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 GSUK & 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

The next PAWS-GIST clinic is happening on Friday 7th December 2018. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Edinburgh on Thursday 31st January 2019, Birmingham on Friday 8th March 2019 and Leeds on Friday 4th October 2019. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Update on GIST clinical trials that are recruiting and in the pipeline....

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.