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

MIKE'S STORY

After discovering a primary GIST, which very nearly killed me back in September 1999, emergency surgery was carried out by Mr Nasmyth at my local hospital in Barrow. This ultimately saved my life. Unfortunately, despite the success of the surgery, the tumours spread to my liver and I was referred to the Christie in Manchester - beginning my extensive tour of the country's top cancer units! I owe my life to many of the wonderful people I met along the way.

Under the care of Professor Radford at the Christie, I started taking Glivec (400mg) in May 2002. However, my cancer progressed and this treatment was stopped in July 2003. After this I was being treated for my liver metastases at the Hammersmith Hospital, I was an in-patient nine times. If ever a surgeon did his utmost to keep a patient alive it was Professor Habib, who carried out the liver surgery, he is one man I'll never forget.

Without the people at the Sarcoma Unit, Royal Marsden, things would be very different for me now. I have Professor Judson to thank for that. I began the Sutent trial at the Marsden in July 2005. I have now been on the drug for just over two years (Aug 2007) and am feeling fine.

At the same time I began my fight to have access to high-dose Glivec (800mg) but was twice rejected by my Primary Care Trust (PCT) - Morecambe Bay - because the current NICE guidance only allows for treatment with 400mg.

Glivec is licensed for use at 400 and 800mg, but at the time that Glivec was appraised by NICE the 800mg dose was not yet licensed and so was not included in the guidance. This means that patients like me, whose doctors have recommended that 800mg Glivec should be made available to them, are denied therapy.

Supported by Health Secretary, Patricia Hewitt and my local MP, John Hutton, I made a third appeal against my PCT. With the political intervention, the weight of clinical evidence about the effectiveness of high-dose Glivec, expert advice and the support of Roger Wilson of the group Sarcoma UK and Dave Cook of GIST Support UK, I was finally successful in getting access to this drug.

The good news is that after a six-month battle I have now finally won the right to 800mg of Glivec, should the Sutent no longer prove to be effective.

Myself, Dave and Roger believe the ruling will pave the way for other GIST sufferers to obtain high-dose Glivec.

We are sorry to say that, after a long battle the GIST finally won, and Mike passed away in October 2012.

Our sympathies go to Mike's family.

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.