GCUK Patient Meetings - 2006 London Reports

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

GIST Cancer UK Meeting , 26th October 2006 At Chandos House, London

We had a very successful meeting at Chandos House in London on 26th October, attended by over 50 GIST patients and their carers.

After coffee and lunch, the meeting started with the chair, Judith Robinson, noting that it is now five years since this group was formed. She highlighted the Shared Experiences website run by Novartis, and our own interactive website which is bringing new patients to the group. She went on to welcome Dr Beatrice Seddon, a Consultant Oncologist specialising in GIST from the Sarcoma Unit at University College Hospital, and Ms Cerys Propert-Lewis, who is a Clinical Nurse Specialist from the Sarcoma Unit at the Royal Marsden Hospital, who were then available to answer our questions.

Speakers & Session Reports

Go to:

A question and answer session covering current position on mutational testing, coping with side-effects of Glivec, and similar issues


Dr Beatrice Seddon, a Consultant Oncologist specialising in GIST from the Sarcoma Unit at University College Hospital
Ms Cerys Propert-Lewis, who is a Clinical Nurse Specialist from the Sarcoma Unit at the Royal Marsden Hospital

Question: What are we doing about genetic analysis for GIST patients?
Answer: BS described the nature of the genetic mutation of the tumours in GIST patients. She gave a clear explanation for those who had not seen it on this website. The relevant part of the information is that we now know for sure that those with exon 11 mutations respond best to Glivec. Those with exon 9 also respond, although fewer patients respond, and for a shorter time. There is some evidence that these patients may respond better to a higher dose (800mg) of Glivec.

A phase 2 study of Sutent in patients who have relapsed on Glivec shows that tumours with exon 9 mutations respond better than tumours with exon 11 mutations. At the moment Glivec is given as first line treatment for patients with advanced metastatic disease. There is no move at the moment to give Sutent prior to Glivec in such patients.

Question: Are we too slow in getting genetic information for all GIST patients when the Americans are all going ahead with this?
Answer BS: At the moment mutational testing is done in a few places in the UK, but is very slow and there is a backlog at the moment. There are more laboratories preparing to do it. The mutational status of primary GISTs is of purely academic interest at the moment, as are secondary mutations, because it will be a while before we can allocate patients to specific drugs according to their mutation.

An attendee commented that it is possible to arrange for gene mutation testing to be done in Belgium for 300 Euros. However BS commented that it would be best to have a discussion with one's oncologist before getting this test done.

Question: How does 400 mg compare with other doses of Glivec?
Answer BS: Some patients have their Glivec dose reduced to below 400 mg because they cannot tolerate the side effects. This is the only reason that the dose should be reduced below this level, however well it is working.

After primary surgery, Glivec should not be given as a preventative measure - there are no study results yet to show that this is the right thing to do. In addition, Glivec is not licensed for this use, so as doctors we are not allowed to prescribe it in this context. (There are studies currently underway, investigating the use of Glivec following complete surgical removal of a tumour.) All those who have had primary surgery should be followed up with regular scans. The frequency of these scans depend on the risk stratification of the tumour as defined by current UK GIST guidelines.

Question: Doctors often need information about GIST and Glivec, and are not aware of what interactions there may be between Glivec and other drugs.
Answer CP-L:Pharmacists are the best people to ask for information about this, as they have access to the necessary reference books and web sites. One patient commented that he has a carry-around card to say that he has GIST, what his medication is, and what should or should not be prescribed. It was produced by the German GIST group, and it has been agreed that GIST Cancer UK should get this type of card organised and distributed. Many drugs such as sleeping tablets actually enhance the effects of Glivec - others inhibit it. We now know you can have grapefruit juice as long as it is not within 2 hours of taking Glivec.

Question: Does a needle biopsy take enough material to get a mutational test done?
Answer BS:Perhaps, but more tissue may be needed. There is always a small risk that a biopsy can "seed" cancers.

Question: 800 mg is giving me bad side effects. Will 600 mg or less give fewer?
Answer BS: Side effects often get less in time. You could try to cautiously decrease the dose to see if the side effects decrease to an acceptable level. However, there is not a lot of information on the efficacy of the drug at 600mg versus 800 mg, only for 400 mg versus 800 mg.

Question: Should a consultant give a patient a life expectancy if this is not asked for?
Answer: Each doctor has their own personal style and BS said she only gives the information that she thinks the patient indicates he/she wants. Roger Wilson said that if you are really concerned about the way you have been treated, it is very important to go to the PALS (Patient Advisory and Liaison Service) manager at your hospital who will look into the problem. This may help other patients, so do it even if it is difficult for you.

Question: Do alternative or complementary treatments help, and what about diet?
Answer BS:There is very little information available of the effectiveness of such treatments, but she knew that many patients want to do something to help themselves. She sometimes refers patients to the Royal Homeopathic Hospital in London, where there is a clinic specifically for cancer patients.

Question: If a hospital or Primary Care Trust (PCT) refuses to fund Sutent, what next?
Answer BS: There are many new drugs being trialled, but apart from Sutent none has been licensed for use as yet. NICE has agreed to review the rules on Glivec - (currently it must be withdrawn on disease progression and cannot be given at doses above 400 mg.) BS said that some PCTs have given permission for higher doses, although many have declined to provide funding. A survey of those present was taken which revealed that no one on Glivec doses higher than 400 mg was funded by a PCT. One person was BUPA-funded, and another had 400 mg funded by their PCT and another 400 mg from a hospital budget. Two were on Sutent and another patient is about to start a clinical trial with a new Astra-Zeneca drug. NICE may look at Sutent at some point in the future, although there are no immediate plans as yet. Very clear evidence of benefit will be needed for a positive decision from NICE.

Question: What is the role of surgery for metastases?
Answer BS: It is now thought that it may be the right thing to remove metastases following Glivec treatment, when they have reached maximum shrinkage or stable disease. If all disease is removed, the patient could take a holiday from Glivec until it is needed again (if the disease recurred), although no one knows definitely whether Glivec can be stopped in this situation or not. Several recent studies have shown that surgery is of no benefit for patients who have clearly progressing disease.

Question: Why are there so few trials for new drugs in the UK?
Answer BS: The UK has many regulatory restrictions that make it difficult to open studies quickly. This makes the UK an unattractive trial location for drug companies. Roger Wilson said that new moves by the government have initiated a group to help companies with this problem. There is also a new European group of GIST and SARCOMA specialists, ContiCaNet, which will try to facilitate joint trials in Europe.

(The question and answer part of the meeting ended at this point.)

GIST Cancer UK Business Meeting

Judith proposed that the GIST Cancer UK group should combine with Sarcoma UK and that a steering group should be set up. She said that this had been discussed with Dave Cook and with Roger Wilson, and also with Fiona Turner from Novartis. There were no objections to this suggestion from those present, and six people offered to join the steering group.

Roger Wilson handed out a questionnaire about patient care which he asked patients to complete anonymously, so that we can get a better picture of what is actually happening to patients around the country.

Grateful thanks were expressed to Ruder Finn for organising the meeting and to Novartis for funding it.

Tea was then served, and the networking continued for some time. The general feeling was: "When shall we meet again?"

Patsy Thompson

Posted: 4/12/2006