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


We had a very successful meeting at Chandos House in London on 26th October, attended by over 50 GIST patients and their carers.

After coffee and lunch, the meeting started with the chair, Judith Robinson, noting that it is now five years since this group was formed. She highlighted the Shared Experiences website run by Novartis, and our own interactive website which is bringing new patients to the group. She went on to welcome Dr Beatrice Seddon, a Consultant Oncologist specialising in GIST from the Sarcoma Unit at University College Hospital, and Ms Cerys Propert-Lewis, who is a Clinical Nurse Specialist from the Sarcoma Unit at the Royal Marsden Hospital, who were then available to answer our questions.

Question and Answer Session

Question: What are we doing about genetic analysis for GIST patients?


Answer: BS described the nature of the genetic mutation of the tumours in GIST patients. She gave a clear explanation for those who had not seen it on this website. The relevant part of the information is that we now know for sure that those with exon 11 mutations respond best to Glivec. Those with exon 9 also respond, although fewer patients respond, and for a shorter time. There is some evidence that these patients may respond better to a higher dose (800mg) of Glivec.


A phase 2 study of Sutent in patients who have relapsed on Glivec shows that tumours with exon 9 mutations respond better than tumours with exon 11 mutations. At the moment Glivec is given as first line treatment for patients with advanced metastatic disease. There is no move at the moment to give Sutent prior to Glivec in such patients.


Question: Are we too slow in getting genetic information for all GIST patients when the Americans are all going ahead with this?


Answer BS: At the moment mutational testing is done in a few places in the UK, but is very slow and there is a backlog at the moment. There are more laboratories preparing to do it. The mutational status of primary GISTs is of purely academic interest at the moment, as are secondary mutations, because it will be a while before we can allocate patients to specific drugs according to their mutation.


An attendee commented that it is possible to arrange for gene mutation testing to be done in Belgium for 300 Euros. However BS commented that it would be best to have a discussion with one's oncologist before getting this test done.


Question: How does 400 mg compare with other doses of Glivec?


Answer BS: Some patients have their Glivec dose reduced to below 400 mg because they cannot tolerate the side effects. This is the only reason that the dose should be reduced below this level, however well it is working.

After primary surgery, Glivec should not be given as a preventative measure - there are no study results yet to show that this is the right thing to do. In addition, Glivec is not licensed for this use, so as doctors we are not allowed to prescribe it in this context. (There are studies currently underway, investigating the use of Glivec following complete surgical removal of a tumour.) All those who have had primary surgery should be followed up with regular scans. The frequency of these scans depend on the risk stratification of the tumour as defined by current UK GIST guidelines.


Question: Doctors often need information about GIST and Glivec, and are not aware of what interactions there may be between Glivec and other drugs.


Answer CP-L: Pharmacists are the best people to ask for information about this, as they have access to the necessary reference books and web sites. One patient commented that he has a carry-around card to say that he has GIST, what his medication is, and what should or should not be prescribed. It was produced by the German GIST group, and it has been agreed that GIST Support UK should get this type of card organised and distributed. Many drugs such as sleeping tablets actually enhance the effects of Glivec - others inhibit it. We now know you can have grapefruit juice as long as it is not within 2 hours of taking Glivec.


Question: Does a needle biopsy take enough material to get a mutational test done?


Answer BS: Perhaps, but more tissue may be needed. There is always a small risk that a biopsy can "seed" cancers.


Question: 800 mg is giving me bad side effects. Will 600 mg or less give fewer?


Answer BS: Side effects often get less in time. You could try to cautiously decrease the dose to see if the side effects decrease to an acceptable level. However, there is not a lot of information on the efficacy of the drug at 600mg versus 800 mg, only for 400 mg versus 800 mg.


Question: Should a consultant give a patient a life expectancy if this is not asked for?


Answer: Each doctor has their own personal style and BS said she only gives the information that she thinks the patient indicates he/she wants. Roger Wilson said that if you are really concerned about the way you have been treated, it is very important to go to the PALS (Patient Advisory and Liaison Service) manager at your hospital who will look into the problem. This may help other patients, so do it even if it is difficult for you.


Question: Do alternative or complementary treatments help, and what about diet?


Answer BS: There is very little information available of the effectiveness of such treatments, but she knew that many patients want to do something to help themselves. She sometimes refers patients to the Royal Homeopathic Hospital in London, where there is a clinic specifically for cancer patients.


Question: If a hospital or Primary Care Trust (PCT) refuses to fund Sutent, what next?


Answer BS: There are many new drugs being trialled, but apart from Sutent none has been licensed for use as yet. NICE has agreed to review the rules on Glivec - (currently it must be withdrawn on disease progression and cannot be given at doses above 400 mg.) BS said that some PCTs have given permission for higher doses, although many have declined to provide funding. A survey of those present was taken which revealed that no one on Glivec doses higher than 400 mg was funded by a PCT. One person was BUPA-funded, and another had 400 mg funded by their PCT and another 400 mg from a hospital budget. Two were on Sutent and another patient is about to start a clinical trial with a new Astra-Zeneca drug. NICE may look at Sutent at some point in the future, although there are no immediate plans as yet. Very clear evidence of benefit will be needed for a positive decision from NICE.


Question: What is the role of surgery for metastases?


Answer BS: It is now thought that it may be the right thing to remove metastases following Glivec treatment, when they have reached maximum shrinkage or stable disease. If all disease is removed, the patient could take a holiday from Glivec until it is needed again (if the disease recurred), although no one knows definitely whether Glivec can be stopped in this situation or not. Several recent studies have shown that surgery is of no benefit for patients who have clearly progressing disease.


Question: Why are there so few trials for new drugs in the UK?


Answer BS: The UK has many regulatory restrictions that make it difficult to open studies quickly. This makes the UK an unattractive trial location for drug companies. Roger Wilson said that new moves by the government have initiated a group to help companies with this problem. There is also a new European group of GIST and SARCOMA specialists, ContiCaNet, which will try to facilitate joint trials in Europe.


The question and answer part of the meeting ended at this point.



GIST Support UK Business Meeting


Judith proposed that the GIST Support UK group should combine with Sarcoma UK and that a steering group should be set up. She said that this had been discussed with Dave Cook and with Roger Wilson, and also with Fiona Turner from Novartis. There were no objections to this suggestion from those present, and six people offered to join the steering group.


Roger Wilson handed out a questionnaire about patient care which he asked patients to complete anonymously, so that we can get a better picture of what is actually happening to patients around the country.


Grateful thanks were expressed to Ruder Finn for organising the meeting and to Novartis for funding it.


Tea was then served, and the networking continued for some time. The general feeling was: "When shall we meet again?"




Patsy Thompson

Posted: 4/12/2006

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.