Sixty-five patients and caregivers came from all over France to attend the second National GIST conference organized by Ensemble contre le GIST, the Association Française des Patients du GIST (AFPG), at the Leon Berard Center in Lyon, on November 22, 2008.
Though the meeting held in Paris last year was already a great success (See article in December 2007 newsletter), this event appears to be one of the most important milestones in the story of Ensemble contre le GIST. Many of the participants were new members so this event was the very first opportunity to meet peers and chat with each other, thus breaking the “virtual limits” of a discussion forum. It was the very first time people could sit together and discuss their experience with the disease and its treatments, their life-projects and sometimes their difficulties. Many people actually recognized that they appreciated this “human dimension”, which is sometimes missing on the internet. Some also admitted that the stories they heard and the people they met helped them to get to a new vision of their own situation.
We strongly believe this conference has, in many ways, helped to alleviate feelings of isolation some patients had before, as well as helped to strengthen the links between the members and lead to a better understanding of what living with GIST is really like.
Obviously, the major interest of such an event remains scientific and it was important to us to offer people the possibility to meet and exchange with renowned national GIST and sarcoma experts. Ensemble contre le GIST put together a terrific panel of GIST experts who proposed a very rich and educational program:
● Prof. JF Emile (Pathologist) and Dr. Bruno Landi (Hepato-gastroenterologist): “GIST diagnosis and mutational analysis”/“ MolecGIST & EndoGIST studies”
● Dr. Eberhard Stoeckle (Surgeon): “Surgery of localized and metastatic GIST”
● Dr. Axel Le Cesne (Medical Oncologist): “GIST and Imatinib”
● Dr. Binh Bui (Medical Oncologist): “Imatinib and Pharmacokinetics”
● Prof. Florence Duffaud (Medical Oncologist): “Compliance and management of treatment side-effects”
● Prof. Jean-Yves Blay (Medical Oncologist): “Treating resistance to imatinib: Second- and third-line therapies” & “Collaboration between A.F.P.G & Conticanet ”
● Dr. Sophie Piperno-Neumann (Medical Oncologist): “Expert patient/ Physicians relationship”
Each session was followed by a discussion. It was very educational for both physicians and members as physicians discovered that many patients were extremely well informed and patients realized that sometimes (at least more often than they had imagined) doctors don’t know the answers to all of their questions.
Patients also discovered what “compliance” was and were very surprised to learn about the rates of poor compliance. Surprisingly, when we asked the participants about their attitude towards treatment, the results were clear: everybody was 100 percent compliant. This was until the coffee break when some admitted they may have skipped their treatment “once or twice”!
This conference will remain a great memory. It took place in a very warm and friendly atmosphere where patients, caregivers and doctors could freely speak together in a different context than the one they’re accustomed to. We ended the day with a piece of cake and a glass of champagne, promising to be compliant and to meet again next year. As a gift, people went back home with a pillbox in the color of Ensemble contre le GIST.
A CD providing the presentations of the conference as well as brief summaries of the sessions will soon be sent to members and put on our website (www.ensemblecontrelegist.org) for visitors.
A.F.P.G. gets new VP
“Change has come for Ensemble contre le GIST,” that’s what French members can say since unanimously electing Christian Mercier as the new Vice President during the second national GIST conference, held in Lyon.
Christian Mercier, 62, was diagnosed with GIST in 2001 and has been taking Glivec since April 2003. Retired from the banking sector, Christian Mercier now lives with his wife Brigitte near Arcachon, in southwest France. Christian is the father of a 30 year-old son and is the happy grandfather of a grandson named Etienne, who was born in Washington DC, the day before the US presidential election.
Since he became a member of Ensemble contre le GIST in March 2007, Christian has been highly involved in the group and its different events, and is particularly willing to focus on fundraising. His sense of humanity and his communication qualities make him an excellent liaison for the whole group to whom he regularly brings support on the forum of our website.
Since June 2008, Christian also acts as the official representative at the National Cancer Institute when the president cannot attend meetings.
Mercier succeeds Madeleine Joubrel who wished to resigned from her duties.
I and the members of the board are very happy about Christian’s election and would like to wish him a very warm welcome in his new responsibilities.
