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


Those who were at the London meeting on 22nd October were invited to fill out a table of the side effects they were having or had had. The results from patients taking imatinib are quite interesting. The thing that struck me (Judith Robinson) as I was doing the counting was how different we are. Some people have a huge list, and others very few. Both the patients now taking only 300mgs had the most, which of course is why they are taking 300mgs. Some of the effects seem to be much more common than the Patient Information Leaflet would suggest, so I will be passing on this data to Novartis. I know we are not a random sample of patients, but tiredness is supposed to affect about 10% or less: in our group it affected 75%! Puffy eyes again should be 10% and in our group it was almost 50%.


I suspect that many of us do not report things like painful hips, or cold toes or fingers (the expected number being 1% and in our sample it was nearly 50%), because we do not consider it that important, compared with the fact that our tumour is under control. Also, because we were not asked to put our names on the replies, we could be honest!


As far as the results from the patients taking sunitinib are concerned, there were too few to really draw any conclusions, except that again some patients had far more problems than others, for no obvious reason..

  All the time   About once a week   About Once a month   Rarely   Just once  
Abdominal pain   2   4     3   1  
Blistering of the skin   1   2     2   1  
Blurred vision   4       2    
Cellulites         2    
Chest pain         1   1  
Cold toes or fingers   4   3   2      
Constipation     2   1      
Cramp   4   7   3      
Diarrhoea   7   3   2      
Difficulty hearing   1       1    
Difficulty speaking         1   1  
Dizziness   1   1     4    
Dry mouth   3   1   1   1    
Fainting     1     1    
Flatulence   9   2        
Fluid retention   3     1   1   1  
Hair loss   2       1    
Heartburn   6     1   1    
Indigestion   6   1   2      
Insomnia     1     1    
Irregular heart beat     1   1   1    
Loss of appetite     1   1   2    
Mouth ulcers   1   1     3    
Nausea   3   4   2   3    
Night sweats   3   1     2    
Nose bleeds   1       2    
Numbness of hands or feet   2   2   2   2    
Pain in hips   2   3   1      
Pain in muscles or bones   2   1   1      
Pain in the eyes         2    
Painful breathing         1    
Pale skin   2          
Puffy eyes   12   1     1    
Rash     2   1   1   1  
Severe headache     2   1   1    
Sudden fever       2   2    
Swollen ankles     2   1   1   1  
Taste changes     2        
Tiredness   11   2   2      
Unexplained bruising     1   1      
Vomiting     1     2    
Watering eyes   7   2   2   1   1  
Weakness of limbs     1     1   1  
Weight increase   5          
Anything else            
How often do you miss a dose?           1  

Dosage No of patients
800mgs   1  
400mgs   13  
300mgs   4  
unknown  1  
Total   19  

Time on Glivec No of patients
<=1year   5  
2 years   4  
3 years   2  
4 years   4  
6 years   2  
8 years   2  
Adjuvant use   nil  
Total number   19 

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.