GCUK Patient Meetings - 2008 London Reports

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

GIST Cancer UK Meeting , 29th September 2008 At Royal Institute of British Architects, London

We had a very successful and interesting meeting on 29th September with about 90 attendees. Our guest speaker in the morning was Professor Ian Judson from the Marsden and in the afternoon we heard from Sarah Newton, senior dietician also from the Marsden. The two professional talks were followed by a brief business meeting. Reports of the two talks and of the business meeting follow below.

Speakers & Session Reports

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Talk by Sarah Newton

(Senior Dietician, The Royal Marsden Hospital)


Sarah's talk addressed diet and why nutrition was important. In order to appreciate her talk we would need a basic understanding of the digestive system. She would also cover diet & cancer, where people get their information, and post operative complications.

What we need in our Diet

As different foods give different things it is important to vary the diet and to get the balance right.

We need:

  • Carbohydrate and fats for energy
  • Fluid for hydration
  • Fibre for bowel function
  • Protein for growth and repair of cells
  • We also need vitamins and minerals that the body needs, but that we can't make ourselves.

The Digestive System:

Mechanical breakdown begins in the mouth by chewing. Further breakdown of starch by enzymes in the saliva occurs. This mixture of food and saliva in the mouth called a bolus is then pushed into the pharynx and oesophagus by swallowing. The oesophagus is a muscular tube of about 20cm long whose muscular contractions (peristalsis) propel food to the stomach. The bolus passes through the oesophageal sphincter, into the stomach.

During a meal, the stomach fills to a capacity of 1-1.5 litres. Very little absorption of food occurs here. The principle function is to act as a reservoir although gastric juices are secreted and mechanical churning takes place. This mixture of acidic gastric juice and food leaves the stomach . Contractions of the stomach push the food through the pyloric sphincter and into the small intestine as the stomach empties over a 1 to 2 hour period. High fat diets significantly increase this time period.

The small intestine is where most of the digestion and absorption of nutrients occurs. The pancreas secretes digestive enzymes and stomach-acid neutralizing bicarbonate. The liver produces bile, which is stored in the gall bladder before entering the bile duct and passing into the duodenum. Bile emulsifies fats, facilitating their absorption. Fats are completely digested in the small intestine.

The gall bladder stores excess bile for release at a later time. We can live without our gall bladders, the drawback, however, is a need to be aware of the amount of fats in the food we eat since the stored bile of the gall bladder is no longer available.

From the small intestine the material moves on to the large bowel where waste products like insoluble fibre produce our stools.

Where do most people get their information?

Maybe people get it from the media. - Not everything you read in the papers is true. We were shown two quotes, one from the Telegraph and one from the Times. One implied that it was as good to drink coffee as it was to eat fruit and veg., while the other stated that girls who eat chips are more likely to get breast cancer. Both of these claims came from flawed interpretation of bad studies. To get good data on nutrition one should consult good sources, like a hospital dietician.

How diet can influence cancer

There is a theory that certain nutrients can help cells to repair their own DNA.

Direct effects of diet on cancer risk:

  • Mouldy foods lead to liver cancers, particularly in the third world.
  • If you are overweight you are at higher risk.
  • Other factors are, family history, smoking and exposure to sunlight.

Active Treatment Phase - Surgery

After surgery it is important to ensure that adequate vitamins and minerals are absorbed and to maintain a good body weight to be able to tolerate treatment better. Sometimes after surgery, a person has no appetite, and trying a change in the diet may help here. If one's appetite is satisfied but there is still weight loss, one should try to eat high fat, high calorie foods. One could try changing the timing and frequency of eating, having little and often. Small amounts, eaten frequently are more likely to get enough calories in. A change in texture may also help, lso try adding sauces and gravies To avoid nausea, bland dry foods like toast, biscuits, and crackers are best. Some people have found herbal teas and ginger biscuits help to overcome feelings of nausea.

If you happen to experience changes to your taste:

  • With no taste at all, lemon juice can give a taste sensation
  • If everything tastes salty, avoid salty foods like cheese, salted nuts, crisps etc
  • If you have a metallic after-taste, red meats can make this worse due to a substance called purine contained in the meat. Metal cutlery can make the taste worse, so try using plastic cutlery

If you are still not getting enough calories to gain weight, nutritional drinks like Complan may help.

It may be necessary to rest the gut by having TPN. the practice of feeding a person intravenously, bypassing the usual process of eating and digestion.

Recovery Phase: getting better day by day, but still struggling with weight loss.

Here the emphasis is on high calorie foods, full cream milk, butter etc. whilst also taking regular moderate exercise. Take a walk around the garden or a walk to the post box. Sometimes weight loss is due to loss of muscle mass. Just doing day-to-day things and eating protein will build up the muscles and their strength.

Post operative complications

After an operation on the stomach or oesophagus patients may experience feelings of being full and have a poor appetite. Here, peppermint tea, green tea or even a glass of sherry might help to stimulate appetite.

One of the main causes of reflux is a problem with a muscle known as the lower oesophageal sphincter, which is situated between the top of the stomach and the bottom of the oesophagus. This works in a similar way to a gate. It opens to let food into the stomach and it closes to prevent any acid leaking back up into the oesophagus. However, in people who have had an operation on their stomach or oesophagus, the lower oesophageal sphincter, may have been removed, allowing stomach acid to pass back into the oesophagus, causing symptoms of heartburn. This can be made worse by eating citrus fruits, taking caffeine or peppermint. A drug like Domperidone which causes the stomach to empty may help, as might eating slowly, and not lying down too soon and or eating late at night.

A suggestion from one of the listeners was to take of apple cider vinegar diluted with water.

If vomiting occurs this could be because portion sizes are too big. Get used to what you can manage. (Little and often is the maxim again.

For diarrhoea, codeine can help. It can take a long time for the bowel to settle down after an operation, and it is not necessarily what you are eating, so keep trying different things..

Gastric dumping syndromes

  1. Early dumping This happens when the small intestine fills too quickly with undigested food from the stomach due to the lower sphincter of the stomach having been removed. Dumping begins during or soon after a meal. Symptoms of dumping include nausea, diarrhoea, low blood pressure and fatigue.
  2. Late dumping People with this syndrome suffer from low blood sugar, or hypoglycaemia, because the rapid dumping of food triggers the pancreas to release excessive amounts of insulin into the blood. Other symptoms can be lack of visual coordination and light-headedness. The immediate solution is to have something sugary to eat quickly.

To try to prevent this syndrome, try to add more fibre to the diet and reduce the sugar, as sugary foods leave the stomach first. Fibre coats the sugar and slows it down. Take sugar with other parts of the main meal. Oat cakes are good. Fizzy drinks will cause you to feel bloated and full because of the gas.

Pancreas related problems

Steatorrhoea, or fatty stools (white stools or yellow stools), is caused by the pancreas is not making enough enzymes. Pancreatic enzyme supplements can be used in cases of pancreatic insufficiency. In addition, you may require nutritional supplements such as vitamins and minerals as absorption of these may be diminished. Creon capsules which contain pancreatic enzymes can be sprinkled onto meals. This may improve stools and help fat digestion and absorption, and hence weight gain. A questioner asked was it better to put up with diarrhoea or to take Imodium long term. Sarah said that it was OK to take Imodium long term but that it was important to get the dose right to avoid constipation.

Late occurring problems

There can be stricture or tightening at the join between the two sections of "tubing" after removal of a section between them. If scar tissue occurs at the top of the stomach, patients may experience a sudden painful spasm or even vomiting. If this happens, you can try adapting the texture of the foods. The stricture can also be surgically stretched and dilated which may relieve symptoms.

Calcium may not be absorbed properly. We are not sure why this happens: it could be because there is not enough transit time. Blood levels can be tested and a calcium supplement given.

Anaemia may develop. The stomach contains intrinsic factor which helps to absorb B12. An injection of B12 vitamin every three months will be needed after total gastrectomy, and possibly after partial gastrectomy. See your GP for a blood test.

Re-absorption of bile salts may be affected. Damage to the part of the small intestine can affect bile salts re-absorption.

There could be a bacterial overgrowth, as surgery can also cause problems with the direction of the peristalsis of a section of the bowel, reversing the direction of movement of the bacteria. Bacteria which should be in the large bowel end up in the small intestine where they shouldn't be. This is most common when a loop of bowel is bypassed but left in place, so that food does not pass down it anymore. This may be unavoidable. This may lead to nausea or vomiting, but most commonly to diarrhoea. Antibiotics and/or probiotics are often used to treat this problem.

Health maintenance phase - cancer survival eating.

  • Eat 5 or more servings of fruit and vegetables per day.
  • Wholegrain cereals are best.
  • Limit red meat consumption especially those processed and high in fat.
  • Adopt a lifestyle including 30 minutes or more of moderate activity 5 or more times per week.
  • Maintain a healthy weight throughout life, and lose weight if currently overweight.
  • Limit consumption of alcoholic beverages to 14 units per week if a woman and 21 units if a man.
  • If on a healthy diet, one should not need to take supplements but in any case, one multivitamin per day should be sufficient.
  • If you are taking Glivec or Sutent - some drugs share the same pathways and can interact with the medication. A pharmacist or Doctor can advise.

The evidence is small on what can influence cancer care, and more data is needed.


Take care where you get your data; ensure it is from a reputable source, like Cancer Backup, Cancer Research UK or the Rarer Cancers Forum.

We are all different so will need individual assessment.

Start with high calorie diet after surgery and then increase variety. If long term problems persist it might be valuable to see a dietician, a gastroenterologist or your GP to discuss them.

Questions and Answer Session

Question: I was given no diet advice at my hospital. What should one do in that case?

Answer: You can ask to see a dietician no matter what hospital you are in.

Question: Is being a vegetarian at a disadvantage?

Answer: No, provided you get the alternative nutrients from other foods.

Question: Is peppermint good for lower digestion problems?

Answer: Iliac problems can be alleviated by peppermint drops. Peppermint helps to relax the sphincter muscles.

Question: Can you recommend anything for cramps?

Answer: Not sure, maybe a calcium supplement would help.

Question: What is the difference between a dietician and a nutritionist?

Answer: A dietician is a health professional who has university qualifications and a certain period of practical training in different hospital and community settings. A dietician is an expert in prescribing therapeutic nutrition.

The title "Dietician" is protected by law in many countries such as Canada, USA, South Africa, Australia, and the UK.

A nutritionist is a non-accredited title that may apply to somebody who has done a short course in nutrition or who has given themselves this title. The term Nutritionist is not protected by law in almost all countries so people with different levels of knowledge can call themselves a "Nutritionist".

Question: What can help with heartburn?

Answer: Gaviscon may help. Making a diary of what foods you eat and when, may enable you to isolate troublesome foods. Try eating early.

Question: Have you any remedies for distension or bloating?

Answer: Again as certain foods can cause it, keep a diary and isolate the most likely ones. Avoid eating beans as they produce wind. Some people may find probiotics helpful. There need to be bacteria in the bowel, and these can have become depleted. Probiotics can replenish them if the symptoms are not too severe. There is a liquid capsule you may be able to obtain which contains more bacteria for the more severe symptoms. (VSL#3)

Questions on the sheet which Sarah did not answer at the meeting, but answered later by email

Question: How can I get iron if I don't eat meat?

Answer: The best iron sources are from red meat, however, dried fruits, beans, green leafy vegetables, breads and cereals are also good sources (most bread and cereals are fortified with iron in this country). Vitamin C can help the absorption of iron, so having a source of this at the same time may help. Because tannins found in tea, coffee and red wine can inhibit the absorption of iron; it may be best to avoid these around mealtimes.

Question: A TV Program about Other Peoples' Breast Milk showed some people saying that it has helped keep their cancer at bay. What are the nutritionalbenefits of breast milk?

Answer: From speaking to colleagues and doing a literature search I have not found any scientific evidence that suggests that breast milk could cure or benefit cancer patients. Breast milk is to provide babies with adequate nutrition and to help their under-developed immune systems fight infection, so it is unlikely that adults would benefit from this.

The World Cancer Research Fund states that women who breast-feed their children have a reduced risk of pre- and post-menopausal breast and ovarian cancer cancer. The research does not suggest that the child receiving the breast milk has a reduced risk of cancer but does state that it has a number of health benefits in terms of helping the baby's immune system.

(We are very grateful to Chris Rickman for preparing the above notes on Sarah Newton's talk)

Talk by Professor Ian Judson

(Professor of Cancer Pharmacology at the Royal Marsden)

Adjuvant Therapy

According to a US trial, imatinib prevents relapse for up to three years, especially for patients whose original tumour was = 10cm,

Adjuvant therapy is probably most valuable for very high-risk patients (no evidence available yet as to effect on survival, but larger trials are under way that will eventually answer this question. Existing data on survival for patients with advanced disease is based on the first US trial in 2000, which included patients much sicker than most patients are now when diagnosed).

It is not yet known if adjuvant imatinib can eradicate cells that have escaped from the original tumour, rather than simply suppress their growth.

It is not clear whether NICE will approve this use of adjuvant imatinib, even if licensed for this indication.

Neoadjuvant Therapy

Imatinib given before surgery can:

  1. make a subsequent operation possible;
  2. make a subsequent operation less extensive (and hence better for the patient).

Most patients in the Royal Marsden sample responded well to neoadjuvant imatinib and their subsequent progression and overall survival was good. Strictly speaking, neoadjuvant treatment is not covered by the current product licence, but treatment is possible if the surgeon interprets the rules appropriately.

Forthcoming Trials

  1. Imatinib vs Sutent as first line treatment (important for the understanding of the behaviour of different mutations). Trial now suspended by Pfizer.
  2. Nilotinib vs imatinib, as first-line treatment of metastatic GIST. This is likely to start in December, at Royal Marsden and 3-4 other centres in UK. Nilotinib can be effective against some imatinib-resistant tumours, and appears to be better tolerated than Sutent.
  3. IPI-504 (Infinity), which inhibits HSP90 protein. This is likely to start in November/December. This is a demanding trial for patients: intravenous injections twice a week; have to be off other drugs; placebo-controlled (but quick changeover from placebo if disease progresses).
  4. 800mg imatinib vs Sutent after progression on 400mg. A current trial to assess the degree of benefit of doubling dosage of Imatinib vs Sutent.
    • Important for prospective patients NOT to have their dosage of Imatinib increased before attempting to enter trial (as that debars them from the trial).
    • This trial is useful for patients as it keeps options open (because it guarantees Sutent even if their PCT would not fund it).

Points raised during subsequent discussion

1. PCTs' funding of drug treatments. Rarer Cancer Forum web site has a section indicating which PCTs offer exceptional cases funding for drugs like Sutent. (Click here to see a list of PCTs and the amount they spend on cancer).

2. Should all GIST patients be under a specialist centre?

It doesn't matter, so long as the team sees enough people with GISTs (not just 2-3 patients), because of the importance of the knowledge of treatments and of trials.

The funding of Sutent is unrelated to cancer centres but depends on where the patient lives. (There is no pan-London or pan-SE funding agreement, though there is one for Birmingham and the North East).

3. Do cancer centres need to build up numbers of patients? No.

4. Plasma tests. The UK needs a reference laboratory for blood tests, to provide a UK service. Setting up of assay to the approved standard is expensive, but then costs per sample are relatively cheap. It can be worth checking the plasma level, if a patient has been one or more years on Imatinib and then the disease progresses. It may be worth increasing the dosage of Imatinib if the mutation is Exon 9 (which needs a larger dosage), or in a small number of cases if the trough level is too low.

5. Mutational analysis now available at The Royal Marsden, Birmingham; Christie's (and elsewhere). There is no need for this service to be available in all centres.

Mutational analysis should ideally be done soon after diagnosis, to give advance warning about likely progression of the disease.

It can be done some time after surgery on the original tumour tissue. It is not worth doing mutational analysis on tumours after relapse, because the mutations that confer resistance can vary from tumour to tumour within the same patient.

6. High Frequency Radio Wave Ablation by radiologist. This treatment (RFA) is useful if there is a limited number of liver secondaries, or if one tumour is growing while the others remain under control.

7. Combination therapies. There are no trials available in the UK at present.

8. Wild-type GIST. It is not clear what is the best treatment for these patients. Some may respond to sunitinib. There is an intriguing possibility that the insulin-like growth factor signalling pathway is involved, which may in future offer a possibility for treatment.

9. Problems with NICE methods and methodology. The data on quality-adjusted life years is not standardised, and is applied to particular treatments by contracted-out firms who may have an interest in the outcomes.

The methodology fails to take into account the economic productivity of patients. "Quality-adjusted" is not relevant to GIST patients, as the drugs are so targeted. And the sum of £30,000 as a ceiling for the acceptable cost of quality-adjusted life years is arbitrary.

10. The EQ-5D questionnaires are the basis of NICE methodology. At the request of Roger Wilson, all patients attending the session completed an EQ-5D questionnaire, to help Pfizer and Novartis in their future negotiations with NICE.

(We are grateful to Simon Price for making the above notes on Professor Judson's talk.)

Business Meeting

1. Retirement of Roger and Sheelagh Wilson

The meeting started with the announcement that Roger and Sheelagh Wilson would be standing down from GIST Cancer UK. Judith Robinson (Chairman) and Dave Cook thanked them both for all they had done in organising the meetings, setting up the group and championing the patient cause over the last few years. Roger's knowledge has been significant in the success of the group and Sheelagh has organised the meetings with great efficiency.

2. Setting up the Charity

Judith Robinson (JR) advised the meeting that the Trust Deed for the Charity Commission was prepared. It had been hoped that the trustees would be able to sign it after the meeting but unfortunately one of the trustees is unwell and now feels unable to take up the position. Judith asked for a volunteer, who has a few hours to spare and could attend two meetings a year and who would like to become a trustee, to speak to her after the meeting. Those who had agreed to become trustees were introduced to the meeting and are:

Judith Robinson
Irene Cook (Treasurer)
Terry Dickinson
Michael Sayers
Sheena Kynoch
Val Harris (not present)

(Note: Subsequent to the meeting Chris Rickman kindly volunteered for this position)

3. Publications

The Patient Guide to GIST produced by Das Lebenshaus (support organisation for German speaking people) is now in its second edition. This has been translated and with some minor alterations is ready for publication. The second edition is available on the website.

At the present time there is no funding to print the English edition. The translation was paid for by Novartis. Further representations are being made to Novartis for funding to print this patient guide. If this is not successful approaching Macmillan may be another option.

A leaflet entitled "Compliance with treatment", produced by the French GIST patient organisation Ensemble contre le GIST, has been translated into English and printed, and is now available.

4. Publicity

Publicity is a very important issue. It is apparent that some patients find out about our group some years after their initial diagnosis.

There is a poster available which will be put on the website so anyone can download it. Everyone is encouraged to ensure that there are copies for their own clinics, hospitals and GP practices.

5. Expenses

Attendees at the meeting were advised that there were expense claim forms available on the administration desk for anyone who wished to claim expenses.

6. Donations

Funding is limited and so donations are always welcome.

7. Next meeting

The next meeting will probably be in May and will be held in the midlands or north of England.

8. Any other business

  • Irene Cook reported that she had been shadowing Sheelagh Wilson in order to assist in making future meetings run smoothly
  • An attendee asked if there was anywhere in the UK where a patient could have mutational analysis done at their own expense.
    It is understood that mutational analysis was originally undertaken in Belgium, but is now being done at The Royal Marsden and at The Christie, but whether this could be paid for by patients in other areas is unknown. JR agreed to check.
  • It was felt that publicity should reach all oncologists not just GIST experts.
  • A GIST patient asked if anyone had experienced using health insurance for all their treatment. It was generally felt that if you could afford health insurance it was a good backup but that the NHS was serving most patients well.

(Meeting minuted by Sheena Kynoch)

Posted: 26/10/2008