The Oxford meeting was held at the wonderful and atmospheric St Edmund Hall, on a fine sunny autumn day. It was a real privilege to be there to gain knowledge and share experiences with other patients, carers, and medical experts.
Arthur Graley, our chair, opened the presentations with a description of his recent experience as a patient having just completed treatment with FCR. He explained the challenges he has encountered since diagnosis and described how he felt during treatment. He outlined the residual issues he has been left with and, even though these have been debilitating at times, he considered that the treatment was still a good choice as he has had a dramatic increase in energy levels in comparison to how he felt pre-treatment.
After Arthur’s talk, useful group discussion took place with each table sharing their own experiences of CLL. My table discussed the benefits and potential dangers of Vitamin-D and EGCG supplements that are available without prescription. Together we agreed it is best to discuss this with your medical team, ahead of embarking on the taking of supplements.
Dr Anna Schuh, consultant in haematology at Oxford University Hospitals, and clinical head of the Oxford Biomedical Research Centre (BRC), gave a truly superb presentation in the afternoon. Dr Schuh delivered a detailed overview of current CLL management and care, and the challenges that lie ahead.
Starting with the history of early treatments, Dr Schuh moved through current gold standard treatments, and onto clinical trials, with a comprehensive review of all the new drugs entering the arena. Dr Schuh also looked further ahead and described several exciting experimental therapies under development including modified T-cell type treatments. The internal and external workings of the B-cell lymphocyte were described, helping us to understand and put into context complex scientific concepts including how the signalling works between the cell surface receptors and the internal nucleus.
It is an exciting time in CLL medicine as there are many new drugs which do not involve chemotherapy entering trial. This was balanced by the reality check that it is still early days and more information needs to be collected over time for the drugs to gain regulatory approval. It is also clear that the annual cost predicted for several treatments may be the greatest challenge in their gaining approval from regulatory bodies in these days of austerity.
Several important protocols were discussed. One we were reminded about was that people should carry an NHS card if they have been chemo treated with Fludarabine or other purine analogues, and similar chemo, and ensure they only ever receive irradiated blood transfusions.
The Importance of CLL people receiving the annual flu jab at diagnosis, and ensuring pneumonia vaccination is up-to-date was stressed. The explanation given is that as CLL develops, the weakening immune system will have a less effective response to vaccines. CLL patients will get the best protection if vaccinated early on.
James Buchanan PhD student, member of the Health Economics Research centre of the University of Oxford, rounded off the main presentations with a description of his survey on Genomic Testing, which many of us have now completed. This trial may help genomic testing become available to help clinicians decide the best therapy approach for each patient.
More information can be found at: http://www.herc.ox.ac.uk/research/cllsurveyjb/cllsurveyhome
Arthur and Garry Bisshopp (CLLSA volunteer and member of the NCRN CLL clinical trials group) finished the meeting with a call for members to assist CLLSA in its developing advocacy role, by helping identify unmet needs and areas where new areas of research may benefit us. Arthur also appealed to members to let CLLSA know of their involvement with local user/action/focus groups or membership with other bodies or charities to aid us address unmet needs, and lobby for access to better treatments.
You can read more of the meeting written from a patient’s perspective at:
When slides of the talks come available they will be posted to the website to join this article.
Thank you to all the presenters, and all who helped to organise and setup the event.
John (CLLSA member)