Summary of CML Seminar held in Manchester in October 2006

The improvement has been shown through the level of attendance, the relationship development between patients/carers and the medical professionals and the level of understanding shown by lay attendees.

The warm up session of a social gathering for patients/carers on the Friday evening, giving the opportunity for people to meet and chat in an informal relaxed atmosphere proved to be a great success in that old relationships whether on the internet or face to face were re-established and faces were put to names in advance of the following morning’s conference start. Rumour had it that one stalwart group followed this with sampling Manchester nightlife until 3 a.m.! Not us – although we did, with others, gravitate to the bar until closing time! This informal opportunity to spend time in a relaxed environment and with no time constraints provided those that attended with valuable networking and set the scene for the following day. We feel that this also lowered any inhibitions normally found when launched, as in the past, into a quite frenetic and tiring day.

Saturday was a full and informative day. Dr Guy Lucas started the day off with a welcome and introduction and was an ideal person to light-heartedly settle people into the itinerary.

The first session presented by Pro Richard Clark provided quite a lot of information about the first consultation in his perspective. He explained in interesting and understandable detail about the need to reduce white counts whether by drugs or on the blood separation machine and this raised some questions from the audience. This session seemed of interest to all but was of special interest for the newly diagnosed. All was explained in simple terms.

Pro John Goldman having recently returned from the States was his normal considered self and his theoretical talk was in less detail than previous years but put over the information well. His responses to questions was also very well explained unlike in previous years when he was perhaps too technical for the majority of the audience.

The next session gave some historical perspective but highlighted the results following the first 5 years usage of Imatinib. This was presented, again in a very well explained way by Dr Steve O’Brien. He managed to emphasise the way that the real success of Glivec had changed the first line approach to treatment of CML. The “Gold Standard” was now seen across the board as treatment with Glivec superseding the previous Gold Standard approach of potential transplant, not that this was excluded altogether but more dependent on patient choice given personal factors such as age related to lack of knowledge of outcome by Glivec alone. This session was exceptionally good in explaining the true success of Glivec.

The morning sessions ran on well beyond lunchtime but the quality of the speakers and their information meant that nobody wanted to halt the proceedings. When lunch was eventually taken, it was very good although obviously the reduced timeframe inhibited some interaction.. This is another good reason for attending the night before as there is a lot to squeeze into one day.

The after lunch session given by Roger and Jean Harris on their life with leukaemia was an excellent starter for the afternoon – a lively presentation that kept all awake. Roger was diagnosed 13 years ago and with his wife Jean they explained how the disease changed their lives and how they coped. The talks were of great value to all, whether newly diagnosed, a few years on through to the veteran.

Nicola Swann introduced herself and in so doing provided a history of counsellors within the hospital environment and the changing understanding of the need for patient involvement and support as part of the medical interventions taken by the medical staff.

Prof. Charlie Craddock next spoke on the changes in transplant methodology and following Dr O’Brien’s results on Glivec explained the parameters that still mattered when considering the possibility for transplants for patients. This produced some interesting questions from the floor.

The last formal session of the afternoon given by Dr David Marin of the Hammersmith outlined the new treatments being developed for CML. This session was of particular interest to some as the “what happens if Glivec stops having an effect” scenario is a major concern. Apart from transplant options discussed by Charlie previously, the development and trials on the new drugs derived from Glivec were explained by David. The stages of trials and the amount level of other developments was well explained and provided a very reassuring end to the “lectures”.

Breakout sessions in the afternoon covered Glivec and newer drugs, transplantation, practical issues and psychosocial support. We attended the drug development and transplantation sessions which allowed a greater depth of questions to be given to the panels. Both sessions demonstrated the easy relationship that now exists between the professionals and other attendees which allows such detailed and emotive topics to be discussed in this forum. It was exceptionally good.

There were plenty of opportunities during the day for delegates to ask questions, both during the main speaker sessions in the morning, at the breakout sessions and over lunchtime. The boundaries between questions of a personal nature were dealt with successfully by all again demonstrating the level of understanding about the special relationship that exists at these events.

We think, in conclusion, that the two main things taken away from this conference were the opportunity given on the Friday night meeting to have informal discussions and from the Saturday, the transformation within a year of what is now deemed to be the “Gold Standard” for treatment i.e. transplant to Glivec.

Phil & Babs Cowtan
October 2006