being conducted under the auspices of the NCRI )

The podium was then Dr Pepper’s, he is one of the UK’s leading CLL researchers and an expert on prognostic science. Dr Pepper explained the relevance and use of current testing technology, proven markers and their value as prognostic indicators.

Amongst others, monitoring and graphing lymphocyte doubling time is still one of the most reliable and cost effective independent prognosticators used in CLL management.

The Cardiff group published a definitive prognostics paper last year that explains the current UK position from data collected from a very large group of patients: “Defining the prognosis of early stage chronic lymphocytic leukaemia patients”. The paper has been discussed by CLL topics at

In the future, improved testing at diagnosis and at treatment may direct targeted therapies to better treat the individual. Many novel tests are being worked on that when combined with novel treatments may get us closer to the holy grail of individualised CLL medicine.

Chris Pepper's work with telomeres was really interesting, (A telomere is the region at the end of a chromosome). Telomere length can identify prognosis of CLL patients. CLL patients that have shorter telomeres have more progressive or aggressive CLL. Shortened telomeres tend to allow chromosome ends to fuse together dislocating information that is clearly visible when a genome is sequenced.  

After a brief lunch we were able to get together in group discussion. Both the professor and doctor joined lively conversation groups. Towards the end of the session it was difficult to signal time as everyone was so deeply immersed. This brought the busy CLLSA section of the day to a close.

It was pleasing to note how many then stayed for the academics’ presentations. Sharing the day with the research team on their patch in their research centre lecture room and then being able to attend their annual meeting added something to the experience for me. It was fascinating to watch the academics as they explored their work. It was a privilege to be able to witness how dedicated they are and it is reassuring that they are one of many national and international teams working on a solution to the problem.

Nick York.