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



Here is the summary of the guidance issued by the National Institute for Clinical Excellence (NICE) on the use of Glivec (Imatinib is the chemical name for Glivec).

The NICE recommendations are the numbered paragraphs and gistsupportUK comments are given as "Translation and Comment" below

1.1 Imatinib treatment at 400 mg/day is recommended as the first-line management of people with KIT (CD117)-positive unresectable and/or KIT (CD117)-positive metastatic gastro-intestinal stromal tumours (GISTs).


Translation and Comment:
"Unresectable" means inoperable, "metastatic" means spreading to other areas of the body. "First line management" means treatment of choice. Obviously if tumours are operable then the first-line management is surgery to get rid of the tumour.

KIT-positive tumours are the most common type of GIST.

1.2 Continuation with imatinib therapy is recommended only if a response to initial treatment (as defined in Section 1.5) is achieved within 12 weeks.

Translation and Comment:
Treatment with Glivec is to be continued only if the GIST "responds" within 12 weeks of starting the drug. This is the most controversial item in the NICE Guidance and is discussed below after paragraph 1.5

1.3 Responders should be assessed at intervals of approximately 12 weeks thereafter. Continuation of treatment in responders to imatinib therapy is recommended at 400 mg/day until the tumour ceases to respond, as defined in Section 1.5.

Translation and Comment:
"Responders" are GIST patients for whom the drug treatment causes shrinkage or disappearance of the tumours or whose tumours stop growing and become stable. Again the recommendation is that the treatment should stop if the tumours start to grow again.

1.4 An increase in the dose of imatinib is not recommended for people receiving imatinib who develop progressive disease after initially responding (see Section 1.5).

Translation and Comment:
If a patient stops responding to the drug; i.e. the tumour(s) start to grow again, increasing the dose of the drug is not recommended. This is a recommendation which is in dispute and contrary to the experience of some patients and some oncologists. Latest evidence from trials of Glivec shows that, in some patients, growth can be stopped by an increased dose. When all these data are published, this recommendation may well be dropped.

1.5 For the purpose of this guidance, response to imatinib treatment should be assessed on the basis of the results of diagnostic imaging to assess size and density of the tumour(s), patients' symptoms and other factors, in accordance with the Southwest Oncology Group (SWOG) criteria detailed in Appendix D. For the purpose of this guidance, response to therapy is defined as the SWOG classifications of complete response , partial response or stable disease.

Translation and Comment:
"Diagnostic Imaging" means (in the UK) X-ray CT scans. Appendix D to the report just gives a technical description of the criteria used. "Complete response" means complete disappearance of the tumours, "partial response" means shrinkage of the tumours and "stable disease" means that the tumours stop growing.

The way in which the tumours respond to Glivec is the all-important matter here. Many patients' tumours show shrinkage well within the 12-week period, while others may take many months to respond. Equally important, CT scans can only measure the size and (less precisely) the density of the tumours. There is a good deal of evidence that some tumours are "killed" from the inside by Glivec without changing size and may well become operable if treated for long enough. These cases would be missed if the 12-week deadline is imposed strictly. A much better way of judging the response to Glivec is by PET scanning which measures how active the tumours are by measuring the cell processes. This type of scan can often show response to Glivec within days of starting taking the drug. Unfortunately this scanning technique is not yet widely available in the UK. However, it is to be hoped that, in allowing "other factors" in the assessment of a patient a more flexible diagnosis can be given based on an oncologist's experience with each patient.

1.6 The use of imatinib should be supervised by cancer specialists with experience in the management of people with unresectable and/or metastatic GISTs.

Seems an obvious recommendation

Since the NICE Guidance was published, clinical research has moved on in various ways, and we are hoping for a review of this Guidance in 2009.

(Last updated December 2008)

Posted: 02/12/2010

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.