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

Meeting Reports

GSUK Patient Meetings

Southampton Meeting October 2015
Speakers:

Nic Puntis (chair) - Welcome
Dr Peter Simmonds (Southampton University Hospital)- Learning the language of GIST - MDT, CT, MRI, DGH . . 
Dr Robin Jones (The Royal Marsden) New Research into GIST                               
Dr Claire Foster (University of Southampton) Living and caring in this GIST world
Nic Puntis and Trustees GSUK - its progress and future plans

 Watch videos
Manchester Meeting April 2015
Speakers:

Nic Puntis (chair) - Welcome
Sarah Welby (The Christie)- What is a CNS?
Jayne Bressington (GIST Support UK) - Nutrition with a damaged gut                                           
Dr Mike Leahy (The Christie) - Getting best care?
Jayne Bressington (GIST Support UK) - Progress and Future Plans

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Birmingham Meeting October 2014
Speakers: Barbara Doré (chair) - Welcome
Dr Ramesh Bulusu (Addenbrokes Hospital)- GIST and PAWS GIST Current Position and Outlook
Dr Phillipe Taniere (QEH Birminham) - The Role of Mutation Analysis in the management of GIST
GSUK Trustees - Status Update
Jayne Bressington - Update on the National GIST Tissue Bank
Dr David Peake (QEH Birmingham) - Adjuvant Therapy, who it's for and the benefits.
Barbara Doré - Update and closing session
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Leeds Meeting April 2014
Speakers: Barbara Doré (chair) - Welcome
Professor Penella Woll, Dr Maria Marples - GIST Past Present and Future
Jayne Bressington (Trustee & PAWS-GIST Project Director) - Update on PAWS GIST and the PAWS Clinic
Professor Andrew Hall - The National GIST Tumour Bank
Judith Robinson - The Psychological impact of dealing with GIST
Maxine Eades and Gill Quarrell - The role of the CNS in the management of GIST.
Barbara Doré - Update and closing session.
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Bristol Meeting April 2013
Speakers: Judith Robinson - Introduction from New Chair, Barbara Doré
Dr Newton Wong - Mutational analysis of GIST
Jayne Bressington Update on PAWS GIST Trustee & PAWS-GIST Project Director
Dr Carys Morgan - What is a MDT & how does it work?
Closing talk from Judith Robinson - A big thank you to those retiring.
Steve Falk - An update on drugs & treatment in the pipeline
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Oxford Meeting October 2012
Speakers: Prof Bass Hassan - Research-driven Clinical Decision Making
Jayne Bressington - Update on PAWS-GIST
Pippa Large - The role of the Clinical Nurse Specialist
Dr Claire Marriot - The Maggie's Centres
Judith Robinson - GSUK Update and closing session
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Newcastle Meeting April 2012
Speakers: Prof Andy Hall - Tumour Banking and how patients can help
Jayne Bressington - Update on PAWS-GIST
Dr Peter Stephens - Therapeutic Management following resection of high-risk GIST
Dr Mark Verril - Patient Choice in relation to Adjuvant Therapy
Judith Robinson - GSUK Update and closing session
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London Meeting October 2011
Speakers: Prof Ian Judson - New aproaches to the teatment of GIST
Jayne Bressington - Update on PAWS-GIST
Mr Long R Jiao - Advances in surgical procedures for GIST
Judith Robinson - Open discussion on future plans for GSUK
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London Meeting October 2010
Speakers: Dr Michelle Scurr - Getting best supportive care
Judith Robinson - workshop on the role of the Clinical Nurse Specialist
Read report
Birmingham Meeting April 2010
Speakers: Nick Duncan (principal pharmacist QE Hospital Birmingham) - managing side effects of drug treatment for GIST
Dr Geh and Dr Taniere - mutations in GIST and their implications
Jane Ballantyne (CAB) - state benefits for cancer patieuse of imaging for evaluation and diagnosisnts
Read report
London Meeting October 2009
Speakers: Dr Beatrice Seddon - Developments in treatment (report awaited)
Dr Simon Wood - Data collection project
Dr Zahir Amin (consultant radiologist) - use of imaging for evaluation and diagnosis
"Straw poll" on Side-effects of Imatinib
Read report
Manchester Meeting May 2009
Speakers: Roger Wilson - NICE decisions and the care of GIST
Dr Mike Leahy - current research into GIST
Dr Dominic Bray (clinical psychologst) - living with uncertainty
Read report
London Meeting September 2008
Speakers: Sarah Newton (dietician) - eating problems
Prof Ian Judson - q&a session on adjuvant and neo-adjuvant therapy
Read report
Sheffield Meeting May 2008
Speakers: Dr David Hughes (pathologist) - the role of pathology in diagnosis of GIST
Prof Penella Woll - q&a session on current trials for adjuvant and neo-adjuvant use of Glivec
Read report
London Meeting October 2007
Speakers: Evangelos Efthimiou and Satvinder Mudan - research on the use of Glivec prior to surgery for GIST.
Discussion on complementary therapies.
Read report
Manchester Meeting May 2007
Speakers: Roger Wilson - the formation of the Sarcoma trust
Dr Mike Leahy - q&a session on treatment
Dr Bill Newman - q&a session on mutational testing.
Read report
London Meeting Oct 2006
Speakers: Dr Beatrice Seddon and Cerys Propert-Lewis (Clinical Nurse Specialist). A question and answer session covering current postion on mutational testing, coping with side-effects of Glivec, and similar issues.
Read report

International Meetings

9th Pediatric & Wild-type clinic, NIH, Washington DC
(reported by Becky Bensenhaver)
Read report
SPAEN Meeting Berlin 2011
(reported by Jayne Bressington)
Speakers: Dr Ramesh Bulusu - an update on the treatment of PAWS GIST
Dr Peter Reichart - an insight into new treatment options
Dr Dirk Strauss - the need for specialist sugical expertise when dealing with sarcomas
Read report
New Horizons 2010 in Vienna Read report
Paediatric GIST Clinic June 2008 Read report
New Horizons 2008 in Bavenno Read report
New Horizons 2007 in Bad Nauheim Read report

 

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.