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


Held at the Royal Institute of British Architects on 25th October

Report of Meeting by Patsy Thomson


Introduction to the Presentation by Mr Evangelos Efthimiou of a Research Study by Mr Satvinder Mudan and the Sarcoma Team at Royal Marsden Hospital

The purpose of surgery for removal of primary GIST tumours is to clear the tumour with good margins in the hope of eradicating it. For those whose cancer is initially inoperable, Glivec may make surgery possible after shrinkage, and these patients are part of the report as "those with Localised Disease".

The question we as patients have had to ask when offered treatment is, "Why should we consider radical surgery when we are well and stable, and Glivec is working well for us?" The answer is that unfortunately evidence shows that Glivec will probably stop working at some point, usually not with a complete "break out" but with nodules of new growth which are new mutations and which Glivec cannot control. However as we saw at the meeting, there are many people still living for many years with metastatic disease being controlled by Glivec. Six years is the longest so far but it could go on for much longer. The question we then have to ask ourselves is should we opt for surgery or trust that we can get a new drug which will take over from Glivec? The difficulty is that there is this "window of opportunity" while Glivec has done its maximum in terms of shrinkage and it is still working.

The things which have to be taken into account are that there are problems with accessing new drugs such as Sutent [the only other licensed drug so far but which has not been approved by NICE]. Some PCTs are prepared to pay for it but most are not at present. When offered surgery, one needs to access as much information as one can, including studies like the one presented today. Archived Liferaft Group Newsletters are a good source of information-available at www.liferaftgroup.com. We must take into account our own personal position and the current information on new drugs. Knowing one's own mutation might help but seems less relevant than it used to be, as new drugs may be more widely effective than Sutent.

The other problem we have in the UK is that although there are some very exciting new drugs in trials, there is only one trial available here, compared with more options in US and mainland Europe. Some drugs may be available here on compassionate grounds from the drug company. We need also to remember that the treatment of patients with 800mg of Glivec if 400mg is no longer working, is sometimes difficult because NICE has not approved this, though some patients seem to access the extra 400mgs without problems. We would normally expect our consultant to advise us, but there is a lack of scientific evidence that having surgery will offer a longer period to progression and longer-term survival than leaving well alone.


This study by the team at the Royal Marsden Hospital has been done to try to provide this information. It shows the results of surgery on 25 patients who had taken Glivec before surgery. When asked by a patient at the meeting whether the study demonstrates that we would be better off having surgery, Mr Mudan was unable to answer definitively because he pointed out that this is a "study" not a "trial", as there is no control group.


The Power Point presentation of the study is not that easy to follow without the spoken commentary. Some of the abbreviations are undefined, but I think that the general message does emerge, that many of the 25 patients seem to have benefited from their surgery after taking Glivec. The survival curves are rather frightening because they can only give the data "so far". One needs to be aware of this when looking at the study results. There were only 25 patients, and this is a very small number from which to draw conclusions, but the results are both interesting and encouraging.


The question time after the presentation made it clear that it is very important to see a specialist GIST surgeon, because he will need to be able to deal with any organ associated with the GIST, and to be able to make decisions during the surgery. So if in any doubt, do ask for a second opinion.


Please remember that this is just my "take" on this situation and may help those who were not able to come to the meeting to interpret the Study. I have no medical qualifications, just experience and a bit of research.

Patsy Thomson.


Click here to see the slides used during the presentation.

Minutes of the Business Part of The Meeting




Patients and carers were invited to take out membership of GIST Support UK. £10 was suggested as an annual member's donation to The Sarcoma Trust. This could be Gift-aided. Sheelagh was thanked for her great job in organising the meeting. She is paid by the group for the work she does, but it was felt that membership records could be kept by someone else. Kate offered to be Membership Secretary.


Today's Speaker

It was noted that the raw results of the paper was a shock to some with pictures of GISTS removed and survival graphs which seem alarming. However, many of the patients present have already survived for six years and are still going strong!


NICE review

NICE will review its Glivec recommendations soon, and Sarcoma UK are on the panel to offer input. GIST Support UK have been asked to make proposals and Judith asked for help with this. Sheenagh Kynoch, David Cook, Roger Wilson and Kate offered .



GIST Support UK Leaflet

This needs to be updated with new treatments etc. Gail Williamson and Renata Holden offered to help Roger with this.


Booklet for Gist Patients

A credit card sized booklet has been designed by Judith and Peter Greenwood, and was available on the day for £1, to have in the wallet to alert medical emergency services to our condition. Now available from Judith.


Become a separate charity.

The GSUK Group would like to apply for Charitable status in its own right - this needs thinking about in more detail.



At the moment our money comes from Novartis and Pfizer in the form of Unrestricted Educational Grants. We are very grateful for this money, and the freedom both companies allow us. However, in the long term, it would be good to become a Charity and try to get wider funding to maintain our transparent independence from the drug industry.


Travel Costs

There were about 70 at the meeting. Travel costs are high and Judith asked members to keep them to a minimum. It was suggested that not everyone may need to claim them. It was also suggested that Saturday might be a cheaper day to travel. However, professional speakers may not want to come and childcare is difficult. If you have a strong opinion please send a note.



Patsy said that some members may have found today's presentation a bit raw and distressing and may just have wanted to meet together. It may be an option to have local meetings just for support and sharing coping strategies. Finance can be obtained for this kind of thing from Macmillan. Anyone wanting to organise such a meeting could use the Mailtalk group to see if other members would like to attend.


Research Money for GIST.

Cancer Research UK pays for research into sarcomas from its main fund, so by supporting Cancer Research we are supporting sarcoma research. [About £5m goes to Prof Judson's Research group at RMH]




Complementary Therapies


The meeting moved on to a discussion about the use of complementary therapies. Judith told of a recent meeting where a complementary therapist presented a paper which purported to show efficacy of a particular treatment. She felt they had only proved that "patients" felt better after treatment and that this is the reason why our members may benefit from them. We do not expect a cure from therapies such as Reiki, aromatherapy, acupuncture etc, but several members told of the sense of well being and wellness after treatment. It was said that this may help support the body's defences to fight the cancer. The Cancer Backup booklet on Cancer and Complementary Therapies was recommended as a very balanced assessment of all the main therapies available.



Judith said that counselling had helped her. Others found it had not been a good idea as it brought grief to the surface. The importance of finding the right counsellor for you was stressed.


Terry spoke about the fact that the Herbal Industry was unregulated, and that you should use herbal remedies with great care. Judith said that GPs and specialists should be asked before using them. Patsy said that herbal remedies are the basis for modern medicines and trained herbalists were available at shops such as Neal's Yard Remedies, so you could get advice about treating the side effects of cancer and stress-based symptoms like sleep problems, not the cancer itself of course. Green teas, camomile teas and Echinacea are examples of remedies used by many.


(In a follow-up email Dan said, "A few years ago, when I developed some local progression while on Glivec, I had a few phone consultations with Dr Rosy Daniels (one of the original founders of the Bristol Cancer Help Centre) and she prescribed the Indian herbal compound called Carctol which had had a lot of good press. After a while, I started suffering quite severe stomach cramps and was admitted to St Georges hospital. It turned out that one of the ingredients of Carctol is an extract of rhubarb which is known to be a stomach irritant in some people.")


Roger gave an example of a remedy based on red fruits which is under trial as a remedy at the moment. Dan pointed out that herbal remedies are the basis of many modern medicines and in fact it was the action of Shitake Mushrooms which was the basis of the research into Glivec. Strong opinions were expressed on the topic and the discussion continues on the Mailtalk group.


Judith and Roger were thanked for their organisation of the meeting.



Patsy Thomson

Posted: 05/11/20



Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. 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.