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


You have to laugh at some of these things. When I took Glivec on the first day it was an absolute disaster. The nurse that gave the tablets to me was more interested in the tablets as he had never seen them before and he was the one advising me. I popped the first pill and 4 hours later was writhing in agony. Every bone in my body was screaming at me !.We used the callout procedure and explained to the various chaps at the other end what the problem was ,they all however must have a script in front of them because they wanted to know the ins and outs of everything, none of which was relevant ! Eventually we spoke to the on call doctor and explained it was all to do with GIST,at which point he asked what GIST stood for ! I could have cried !

Fortunately whilst waiting for various calls back we had spoken to the locally manned cancer ward of another hospital and the advice was get some morphine ! We relayed this to our unsure doctor on the phone who subsequently agreed and arranged for us to go into casualty to get the fix. I got there on all fours in the back seat of a pick up truck because I couldn't stand or sit and the roads were too flooded for a car it was 11.30 at night. We came away with a big bottle of oral morphine with instructions to take 2.5 mills and if that did not work wait half an hour and take 5 mills. We followed the instructions but it didn't have much effect ! We phoned back those lovely cancer nurses again (they are on the ward 24/7) who clandestly advised that their patients usually swig it from the bottle ! This procedure was followed a little more scientifically and did the trick although I topped up every 2 hours with about 1 hours sleep in-between.

It took about 8 days to get off the morphine and now 2.5 months later I have hardly any noticeable side effects and would consider that from a wreck I am now 90% fit and raring to go. Amazing stuff Glivec ! I think the moral is we know once diagnosed what our problems are better than most ,our cancer is rare and you cannot expect everyone to be an expert. The best help I have had is this forum and long may it be used I think it's great and am really grateful to those particularly who take the time to regularly share their experiences. We are all slightly different but there is no need to reinvent the wheel ! I look back on the bad stuff and laugh at it, it makes A great story!

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.