Report on the Southampton meeting 1st July 2013


Travel to July’s meeting at Southampton General Hospital was assisted by good weather, was well attended and enjoyed by a good many. Dr Duncombe’s talk was very extensive, focussing on some very important areas. One of those was about CLL immunity issues which included CLL self-help, prophylactic antibiotic medication and vaccination strategies that are important for CLL patients. This was also expanded on in his Q&A. His power point slide detailed CLL specific and the most current recommendations about annual flu vaccination, also pneumonia, Hib and meningitis vaccination strategies too.

Dr Duncombe spent a while reviewing new treatments in trial and their prospects and focussed on the success of UK involved research and drug developments likely to come available for us that will work. He spent some time reviewing performance graphs between Rituximab and Ofatumumab . Showing us how successful this new humanised monoclonal antibody therapy is at targeting CLL cells, even for those with little CD20 which will not respond as well to Rituximab. Both new next generation monoclonal antibody therapies, Ofatumumab and Obinutuzumab, are currently entering the UK approval system and CLLSA as a stakeholder is involved in the consultation process.

Several trials were explored involving the new BCR inhibitors. Several may be coming available to the treatment naïve which compare different conventional combinations against those including the new inhibitors. These are offering several less toxic treatment options within the clinical trial environment. Some also have the important feature that they allow cross over at the end of the trial term to the other arm if disease continues to progress.

I feel sure Doctor Duncombe’s talk did not leave people feeling they may miss out. He confirmed that even some of those requiring first line treatment that are suitable to receive FCR will be involved in trialling the latest small molecule pathway inhibitors. CLL10 is planned to launch in November enabling some to enter a randomised trial of the BTK inhibitor Ibrutinib plus Rituximab versus FCR. It is an exciting time as there were updates given on several of the trials coming available for different populations that involve Ibrutinib and other inhibitors such as Idelalsib GS1101/Cal101.

Thank you Dr Duncombe, the Southampton trials team and the patient panel for a very interesting question and answer session, which the doctor extended until time allowed. The relaxed and informal coffee time chat was enjoyed and engaged everyone, the Q&A had to be halted to allow us all to depart. Thank you Andrea for chairing an event that was relaxed and very informative and to Sarah for her work setting it up and manning registration.

There were more smiles evident on people’s faces as they were leaving. It was a very comfortable meeting; a big thank you to all who joined us and helped put it together. It was special for me as I got to meet for the first time several who I spend so much time with on line. As I conclude this report more news has come in from research that adds much hope for those feeling trapped with FCR treatment. Andrew Schorr at Patient Power provides a video that touches on the thinking about those still in remission after 9 years post FCR. “Is Long-Term CLL Remission with FCR a Cure?” - “This is the first time in CLL the word "cure" has been discussed in relation to a chemo-based regimen.”