London Zoo – Patient Support Meeting 2006
-
Click on links below to download presentations.
Some of you may have problems downloading these presentations, should you require, we can print of hard copies and send them to you.
Please email andrewgeach@btinternet.com
The Mappin Pavilion at London Zoo was humming. It was the sound of NET patients and their families making new friends at the first support group meeting organised by new charity the NET Patient Foundation, incorporating Living With Carcinoid.
On a hot summer day over 100 people gathered in the light and airy function room in the heart of London Zoo for a three-hour patient meeting that was roundly agreed to be successful and informative.
People travelled from as far as Jersey and Shropshire to hear about the launch of the NET Patient Foundation website, listen to two eminent consultants give an enlightening talk about the latest developments in diagnosis and treatment, meet other patients and forge new friendships over cups of tea and biscuits.
Peter Gwilliam, a founder of Living With Carcinoid, the patient support group that has joined forces with the NET Patient Foundation to create a new charity, opened the proceedings with a warm welcome to one and all. Mr Gwilliam has been instrumental in arranging three previous patient support meetings on behalf of LWC in Birmingham and Reading.
Patients were invited to sit at ‘regional’ tables so they could chat with others who live in their part of the country.
He introduced Andrew Geach, one of the four founders of the new combined charity, who announced the launch of this new website and encouraged those who had not yet found it to log on.
Andrew was pleased to see a good representation of people from most parts of the country – apart from the North and North West. ‘We need to work on that’ he joked.
He explained how patients and their families could now interact through the website’s new, moderated forum, that is already proving to be a highlight of the site.
And looking to the future Andrew explained that a new magazine for patients would soon be in development and that patients would shortly be able to download special patient diaries that would help them to keep track of their treatments.
But Andrew said he and the team that run the charity and the website want feedback and ideas about what they would like to see available, reminding patients it has been set up specifically for them.
One of the new fund raising initiatives for 2006 is a Christmas card design competition – details of this will soon be available via the website.
Peter Gwilliam then introduced Dr Martyn Caplin, consultant in gastroenterology and hepatobiliary medicine, lead consultant at the NET clinic at the Royal Free Hospital in London, and chair of the UK NETs board of consultants with a specialist interest in neuroendocrine tumours.
Dr Caplin who is also scientific secretary of the European board of NETs consultants said he had recently returned from a meeting in Prague attended by 800 doctors with an interest in this disease from around the world. It demonstrated the growing interest and understanding of neuroendocrine tumours.
Dr Caplin spoke about the developments and progress in diagnosis for NETs that can be found anywhere in the body. Historically, he said they had first been recognised as long ago as 1838 and were first classified in 1907.
Since then there has been a growing understanding and more defined classification.
Today the incidence is thought to be 2-3 cases for every 100,000 people, although the level amongst the black community is twice as high, for unknown reasons.
Around 1,500 new cases are reported each year.
Having said that around 1% of the population may develop a NET. It is only within a smaller ‘sub set’ of people that the tumours will act malignantly.
The management of NETs has improved, as doctors have a better understanding of this complex group of cancers.
Dr Caplin said each tumour type has a different biology and prognosis, although all NETs share certain characteristics such as receptors on the tumour cells. Many – but not all – tumour types express hormones that can be picked up via sensitive blood and urine tests.
The key to management is through biopsy of the tumour and study of the histology, he said.
These tests can show how quickly – or slowly – cells are turning over.
As a result of these investigations and studies, each patient will have their own individual treatment plan.
Dr Caplin went on to explain the different imaging techniques that are now used to help doctors determine and monitor NETs – including CTs, ultrasound, Octreotide sand MRI scans.
(The full power point presentation by Dr Caplin at the meeting will be available on the website shortly.)
Dr Caplin then handed over to Dr John Ramage, consultant gastro-enterologist at the North Hampshire Hospital in Basingstoke, who also runs the carcinoid clinic at Kings College Hospital, London to speak about the current treatment options for patients.
Dr Ramage said treatments include alpha interferon injections, emobolisation techniques, and chemotherapy, although he said the latter may be more useful for those with pancreatic NETs.
But he explained there is a new generation of chemotherapy drugs that looked interesting for NETs patients but so far no definitive data were yet available.
There are other drugs such as Avistan and PTK – drugs that have been found to reduce tumour blood flow – and Gleevac that may be of interest in the future although, again, there is not yet the proven data for NETs patients.
Dr Ramage also spoke about developments in radionuclide therapies and surgical options for those where disease is largely confined to the liver.
Some patients do well after liver resection. But only one patient had received a liver transplant in the last five years. Problems can come afterwards because of the immuno suppressant drugs that have to be taken patients could see a return of their disease.
Dr Ramage said doctors had to try and tailor treatments to individual patients and that a number of factors had to be taken into account including the patients quality of life.
He said there are many treatments a lot of them unproven, expensive, and with serious side effects, so improving the patients quality of life should always be the aim.
(The full power point presentation given by Dr Ramage will also soon be available via the website)
Both doctors then took a series of questions from the floor before Peter Gwilliam closed the session and thanked all involved – particularly Dr Caplin and Dr Ramage who had given up valuable time on a Sunday afternoon to address the meeting.
The questions and their answers are currently being transcribed and will be posted onto the website as soon as possible.
Cathy Kalamis
June 12 2006
Feedback to ckalamis@cwgsy.net
