Things to Read...

Publications

We have a number of publications available which you may find helpful. Most are in the form of PDFs which can be downloaded. Alternatively you can email us at admin@gistsupportuk.com and ask for a hard copy. A donation towards the cost of postage would be welcome!

TITLE DESCRIPTION DOWNLOAD
GIST For Beginners (2015)
  This booklet is an introduction to GIST. It explains what GIST is, how it is diagnosed and what the possible treatments are.  This version is the original text. A more elegant printed version is obtainable from GIST Support UK. Download
(741KB)
Eating after GI Surgery for GIST
  This is a booklet prepared by GSUK on coping the with problems of eating after stomach surgery. It is based on the experience of GSUK patients. Download
(893KB)
No Stomach?
  This booklet is intended for patients who have had a total gastrectomy. It may feel rather a daunting and negative assessment of life after removal of the stomach, but we know a number of patients who have learnt to manage this very well, and continue to lead normal lives. It is probably useful to read this in conjunction with the above booklet "Eating after GI Surgery for GIST" since that covers things not mentioned in this booklet. Download
(100KB)
I am a GIST Patient
  This is a useful little pocket book in which you can record details about your GIST and any medication you are on. It is intended for use in the event of a medical emergency. It has spaces for the name of your oncologist, the drugs you are on, etc, and lists the drugs to be avoided if you are on Glivec or Sutent. The booklet is a translation from the German of an equivalent booklet produced by Das Lebenshaus. Available by post only
100 Questions & Answers about Gastrointestinal Stromal Tumor (GIST)
  By DeMatteo, Symcox and Demetri (ISBN-13:978-0-7637-3838-9/ISBN-10:0-7637-3838-7). Although this book has been written very much with an American readership in mind, it nevertheless carries a lot of very helpful information about GIST and its treatment. GSUK does not keep copies but you can order it through any good bookseller. It costs about £10. Available from book sellers
GIST Support UK Publicity Leaflet
  A leaflet telling you about GSUK. For distribution as widely as possible, especially in hospital out-patient departments. Download
(217KB)

 

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>>>.  

Michael Sayers...news

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

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

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.

Masitinib
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.