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

NEW HORIZONS in Treating Cancer





The Gran Dino Hotel and Conference Centre Baveno


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. GSUK 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






Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. 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.