UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST)
We are delighted to announce that the National GIST guidelines have been updated by the British Sarcoma Group GIST specialists and are now published.
A copy of the latest guidelines can be viewed here
GSUK Chair Nic Puntis interveiwed by BBC Wiltshire radio in reply to BBC Report about the Cancer Drugs Fund.
It is with great sadness that we have to announce the passing of Michael Sayers.
Michael fought a brave battle with GIST for over 13 years and during that time was a Trustee of GIST Support UK.
We are sure that many GIST patients and carers benefited from Michael's advice and support through his postings on our Listserve and through other International GIST online platforms.
God bless you Michael, you will be sorely missed. x
Thank you Strathbogie Junior Agricultural Club!
On Wednesday 16th November we were presented with a cheque for £750 raised by the Strathbogie Junior Agricultural Club in Aberdeenshire.
Grateful thanks go to Anna Cowie and everyone who has helped to raise this donation. We really appreciate your help and support!
Many thanks to everyone who raises funds to support our work on behalf of GIST patients and to stimulate GIST research.
The Trustees GIST Support UK.
7th SPAEN Annual Conference, September 8-10, 2016 in Warsaw, Poland
Once again, the community of patient advocates for sarcomas, GIST and desmoids came together for the annual Sarcoma PAtients EuroNet Conference.
This year, Poland was the host country, welcoming all participants with great hospitality and warmth to their beautiful capital Warsaw.
The three conference days were full of learning about medical topics ranging from pathology to liquid biopsy in GIST, to reconstruction after bone surgery in bone sarcoma and also about sharing experience.
This year SPAEN became an international association further to recent connections with GIST and Sarcoma advocacy groups in Africa and India.
Our Trustees Michael Sayers, David Falconer and Jayne Bressington were involved in the Learning, teachhing, sharing and a great sense of community that is always present at the SPAEN conference.
Don't miss the deadline! - our first GIST Patient Survey closes on 10th September 2016...
Over the next few months we will be conducting a number of surveys which will help us to understand the current treatment landscape for GIST patients in the UK.
We are trying to gather as much feedback as possible on the current situation for GIST patient and are using an established survey tool to help us to do this.
To be effective we need as many patients as possible to complete our first questionnaire which we will close on Saturday 10th September.
Please help us to do this by clicking on the following link and completing the survey
On Behalf of the GSUK Trustees
Our trustee Jayne Bressington spoke to Cancer World:
"Shaping the future of cancer care" - an article about improving care for patients with rare cancers in Europe.
Last month it was the 7th PAWS-GIST Clinic, at Addenbrookes Hospital in Cambridge.
Please read the Clinic Report here
GIST Support UK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.
On 20th April Nic Puntis (Chair GSUK) & Jayne Bressington (Vice Chair GSUK / Patient Director PAWS-GIST, pictured left) went to Westminster and attended a parliamentary reception organised by Cancer52, a coalition of more than 80 charities representing rare and less common cancers.
The reception was hosted and addressed by Chairman of the All-Party Parliamentary Group on Cancer (APPGC), John Baron MP.
The purpose of the reception was to raise awareness of these cancers and highlight the need for earlier diagnosis. Rare and less common cancers together account for more than half of all UK cancer deaths – more than the ‘big four’ (breast, prostate, lung and bowel cancer together) – and on average have poorer earlier diagnosis rates.
Nic & Jayne were invited because GIST Support UK is one of the member charities of Cancer52 and they are very keen to raise awareness and highlight the needs of GIST patients, to improve treatments and knowledge of this rare cancer that affects c. 700 new patients each year in the UK.
Jane Lyons, CEO of Cancer52, said,
“It was fantastic to see so many people affected by rare and less common cancers at the reception raising awareness of these diseases with their MPs. For many the speed of diagnosis is critical as rare and less common cancers are more likely than the common cancers to be diagnosed late, often in A&E, and this has an impact on one year survival rates."
Nic Puntis , Chair of GIST Support UK said,
“It was a pleasure to join Cancer52 at their reception and discuss such an important issue. We need to improve the early diagnosis and treatment of cancers, particularly rare and less common cancers such as GIST.”
GSUK Research Update
In 2012 GIST Support UK granted £20,000 funding to Professor Ian Judson and his team at the Royal Marsden for a research project.
This project aimed to collect tissue samples stored in hospital pathology departments for GIST patients who had been treated at the Marsden over previous years and then to retrospectively undertake mutational analysis of all the samples.
At the outset it was envisaged that this would provide data about the type of GIST, treatments given and subsequent pathways for c.300 patients. It has taken an enormous effort to track and retrieve the samples and then undertake mutational analysis for what has ended up being 550 patients.
Professor Judson is excited to report that with GIST Support UK’s help, he and his team have now managed, to “accumulate a database of clinical and mutational analysis information on 550 GIST patients”. This material will form the basis for a research project, in collaboration with other groups, looking at the incidence and prevalence of different mutational subtypes and their influence on response to tyrosine kinase inhibitors and the development of resistance.
The results of this research will provide valuable insights which may influence future treatment approaches and is the basis for some very informative further GIST research.
Thank you to all of our supporters for helping to raise the funds that have made this work possible!
Ride London 2016
We still have one place available. Go to our Fundraising page for more details.
Regorafenib remains on the CDF in England for GIST patients
As you may already be aware, great news was released on Friday 4th September that Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients, having stayed above the threshold for inclusion on the CDF, further to the second phase of review.
At the patient organisation briefing in Whitehall this morning, we were advised that the plan is for there to be a new style of Cancer Drug fund that will become operational in April 2016. We understand that the new system will also include reforms to the NICE process to allow greater flexibility for the use of cancer drugs.
A public consultation regarding the new proposed system will be opened sometime this month.
Sincere thanks to everyone who has supported our campaign for the retention of regorafenib for GIST patients.
We will update you when we hear that the public consultation about the new system is open.
PAWS-GIST - Clinic 5
20th July 2015
We are delighted to report that Regorafenib has been recommended for use within NHS Wales for GIST
This means that within three months of Ministerial approval (issued July 2015), regorafenib will be routinely available in the NHS across Wales.
A fantastic outcome for GIST patients in Wales!
23rd June - #100,000voices e-petition delivered to No. 10 Downing Street
Sincere thanks to everyone who has supported us with the call to retain regorafenib on the Cancer Drugs fund for GIST patients.
Yesterday was our appointment with No. 10 Downing Street to deliver our #100,000voices e-petition containing 103,841 signatures supporting retention of regorafenib for GIST patients in England.
We were joined by MP’s representing constituents and supporters, from around the UK at No.10 and afterwards at our meeting in The Palace of Westminster. Many thanks to everyone who has supported us throughout this campaign!
21 MP’s have signed the Early Day Motion raised by James Gray MP calling for regorafenib to remain accessible for GIST patients. Please bring this to the attention of your MP and ask them to sign (link below).
Our voices have been delivered and we hope they will continue to be heard!
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We are delivering our #100,000voices petition to No. 10 Downing Steet - Please come and join us!
We are very excited to announce that we will be delivering our 100,000 voices e-petition to No. 10 Downing Street on Tuesday 23rd June 2015, 3.00 pm.
We are hoping that MP’s who have supported our campaign will be able to join us inside the gates to Downing Street along with journalists.
It will be great if you can also come along to cheer us on!
You may like to make a day of it and visit the Houses of Parliament. You can visit the public galleries of either House of Parliament, or the Westminster Hall Chamber, at any time when they are in session. Entry is free and does not have to be arranged in advance – use the main Cromwell Green visitor entrance to the Palace of Westminster
If your MP was helpful during the campaign please can you send them an invitation to join us by using THIS INVITATION
We are hoping that this event will bring together senior GIST specialists in the NHS and charity sector with MPs to discuss our shared ambitions and for GIST cancer patients to have access to regorafenib via the cancer drug fund and any system that replaces it.
If you and/or your MP are able to attend, please RSVP to firstname.lastname@example.org
Looking forward to a great day!
New NHS England Cancer Drug Fund consultation - Closing date 18th June 2015
Please respond to this public consultation on behalf of GIST Patients
The Cancer Drug Fund rules (otherwise known as the Standard Operating procedure or SOP) are currently under review and some changes are being proposed.
Having reviewed the proposed changes we are concerned that they are ambiguous and that if they are not modified will result in regorafenib failing the criteria to stay on the cancer drug fund when there is another review.
This is a public consultation, so please click on the following link and respond to the consultation questions. GIST patient, Carer, Clinician and supporter views are vital for the right decision to be made.
We have prepared some example responses in this document for you to use.
The following link will take you to the online consultation:
We are very keen to work with NHS England to find a sustainable way for rare cancer patients to access treatments.
Please ask everyone that you know to complete the online consultation questionnaire expressing their views on these changes before 18th June.
This is equally as important as when you signed our e-petition. Not doing this could potentially reverse the hard work done to get Regorafinib back on the CDF!!.
23rd May 2015 - We are absolutely delighted to report that Regorafenib is now officially back on the cancer drugs fund for GIST patients in England.
This is fantastic news and we would like to thank everyone who contributed to this decision:
- our fantastic #100,000voices team including William Bassett and the team at TMW.
- our Clinicians in particular Professor Ian Judson And Dr Ramesh Bulusu
- everyone who supported our #100,000voices campaign
- everyone who helped by contacting MP's and media contacts. and of course
- special thanks to NHS England and the Cancer Drug Fund panel for agreeing to retain Regorafenib for GIST patients.
On behalf of GIST patients in England THANK YOU for making the best decision.
regorafenib (Stivarga®) is accepted for use within NHS Scotland.
regorafenib has been approved in Scotland for treatment of adult patients with unresectable or metastatic gastrointestinal stromal tumors (GIST) who have progressed on or are intolerant to prior treatment with imatinib and sunitinib.
This advice takes account of the benefits of a Patient Access Scheme (PAS) that improves the cost-effectiveness of regorafenib and is contingent upon the continuing availability of the PAS in NHS Scotland or a list price that is equivalent or lower.
This advice takes account of the views from a Patient and Clinician Engagement (PACE) meeting.
The link below takes you to more detail on the Scottish Medicines website:
Richard Bassett and Tori Jane’s labour party candidate Sally Keeble, organised a meeting with Andy Burnham (Shadow Secretary of State for Health) as he visited Northampton.
Richard was otherwise engaged at a consultation with Professor Judson so Jayne Bressington, Vice Chair of GIST Support UK was asked to discuss Richard’s situation and our #100000voices campaign calling for retention of regorafenib on the Cancer Drugs Fund for GIST patients.Andy was very understanding and keen to help. He will be writing to senior members of the NHS to support our campaign.
Also today Vicky Rockingham appeared on a new ITV show called O'Brien and participated in a debate about NHS expenditure. Thankyou for representing our needs to ably Vicky. You did us proud!
Jayne Bressington, vice chair of GIST Support UK (http://www.gistsupportuk.com/), talks to BBC Radio Humberside about the government's plans to stop funding for the rare cancer drug Regorafenib. The petition to stop these cuts has gained 100,000+ signatures and we are now calling on everyone to write to their local parliamentary candidates ahead of this year's election.
GIST Support UK's #100000voices campain hits target - 18th March 2015
Our #100000voices campaign beat the target number yesterday and currently stands at 101,304!
We are still working to re-instate regorafenib to the CDF for GIST patients but this initial milestone has now been achieved.
Thank you for all your support!
GIST Support UK Launches Media Campaign to Reinstate Regorafenib to the Cancer Drugs Fund...
Please sign & share our e-petition
We need 100,000 signatures. #100,000voices
We are trying to get 100,000 signatures on our e-petition to get regorafenib re-instated to the cancer drugs fund. Click here to sign the petition and add your voice.
Please take two quick minutes to add your voice to the petition and become one of the #100000voices?
Doing so will help keep the life-saving drug Regorafenib available and ensure that those with rare cancer get a fair hearing.
Please Print and display our poster...
Dr Ramesh Bulusu - Interview discussing Regorafenib and GIST
In the News....
The Mail on Sunday - Health correspondent Stephen Adams' report about Regorafenib...
Vicky Rockigham and Richard Bassett (above) were interviewed by the daily Mail and their story reported on Sunday 1st March.
Picture Courtesy of Mail on Sunday and Matthew Pover
In the News...
Jemma Mitchell featured in a BBC South News report about regorafenib being cut from the CDF for GIST patients...
Many thanks to Jemma Mitchell for bravely sharing her feelings about what having regorafenib cut from the cancer drugs fund means to her and other GIST patients, during an interview with BBC South.
‘Pictures courtesy of BBC South Today’
UKTV announces GIST Support UK as its Charity of the Year 2015
UKTV staff to cycle from London to Versailles in new charitable challenge
London, Tuesday 27 January 2015 –
Award-winning media company, UKTV, announced today that GIST Support UK has been voted by staff as the company’s Charity of the Year for 2015.
GIST (GastroIntestinal Stromal Tumour) is a rare form of cancer that affects both adults and children, and around 900 new patients are diagnosed every year in the UK. GIST Support UK is a small charity which provides support to patients and their families.
It is run by volunteer trustees and the charity encourages research into GIST cancer and works to improve patient care. More information can be found at www.gistsupportuk.com.
This year, UKTV’s tenacious fundraisers will be raising money for the charity by competing in a new cycle challenge, which will cover 300km from London to Versailles. Bake sales, pub quizzes and more sporting activities are also on the agenda, with every penny raised going to GIST Support UK.
UKTV’s CEO Darren Childs said, “I’m extremely proud of the commitment UKTV staff show each year to supporting the company’s elected charity and last year we doubled our target amount to raise a record £75,000. I’m in no doubt that UKTV’s dedicated fundraisers will once again meet every challenge set during 2015 to raise as much money as possible for GIST Support UK.”
Jayne Bressington, Vice Chair GIST Support UK & Patient Director of the PAWS-GIST Initiative, added, “The Trustees of GIST Support UK are excited and honoured to have been chosen as UKTV’s Charity of the Year. Fundraising is vital to instigate GIST cancer research projects and we hope that with UKTV’s support we can raise both funds and awareness of this rare cancer, throughout the UK. Our search to improve treatments and find a cure for GIST cancer is ongoing. Thank you UKTV for joining and supporting the mission!”
UKTV’s Charity of the Year campaign forms part of the company’s CSR strategy which gives staff the opportunity to nominate charities close to their heart which are then put to a company-wide vote. Last year UKTV smashed through its fundraising target of £30,000 to raise £75,000 for children’s charity COSMIC through various fundraising initiatives, including a triathlon which over half of UKTV’s workforce took part in.
- ENDS -
March 19th 2014
On 13th April Robert Beale is running the 2014 Virgin Money London Marathon in aid of Gist Support UK.
To Donate and wish him all the best visit the following link.
December 19th 2013
Scottish Sarcoma Network
Patients who are interested, are welcome to attend any of the Sarcoma education days, which you can see on the Scottish Sarcoma Network website.
Any patients that are interested in these days, or would be interested in extra support, find out about available services or need help with any concerns are encouraged to get in touch.
Managed Clinical Network National Manager for Sarcoma,
HPB and Neuro Cancersc/o West of Scotland Cancer Network
1st Floor, St. Mungo Building
Glasgow Royal Infirmary
84 Castle Street Glasgow G4 0SF
October 17th 2013
Pub quiz in aid of Gist Support Uk
The Pub Quiz on Oct 17 in Tooting was an absolutely fantastic evening and success. First and foremost, the biggest mention must go to Barbara's sister Jan for putting together the event pretty much single-handedly by all accounts - even persuading her son to fly in from Moscow - that is serious fundraising for you! A HUGE amount of work clearly went into the evening so Jan really does deserve enormous praise.
As well as being huge fun with drink, food, humorous compering and a celebrity attendance by Guy Henry (former Director of Surgery, Henrik Hanssen in Holby City) who announced the winners of the Raffle with an extensive haul of prizes all donated on the night by attendees, the event pulled in over£1,800 for GIST Support UK - not a bad evening's work.
I was also delighted to learn that the word 'Set' has the most dictionary definitions of any word in the Oxford Dictionary and that Donald Duck's middle name is Fauntleroy! Hopefully it can become an annual fixture (no pressure Jan!). GIST Support UK clearly has some major friends and I was delighted to have been part of the evening. Thank you again Jan - and thank you for my fish finger sandwich (she'll know what I mean!).
By Tammy. Whose team were runners up in a very strong competition! (Tammy furthest right in picture)
October 15th 2013
Thanks to a great response from our meeting, listserve, facebook, twitter & on our website the trial below is now closed.
DR Sodergren extends her thanks and will be in contact with us again in the future.
October 14th 2013
EORTC funded Symptom Based Questionnaire project
At our meeting in October 2013, Dr Samantha Sodergren came to request our help to recruit GIST patients to take part in a short study.
- The aim of the project is to develop a questionnaire to measure the side effects experienced as a result of targeted therapies such as imatinib and sunitinib
- They have carried out an extensive literature search but would like to invite individuals who have GIST and who have been treated with biological therapy to a short telephone interview to talk about the side-effects experienced as a result of therapy
- If you are interested in being involved with this research or would like further information, please contact the study co-ordinator:
Dr Samatha Soderfren
Tel: 02380 794308 or
Write to: Cancer Sciences, Southampton General Hospital, Tremona Road, Southampton SO16 6YD
further details on
August 21st 2012
GSUK helps to fund GIST research
On 20th August we were delighted to present our medical consultant, Professor Ian Judson, with a cheque for £20,000 to help support a new research project. Professor Judson plans to collect data on all the patients who are being or have been treated at the Royal Marsden Hospital, in order to study the correlation between the mutation present in the first tumour and the patient's subsequent GIST journey. This will entail doing the mutation analysis on samples from the tumours where this is not yet known, and then collating the information on imatinib response duration and survival. The ultimate goal is to improve care for GIST patients, by learning more about the nature of the disease. What we need to know is the real incidence of primary mutations that respond poorly to imatinib and more about the influence of the mutation on the behaviour of the disease, some mutations may be resistant to treatment but nevertheless associated with a reasonably good outlook. GSUK's donation will get the project started, but if anyone would like to make further donations, they should send their cheques, Gift Aided if possible to: The Treasurer GSUK.
In the picture (L to R): Tracy Hak, Prof Judson, Judith Robinson, Alison Dunlop (Specialist Nurse)
Paediatric, Adolescent, Wild-type & Syndromic GIST update.
PAWS-GIST is raising funds to set up a clinic in the UK for Paediatric, Adolescent, Wild-type & Syndromic GIST patients. Our aim being to improve treatment and ultimately find a cure for this rare form of cancer.
We hope that by the end of 2012 we will be in a position to launch a PAWS-GIST clinic in the UK.
Currently the only clinic of this type is in the USA at the National Institutes of Health in Washington DC. This clinic started 4 years ago and has to date seen 90 patients. PAWS-GIST aim to work collaboratively with the NIH clinic.
The NIH clinic has previously met twice annually. The following information details what happened at the 9th clinic which happened in June and includes the latest information available from this specialist group who focus specifically on Paediatric & Wild-type GIST patients.
April 13th 2012
SMC approves adjuvant use of Imatinib
Imatinib (Glivec) has been accepted for restricted use within Scotland for certain high risk GIST adult patients. The SMC accepted that adjuvant imatinib for three years compared to one year significantly improved survival. However, this treatment has yet to be approved by NICE for England & Wales. Click here for full details from SMC.
March 13th 2012
The PleurX system
This new approach to the treatment of ascites has just been approved by NICE. It comprises a catheter and collection vessel which the patient can continue to wear at home, so that he does not need to make repeated visits to hospital everytime fluid needs to be drained.
Click here to read the full text of the manufacturer's press release.
March 13th 2012
European Commission approves extending adjuvant therapy with Glivec to three years for certain GIST patients
Novartis announced on 27th February that the European Commission (EC) has approved an update to the Glivec® (imatinib)* label to include 36 months of treatment after surgery for adults with KIT (CD117)-positive gastrointestinal stromal tumors (GIST) who met the inclusion criteria of the pivotal study. This extended treatment regimen has been shown to improve recurrence-free survival and overall survival for these patients with KIT+ GIST compared to patients who received 12 months of treatment after surgery.
- Approval based on Phase III study showing significant recurrence-free and overall survival after three years of adjuvant Glivec in adults with KIT+ GIST
- Adults with KIT+ GIST are at risk of recurrence following surgical removal of the primary tumor; extended treatment may delay onset of recurrence
- Glivec is the only available therapy in the EU for the treatment of post-surgical KIT+ GIST
Click here to read the full text of the Novartis press release.
February 9th 2012
On 1ST February AB Science published a press release announcing encouraging results from a phase2 trial of their drug masitinib. The trial compared masitinib vs sunitinib for the second-line treatment of patients with locally advanced or metastatic imatinib-resistant GIST. Members of SPAEN and clinical experts felt at the time that AB Science's claims were premature. However subsequent information about Masitinib is more encouraging, although it may be some time before it is available in the UK. Click here to see the full text of the press release and SPAEN's critique.
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 15th 2011
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.
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. to read Jayne Bressington's report of the meeting. 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.