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

NEW HORIZONS in Treating Cancer



The Bad Nauheim Conference Centre


5th International Conference for Organisations Representing People with CML or GIST - A personal report



The closing dinner



Finally, a huge "thank you", to all those, including Roger, for the work done in organising the conference, and to Novartis for their funding and support.

Judith Robinson August 2007


The thinking behind this conference, organised and funded by Novatis, is that Glivec is used for both CML (Chronic Myeloid Leukæmia) and GIST. Some sessions were for everyone, and some were in two groups, for CML and for GIST representatives. There were about 90 representatives from 24 countries, and the very warm welcome from the German hosts told us that the official language for the conference was "Bad English". It was quite humbling for us native English speakers that only about six people needed interpreters, and many of the presentations were by non-native speakers in wonderful English.


GSUK had three representatives, Roger Wilson, Judith and David Robinson. Roger was on the organising team and had a very active role as moderator and contributor to the discussions, especially in the production of the Bad Nauheim Declaration.


The GIST-specific meetings were:



  • State-of-the-art Management of Gist



  • The Role of Surgery in Gist management



  • Management of Progressive Disease. This included an up-date from Novatis.


Each of these sessions included a discussion.


The key things for me, were:


  1. the amazement expressed by the other Europeans at the difficulties we in the UK are having in getting Sutent and more than 400mg of Glivec. However, the Eastern Europeans and South Americans often have a harder time than we do. In Romania, every patient has to fight for any Glivec, and may have to wait 6 months or more - too long for all, and some die before getting it.




  2. that Prof Jean-Yves Blay from Lyon, has several patients on continuous, but lower than normal, doses of Sutent. The patients themselves find a dose which is tolerable. These lower doses can produce stability and good quality of life. I also heard that there are some German patients using this regime. One gives herself a week off when she feels she needs it. This is an example of real collaboration between doctor and patient, together improving both quality of life for the patients, and medical knowledge. The results from this use of lower doses of Sutent are not published yet, but there is a paper being written




  3. that mutational analysis is getting more available and is being done more often. This has not yet affected the use of 400mgs of Glivec as first-line treatment for inoperable or metastatic GIST. There is thinking that this may soon change.




  4. that surgery looks great fun! Peter Hohenberger gave us almost a DIY instruction talk, with lots of photographs, but it was clear that we "shouldn't try this at home". Then we realised that most of us been at the receiving end. Food for thought, and great gratitude for the surgeons who had saved us.




Then we took Roger's draft of the Bad Nauheim Declaration, and made a number of changes to produce the final document, which we all signed


Finally, one representative from each patient group said a few words about what they were doing. Some groups are very active, some just starting, and GSUK is somewhere in the middle.


The non-GIST specific meetings included:



  • making alliances with other groups



  • running patient groups



  • legal questions about intellectual ownership and patent law



  • patient input into designing clinical trials




The final session was on the emotional effects of having a life-threatening illness. First, Marina Symcox, whom some of us know from the GSI group, gave a very moving account of her own experiences. Then Andrea Schumacher, a psychologist talked about her work with patients.

Then we had to say goodbye. 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.

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.