International Patient Meeting Report - 2008, Baveno, Italy
A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!
NEW HORIZONS in Treating Cancer
6th International Conference for Organisations Representing People with CML or GIST - A personal report
This conference, organised and funded by Novartis, provided an opportunity for users of Glivec to meet together and to exchange experiences both with each other and with Novartis. As Glivec is used for both CML (Chronic Myeloid Leukæmia) and GIST, some of the sessions were split between the CML and for GIST communities, and some sessions were plenary.
The conference was attended by about 100 people. There were many representatives from Novartis, and of the remainder about a third were Gist members. Hopefully next year we will be able to have a bigger representation from the UK so that others can feel part of this great world-wide network. There were people from USA, (including our friends Norman Scherzer from Liferaft and Marina from GSI), Brazil, France, Germany, Italy, Switzerland, Japan, Russia, Czech Republic, Poland, and Lithuania. It was interesting to think about the countries which were not represented, like Greece, Spain, and Scandinavia. GCUK had three representatives, Roger Wilson, Judith and David Robinson.
At the conference there were some very interesting presentations about research on Gist and on possible new ways of treating it. A number of new targeted drugs are in the pipeline. Perhaps the most interesting thing for us was the development of ideas about the need to use blood tests to measure Glivec serum levels. We just don't know why a given dose seems to be much more effective for some patients than for others, and what effect this may have on their prognosis. The Swiss have started doing these measurements to try to find out the answers to these two very important questions, and it will be very interesting to see what their data shows. A further proposal emerged from the conference, and this was that a mutational analysis should be performed at initial diagnosis, since the efficacy of drug treatment appears to depend significantly on the mutation. Until recently there were very few places where the mutational analysis could be done, but these facilities are now becoming more widely available. At the end of the conference a statement was produced, which follows below.
Many delegates were horrified to hear of the problems we have in the UK with getting 800mg of Glivec or Sutent. On the other hand there are some countries in Eastern Europe and South America where patients have to fight even for 400mg.
We were given the opportunity to make a short presentation about our new phone service, and this raised some interest in other groups.
Much of the value of a conference like this lies in the informal meetings over coffee and at the wonderful meals, getting to know face-to-face those you have met by email, and meeting again friends you haven't seen for a long time. The international GIST community is a wonderful force for good in this fight for survival, which we all face.
Judith Robinson August 2008
Baveno Conference Statement