January 3rd 2012
PAWS GIST Paper appears in SIOPE Newsletter
Jayne Bressington has written a paper on PAWS GIST for the Newsletter of SIOPE (European organisation for the support of paediatric oncology).
Click here to download the newsletter as a PDF. Jayne's article is on pages 16 and 17.
December 19th 2011
Pippa Hatch to carry Olympic Torch
We are delighted to announce that one of our Paediatric Wild-Type GIST patients, 17 year old Pippa Hatch from Reading, has received a conditional offer to be an Olympic Torchbearer for the London 2012 Olympics. Originally nominated by Sarcoma UK in recognition of her fundraising and efforts to raise awareness of sarcoma cancer and GIST, Pippa is delighted and honoured to have been chosen as one of the 8000 Torchbearers who will take part in the relay across the UK next year.
Pippa says: “I am honoured to have been nominated as an Olympic Torchbearer and to have been given the opportunity to represent GIST and other forms of sarcoma whilst running the Torch through Reading next year. It’s lovely to know that I have inspired people, and have helped to raise awareness of these rare cancers. I have met so many inspirational people during my cancer journey and it will be an honour to represent us all. I am so grateful to Sarcoma UK for nominating me and can’t wait for July.”
She will be running the torch on the 10 July, between Oxford and Reading.
December 15th 2011
SPAEN MEETING
Three members of GIST Support UK attended this meeting of the Sarcoma PAtients EuroNet in Berlin in November. Click here to read Jayne Bressington's report of the meeting.
December 12th 2011
PATIENT INFORMATION MEETINGS
We had a very successful patient meeting in London on Thursday 20th October in London. A video report of this meeting will appear on this site in due course. Our next meeting will be in April 2012. This will be announced on this site when further information is available.
June 22nd 2011
Regorafenib to be fast-tracked by US authorities
The assessment of Bayer HealthCare's investigational drug regorafenib for the treatment of stomach tumoursis to be fast-tracked by US authorities for the treatment of stomach tumours Click here to read the report.
June 22nd 2011
Results of 36 month adjuvant trial of imatinib for high-risk GISTs
ASCO 2011 News reports that 36 months adjuvant Imatinib treatment for high risk GISTs improves recurrence-free survival (RFS) and even overall survival (OS). Click here to read the report.
June 22nd 2011
NEXT PATIENT INFORMATION MEETING
Our next meeting is planned for Thursday 20th October in London. Invitations will be sent out later in the year, so watch this space for further details! We had a very successful meeting in Manchester on 12th April, attended by about 90 patients and carers. A report will appear on this website shortly.
August 30th 2010
GSUK and SARCOMA UK
GIST is a sarcoma, and until recently when GSUK became a separate charity, it was a sub-group of Sarcoma UK. Sarcoma Uk produce a very attractive quarterly newsletter which GIST patients may find interesting. If you would like to be added to the mailing list for this newsletter, please contact Sarcoma UK directly on www.sarcoma-uk.org/contact2.htm
December 13th 2009
SUTENT APPROVED IN SCOTLAND
The Scottish Medicines Consortium has now approved the use of Sutent for the treatment of unresectable metastatic GIST, after failure of Glivec, or intolerance to it. Click here to read the press release.
August 25th 2009
NEW DRUG TRIAL
If your GIST is too big to remove or if it has already spread to more than one site, you maybe interested in the new clinical trial being organised by Novartis. It will be recruiting patients in many countries.
This trial is designed to see whether nilotinib works as well or better than imatinib, the normal treatment for GISTs which are too big to remove at first or for those which have already spread. There is some evidence that nilotinib has fewer side-effects than imatinib.
This study cannot be “blind” because the two drugs have to be taken in different ways, so you will know which one you are taking, but which one you get will be decided at random by a computer. If the one you get does not work for you, or you get too many side effects, you can then take the other one.
You will be monitored very carefully during the trial, and Novartis will cover your travel costs for clinic appointments.
The trial will be available at:
The Royal Marsden Hospital, London starting in July 2009
The Christie Hospital, in Manchester starting in July 2009
The Newcastle Royal Infirmary due to start in September 2009
University College London Hospital starting in July 2009
Birmingham Heartlands Hospital starting in July 2009
Addenbrookes Hospital, Cambridge due to start in September 2009
Western Infirmary Hospital, Glasgow due to start in September 2009
Do ask your oncologist for more information if you are interested.
August 25th 2009
100Km sponsored swim
15 year old Isla Evans from Swansea has just completed a 100km sponsored swim for GIST Support UK. The swim took her 7 days, with two two-hour sessions each day at the Swansea International Pool. In the photograph we see her with Judith who went to Swansea to support her. 
May 31st 2009
NICE APPROVES SUTENT
We are delighted to report that NICE has agreed that Sunitinib (Sutent) is to be made available for GIST patients who are resistant to imatinib or for whom imatinib is inappropriate. There are some restrictions and an appeal against them is likely. For details have a look at www.nice.org.uk/guidance/index.jsp?action=folder&o=44362.
May 7th 2009
MANCHESTER MEETING
We had a very successful meeting yesterday attended by about 70 patients and carers. We heard presentations from Roger Wilson, from Dr Michael Leahy and from Dr Dominic Bray, and the day gave everyone a valuable opportunity to meet together, to share experiences and to give each other support. A report of the meeting is available under the link "Manchester Meeting May 2009".
April 21st 2009
WE NOW HAVE OUR CHARITY REGISTRATION!
We have now successfully registered GIST Support UK as a charity with registered number 1129219. We shall shortly be revising our various documents, headed paper, and this website, to reflect our newly-acquired charity status.
December 2008
Cancer Patients to be exempt from Prescription Charges
The Government has recently announced that with effect from 1st April 2009 cancer patients will be exempt from prescription charges. Please click here to see a copy of the NHS letter to health professionals which explains how this is to be administered.
Go to www.nhsbsa.nhs.uk/healthcosts for further information about assistance with prescription charges and the various exemptions that are available.
NICE meeting to re-assess Sutent
There is going to be a NICE meeting on 11th February which is called,
“A technology appraisal of Sunitinib for the treatment of Gastro-intestinal Stromal Tumours.”
GSUK will be represented at this meeting and we are very much hoping that the appraisal will be successful. We all know that it needs to be!
August 2007
"DEFENDING THE NHS"
Professor William Hampton has written an article on the importance of preserving the independence and quality of our NHS. This was published recently in the Sheffield Star, but it deserves wider circulation. Click here for the full text of Bill Hampton's article.
