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

Patient Iinformation Meeting

GIST Support UK Meeting, 26th April 2010 At The Holiday Inn, Birmingham

Over 80 patients carers and interested professionals attended this event. There were three presentations: by Nick Duncan, principal pharmacist at Queen Elizabeth Hospital Birmingham, by Dr Ian Geh and Dr Phillipe Tanier, and by Jane Ballantyne of Macmillan. There was also a report by Judith Robinson, Chair of GIST Support UK.


Session Reports

Go to:


Drug treatment of GIST (Nick Duncan)
Mutations in GIST and their implications (Drs Geh and Taniere)
State benefits for cancer patients (Jane Ballantyne)
Chairman's Report


Drug Treatment of GIST

Managing the side-effects

Talk by Nick Duncan principal pharmacist -haematology/oncology Queen Elizabeth Hospital Birmingham


Mr Duncan began by saying that unlike many pharmacists he made a point of actually talking to patients.


For GIST patients there were three key drugs involved


  • Imatinib (Glivec)
  • Sunitinib (Sutent)
  • Nilotinib


In the context of these drugs we would be focussing on:

  • common side-effects
  • interactions with other drugs and foodstuffs


We would not be looking at the drug management of GIST itself


Mr Duncan went on to classify side effects in terms of their frequency of occurrence:

Frequency Proportion of patients experiencing
Very common   More than 10%  
Common   Between 1% and 10%  
Uncommon   Between 0.1% and 1%  
Rare   Fewer than 0.1%  


Very common side-effects include:

  • mild nausea/vomiting
  • diarrhoea
  • abdominal pain
  • fatigue
  • myalgia/muscle cramps
  • rash
  • fluid retention
  • headache

Many of these side effects can be alleviated with other drugs, but we always need to be aware that these drugs can also have side effects. Don't blame it all on the Imatinib!


Dealing with side-effects of Imatinib





  • Nausea and vomiting
    the first approach is always to take the drug with food and with plenty of water. You could also split the dose and take it twice a day. There are also various anti-emetics such as domperidone and metoclopramide.



  • Diarrhoea
    there are a number of over-the counter treatments such as loperamide (Imodium)



  • Muscle cramps
    can be treated with quinine, or the patient may need a calcium supplement



  • Rash This may be treated either with antihistamine cream (if itchy), or a steroid, or simply with an emollient such as E45



  • Fluid retention
    This is often indicated by puffy eyes. It may settle on its own after a while, but diuretics can be considered. If there is excessive weight gain your doctor should be consulted. Excessive water retention and consequent weight gain (Ascites) can occur and needs to be treated.



  • Headache
    This can be treated with the occasional paracetamol, but care needs to be taken because of the risk of liver toxicity. Iboprufen is preferable.


Other side-effects



  • Bone marrow suppression
    This is more common with CML than GIST, but watch out for signs of infection such as fever, sore throat etc.



Drug and food interactions

Imatinib is broken down by enzymes in the liver, and this process can be affected by other drugs, which may speed up or slow down the process. Mr Duncan mentioned the following drugs particularly: phenotyn, rifampicin, St john's Wort, clarithromycin, itraconazole. Imatinib can also interfere with the breakdown of certain drugs, eg paracetamol, warfarin and statins.

There is no problem with most foodstuffs, including moderate amount of alcohol, but grapefruit juice should be avoided because it affects breakdown of imatinib in the liver and can enhance some side-effects.



Side effects of sunitinib tend to be worse than those of imatinib.



  • Systemic
    Fatigue (65%) and mucositis (20%)



  • Gastro-intestinal problems
    Nausea, vomiting, gastric pain (35%), diarrhoea (40%)



  • Skin problems
    "Hand and Foot" syndrome (25%), rash, hair discolouration (33%)



  • Cardiovascular
    Hypertension (23%)



  • Haematological
    Neutropenia, thrombocytopenia, anaemia (20%)


For all these effects it may be necessary to reduce the dose of sunitinib. It can also happen that side-effects get worse with time as shown in the following graph:

Dealing with the side-effects of sunitinib



  • Fatigue and lethargy
    Take more rest! It's rarely necessary to adjust the dosage. However this could also be a symptom of thyroid dysfunction, and can often be overlooked



  • Oral mucositis
    Taste abnormalities and dry mouth are a common effect, and may interfere with eating. The symptoms tend to resolve but can vary in intensity around the treatment cycle. A variety of oral treatments ("Gelclair"), mouthwashes and creams are available. Avoid smoking and spicy foods.



  • Oesophagitis-gastritis
    Symptoms can develop after several months. Treatment with omeprazole or lansoprazole may be needed.



  • Skin problems
    Hand and Foot syndrome can cause numbness, peeling, redness blisters etc. and can be treated with urea/salicylate creams. Mr Duncan recommended "UdderlySmooth" - a cream originally marketed in the USA for cattle but obtainable in the UK from www.notjustforcows.com



  • Hypertension
    This can occur early in treatment, especially when the patient has a pre-existing condition. There should be regular blood pressure monitoring with intervention when the BP exceeds 150/95.



  • Haematological
    Myelosuppression tends to affect neutrophil and platelet counts. There can also be anaemia.



Drug and Food Interactions

These are largely the same as for imatinib.



In many respects the side effects are similar to those for imatinib. However it constipation appears to be as common a side effect as diarrhoea. Its interactions with other drugs are also similar to those for imatinib and sunitinib.

Taking nilotinib with food increases its rate of absorption and the consequent side effects. It is therefore better take it one hour before meals or two hours after.



Although these drugs have fewer serious side-effects than the drugs used for chemotherapy, the side-effects should not be underestimated. They can usually be managed, although in some cases help from the hospital may be necessary.



Terry: What is the relationship between the pharmacist and the drug companies? The hospital had tried to give him paracetamol for pain relief while he was on imatinib. Subsequently he had noticed that paracetamol has been moved down the list of contra-indicated drugs as shown on the Patient Information Sheet.


Mr Duncan The drug companies do revise their Patient Information Sheets from time to time as part of their Post Marketing Surveillance. Information on side-effects, particularly rare ones, needs to be continually updated in the light of growing patient experience.


Judith: The point about the side-effects of the drugs prescribed to counter the side-effects of imatinib is well made. She gave up taking lansoprozole because it gave her muscle cramps - something that in the first instance she had blamed on the imatinib!

Reported by David Robinson

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Mutations in GIST and their Implications for Treatment

Talk by Dr Ian Geh, Consultant Clinical Oncologist, Queen Elizabeth Hospital Birmingham and Dr Philippe Taniere, Consultant Histopathologist, Elizabeth Hospital Birmingham






  1. Dr Geh said that GIST patients were welcome to email him and Dr Taniere only for general advice. By reason of confidentiality issues, they could not deal with any other questions.



    How we develop new cancer treatments



  2. Cancer treatments are developed, to a certain extent, by trial and error. Different substances, different dosages are tried alongside each other and, eventually, useful treatments are found.




  3. The ideal was to have tailored solutions. The year 2000 ushered in a new era, one of targeted, intelligent treatments. Rituximab was discovered in 2000 and imatinib approved for gist in 2004. In 2009 there was a proliferation of new targeted drugs and it was reasonable to anticipate that the number of treatments would extend exponentially from now on.






  4. In the UK we think that there were 600 - 900 new cases diagnosed each year. GIST can occur in people of any age but, mainly, it is found in people aged between 50 and 70. About half of all GISTsstart in the stomach and a third in the bowel.




  5. All GISTs have "malignant potential". The degree of risk depended primarily on the size and the mitotic rate.





  6. The main factors that enabled doctors to determine whether a tumour was a gist or not were the size, pattern of growth, spread and histology.




  7. Histology refers to:



    • the appearance of the cancer cells under the microscope;
    • the immunohistochemistry; and
    • mutational analysis.




  8. For many years, gists were misdiagnosed as leiomyoma, because they look very similar under the microscope.





  9. Gists are positive for:



    • CD 117 (KIT receptor) in 95% of cases;
    • CD 34 in 60-70% of cases
    • DOG 1* in 98% of cases;
    • Smooth Muscle Actin (SMA) in 30-40% of cases
    • S-100 in 5% of cases
    • Desmin in 1% of cases



    * = "Discovered On Gists"


    Mutational analysis



  10. The body has inbuilt signalling between all the cells in the body. These help to "shape" our bodies, to make us look "normal". Cells "talk to one another" via cell signalling pathways and "receptors". Receptors can be switched on or off. This is encoded by the cell's DNA - so a defect in a cell's DNA can lead to the "switch" being on or off inappropriately.




  11. The receptor most commonly malfunctioning in gist is the KIT receptor. This mutation is found in 93% of gists.




  12. The key to successful treatment with imatinib (Glivec) is to "switch off" the molecule inside the receptor. Dr Geh likened the discovery of imatinib to that of penicillin.



    Why carry out mutational analysis?



  13. Mutational analysis serves the following purposes:



    • To confirm diagnosis;
    • To give prognosis;
    • To provide the predictive marker ie to indicate the best treatment.


    Confirming diagnosis



  14. 90 - 95% of GISTsare CD 117 +ve.
    5 - 10% of GISTs are CD 117 -ve.



    Prognosis marker



  15. Gastric GISTs are mostly Exon 11 mutation.


    Small bowel GISTs are mostly Exon 11 but a significant proportion are Exon



    Predictive marker



  17. Trials of imatinib were carried out on unresectable or metastatic gists. These showed that patients on 80 mg of imatinib per day did slightly better than those on 400 mg. However, in the case of patients with Exon 11 mutation, the dosage made little difference. So, the conclusion is that patients with Exon 9 gists will do better on 800 mg rather than 400 mg of imatinib per day.



    Sutent (sunitinib)



  18. Sutent works by blocking the KIT receptor and other receptors. The initial trials were 4 weeks on full dosage and 2 weeks off. The patients taking part in the trial were divided into two groups. There was a ratio of 2:1 of patients who were given Sutent and those on a placebo.




  19. Mutational analysis showed that the outcomes were better for Exon 9 patients taking Sutent than for Exon 11 patients taking Sutent.



    Mutational analysis - how it is done



  20. This part of the presentation was led by Dr Taniere.



  21. Dr Taniere said that mutational analysis was not difficult or expensive. Testing GISTsfor C-KIT and PDGFRA is routine in the UK and is carried out at 6 specialist centres: in Birmingham, Cardiff, Bristol, London (2 centres) and Dundee. These tests are quick and cheap, with results given in about 10 working days. The tests usually are carried out on a biopsy or resected sample. However, they can be carried out on any genetic material from the patient. Much of the process is automated, although interpretation is not. The process involved several stages.



  22. First a resected tumour (as fresh as possible) is examined under a microscope, looking at its histological features - morphology, site, appearance.




  23. Then supplementary tests are used. Gists have well defined immunophenotypes. Most GISTs carry mutations in either the C-KIT or the PDGFRA gene. The presence of a mutation supports diagnosis of GIST and helps in its management, particularly in the diagnosis of CD 117 -ve gist. The prognosis for Exon 11 mutations are better than for Exon 9. The tests help determine the starting dose of imatinib.



    University Hospital, Birmingham's experience



  24. The hospital runs tests on every gist which it diagnoses. Of 270 gists tested between October 2007 and early April 2010, there were 228 mutations in 226 patients ie in 83% of cases. There were 44 cases (17%) of "wildtype" gist.



    Ongoing trials



  25. Dr Geh said that there were ongoing trials on nilotinib, sorafinib and some other drugs. Novartis are looking at nilotinib, with a view to comparing it with imatinib, with which it has some similarities. To qualify for the trial, patients need to have unresectable or metastatic gist. This is an international trial and it is under way in Birmingham and 6 other UK centres: Cambridge, Manchester, Newcastle, Glasgow, University College, London and the Royal Marsden.



Reported by Michael Sayers

Gist Support UK

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Benefits for Cancer Patients

Talk by Jane Ballantyne, Macmillan Benefits Advisor

Jane's talk was supported by a considerable number of PowerPoint slides. Click here to see them.

About 4-5 years ago, according to our speaker Jane Ballantyne, Macmillan started branching out to giving help and advice to Cancer Patients, Carers and Families about state benefits. At the moment there may not be too many advisers at our local CAB offices familiar with cancer patients' needs, so I will attempt to pass on what I can of the information.


Although it may be fair to say that the majority of our patients and carers are over 55, Jane estimated that those under 55 who suffer with cancer in general have a drop in their income of 50%.


Jayne took us through the very complicated process of deciding what can be claimed. She said that 54% of cancer patients are not getting the benefits to which they are entitled. I would guess that in our case with GIST it is a changing situation and we may be fine one moment and then very quickly be in a state of not being sure what will come next.


Those with a Terminal diagnosis should be fast-tracked and given the maximum benefit of £96. The definition of terminal illness is that the illness is progressive and likely to cause death in less than 6 months. Before Glivec this is the sort of prognosis we may have got but thank goodness we now have Glivec, Sutent and surgery as well as new drugs to come so perhaps not many of us will be claiming this benefit I hope. However, and forgive the bluntness, but -- if there are no more drugs available and your cancer is inoperable then you should ask your GP to support you in getting fast tracked for benefit on the basis of being terminally ill. This should pay out straight away.


It is perhaps the side effects of the drugs which may prevent us from working or require us to need extra care for normal living activities. This Jane said will need to have been happening for at least 6 months and will be expected to continue for another 6 months before we can claim the non means-tested benefits of Attendance Allowance and Disability Living Allowance. These depend on age and needs and are not taxable.


For those of us in work at the time of diagnosis the working benefits may apply.

On the radio I heard a lung-cancer patient speak of how he could hardly walk but was being forced to attend work readiness sessions and was being told he would lose his benefit if he did not. I feel that our "good day/bad day" effects of GIST would make claiming difficult. It is hard enough getting a GP to understand us and our medical needs! The often short term needs we have do not seem to fit well with the benefit system with a 13 week assessment time for work related benefits for instance.


For those of us on medication, I suspect that our condition could be classed as chronic rather than terminal but if you are over 65 Attendance Allowance may be a possibility if the needs are long term. For those of us under that age, if either the cancer or the drug side affects are making us unable to live a normal unassisted life, than Disability Living Allowance may apply. This Allowance would mean being assessed by a Medical practitioner [not your own GP].


To conclude, I would say that if your medication fails or you suffer from side-effects which prevent you from working and you are under pension age, then get advice and apply as soon as possible. The complexities of the benefits system means you will really need CAB advice or good research. The whole system is complicated in that one benefit may lead to another, Housing benefit for instance, and one benefit may lose you another.


There is a link to the overheads used by Jane at the top of this report. These will offer more detail, but on the whole advice should be sought.


I would hope that one of the reasons that we should prevail on the Government to support the new cancer drugs is that when they work to prolong the patient's life, in many cases the drug can put the patient back into "working condition" and the patient is then able not only to support him or herself and maybe a family, but to contribute again to the public purse through taxes paid.

Reported by Patsy Thomson

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Business Meeting

- Report by GIST Support UK Chair Judith Robinson

I am pleased to be able to report that our finances are in very good shape, largely due to the generosity of Novartis and Pfizer, but we are getting more personal donations and legacies.


Our current trustees are: Irene Cook, (Treasurer), Sheena Kynoch (Minute Secretary), Terry Dickenson, Patsy Thomson, Michael Sayers, Linda Butcher, and Judith Robinson (Chair).


We are continuing to try to achieve our aims of supporting patients, with the web site, which gets about 700 visitors a month, the telephone line, the Mailtalk group, and by distributing leaflets, books and the pocket booklets. The two meetings each year are getting bigger: the latest in Birmingham in April had 88 attending. These meeting help to raise our profile in the medical world since the speakers discover how informed and supportive we are. We know we are not yet reaching all those who need us, but the posters and leaflets are now being more widely used.


We have asked Terry to liase with Roger to provide information about the GIST community for the Sarcoma Newsletter.


We also continue to represent the patient voice with NICE, the pharmaceutical industry and clinicians. We also make new clinical trials known to patients, so that they can ask their clinician about them. There are currently only two trials open:

Surgery or no surgery for mets. stable on imatinib

Imatinib or nilotinib for patients with inoperable metastatic GIST

Another is due to open later this year:

Nilotinib for patients progressing after imatinib and sunitinib


A new project is exploring how we can best support paediatric-type GIST patients. A group of very enthusiastic patients and parents is taking the initiative here. They are preparing to write to clinicians known to be interested, with a view to setting up a UK specialist group, who will liase both with paediatric cancer centres in the UK and with the existing group in the US. It is hoped that this group of clinicians will then be able to pool their expertise in a more formal way than happens currently. We will find out what, if anything, is happening in the rest of Europe. There is also a thought that this group of patients might well link up with the other young sarcoma patients for social activities.


We have realised that we need to be more proactive in the fund-raising field, and this is currently being explored.


We continue to ask for those interested in supporting us actively by being Trustees, fund raisers, telephone answerers etc. We are now considering the possibility of some paid secretarial support.


At the last Trustees' meeting, I said that I would only continue as Chair for one more year, and Terry has taken on the position of Vice-Chair. I feel now that GSUK is in a very healthy state, and with greater involvement of younger members, the future looks bright.


Judith Robinson

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.