There were just over 50 people at the meeting on July 15th. Dr Duncombe, the speaker, is an expert in CLL drug trials. Drug trials build on the best treatment available for a specific type of CLL patient, you never get a placebo treatment. The standard of care given to the patient who takes part in a drug trial is extremely good.
Often, drug trials will allow the doctors to give drugs that are known be effective in CLL that are not available on the NHS. If you are coming up to treatment and want to consider a trial, read the UK Clinical Trial Gateway. Then ask your own consultant for a meeting with a doctor at your nearest trials centre.
After a splendid lunch, the attendees divided themselves into groups to discuss CLL based topics that were concerning them.
We can’t solve all our own problems, but the general opinion was that everyone discovered points in common with other CLL patients or carers, and went home feeling that there were areas of their CLL they could not manage better.
Many thanks to Ms Dashwood, Haematology manger, who organised this event; to Wayne, the technical support manager for being both helpful and mega competent; to Dr Duncombe and to all of the Trials patients who turned up to help and give us their experiences, particularly Mr Oliver who got into the hot seat and allowed us to ask questions.
We are planning a repeat of this meeting in 2013.