International Patient Meeting Report - 2011, Berlin, Germany

A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

SPAEN Conference, Berlin, November 2011

A report by Jayne Bressington

A few weeks ago, Judith, Michael and I were invited to represent GCUK & PAWSGIST at the Sarcoma Patients Euronet conference. We thought that you may be interested to hear what we learned during the conference.

This was the second annual conference for organisations representing patients with Sarcomas or Desmoids tumours. It is supported by a coalition of seven pharmaceutical companies; Bayer, GSK, MSD/Merck, Novartis, Pfizer, Pharmamar and Takeda.

The conference was attended by patient and advocates from all over Europe and was at stages divided into three tracks; GIST, Sarcoma and Desmoid so that we could concentrate specifically on our specialism.

There were some very interesting presentations both from specialists and patients along with workshops where we shared ideas on innovations, best practice and useful resources in the different European Groups.

Dr Ramesh Bulusu presented an update on the progress that is being made with PAWS-GIST and it was suggested that PAWS-GIST may become a European initiative as there isn't a similar group in Europe but there are patients who are looking for help. We have received confirmation of a meeting in January 2012 with a research team at the Royal Marsden who are keen to commence a study into PAWS-GIST. There were also calls for action to help extend Dr Su Young Kim's contract at the NIH in America so that he can continue his research programme.

Dr Peter Reichardt from Germany provided insight into new treatment options, agents and clinical trials currently being investigated for GIST patients in Europe. e.g.

  • Masitinib - Phase II trial on exon 11 patients
  • Masitinib - Phase III trial in comparison to Imatinib
  • Sorafenib - 3 out of 4 patients benefitted in a German trial
  • Regorafenib - 73% benefitted in a clinical trial but that no final data is anticipated until 2012.
  • Pazopanib - being investigated
  • Dasatinib - trial underway in Switzerland
  • Imatinib + LBH587 anti-PDGFRA, D842V & others combination trial in Germany
  • IMC-3G3 monoclonal antibody targeting the whole receptor

Mr Dirk Strauss a specialist surgeon emphasised the need to seek out specialists when treating sarcomas for the following reasons:

  • Clinical presentation is variable
  • They are rare, so diagnosis is difficult
  • They behave differently from other cancers
  • They can affect any part of the body and all age groups
  • There are generally no early symptoms
  • There are over 100 differing histologies
  • They can affect all tissues, not just the soft tissues
  • Although they represent about 1% of adult cancers, it is quite common for even very experienced doctors not to have encountered one before.
  • Inexperienced doctors should not treat sarcomas as they can remove far more than is necessary.

A really exciting find for PAWS-GIST was Professor Florian Haller. He and his team have defined the optimum protocol for mutational testing and they believe that Wild-type GIST represents 10% of the GIST population. They are working to sequence Genomes & Exomes etc to identify where mutations are that are causing wild-type GIST and have taken it to the level of ultra deep sequence analysis. Professor Haller has agreed to help with the PAWS-GIST study.

Roger Wilson and the team organised a truly wonderful gathering of experts and patients to share information for mutual benefit. It was a great event and has benefited many while also helping to build a better understanding between the medical professionals, the pharmaceutical industry and patients.

Sincere thanks the Roger and the Sarcoma Patients Euronet.

Judith, Michael & Jayne

Posted: 15/12/2011