GSUK Patient Meetings - 2007 London Reports

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

GIST Support UK Meeting , 25th October 2007 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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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

Membership

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.

Funding

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.

Meetings

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: 05/11/2007