We are delighted to announce that Ipsen Ltd have agreed to sponsor four support meetings a year. I think it is a great move in patient care to see collaborations between the pharmaceutical industry and direct patient care, with no connection to any brand or product.

There are 3 of the talks on the site if you wish to download them.

Download talks

2008 Netpatient Support talk – Phillip>>

Glasgow Metting 2008>>

Nick Reed Patient Support Meeting Treatments 20 04 2008>>

Peter Gwilliams Document – powerpoint.

John Ramage – powerpoint

John Ramage text

Philippa Davies – powerpoint

SUPPORT GROUP MEETING 4TH NOVEMBER 2007 BASINGSTOKE

Question & Answer Session

Q. NET01 Study is a combination chemotherapy study that has just been set up – where is set up?

A. This is a randomised phase11 study that is multi centred. They are looking for 84 patients in total. The 2 arms are either the patient has capecitabine and streptozocin or the patients have capecitabine, streptozocin and cisplatin. The patient group will be unresectable or metastatic neuroendocrine tumours.
As with all clinical studies there are strict inclusion and exclusion guidelines and this will be discussed in full with you.

Q. How common is insulin imbalance/diabetes as a side effect of either treatments or cancer elsewhere and what are the implications

A. Medications such as Somatostatins inhibit peptides and hormones. There can be an imbalance in blood sugar levels in diabetics. This should be monitored carefully
The type of tumour such as insulinomas increase insulin production and
Gluconomas increase blood sugar. This is caused by the tumour.

Q. I have had 5 hepatic embolisation procedures so far. Is there any reason why I could not continue? If not what is the alternative

A. Transient results
This procedure can be repeated several times if the response is promising/successful both clinically and in terms of the patients quality of life improving. There are alternatives in some hospitals – if not available in your hospital you can request to go somewhere else.

Q. Can we have a political lobby to get standardised funding at PCTs?

A. This is something that the Foundation is keen to advance. Comments from the floor included:

Try to by-pass the GP – if the GP is not allowed to write the prescription confirm with the PCT that they will pay and obtain the prescription from the consultant.

After 4 appeals to the PCT patient went to the media – ITN and got funding immediately!

PCT’s are worried about opening a ‘floodgate’ however monthly LAR/ Lanreotide is fully licensed for use in neuroendocrine tumours.

Other alternatives are available if the GP will prescribe but not give and that is in the form of health care at home. Ask your nurse for information if relevant to you.

Q. Are there contra-indications with regard to full body massage?
I have read that there may be problems involving the lymph system.

A. There should be no major complications. The Royal Free Hospital complimentary team have specially trained masseurs for oncology patients. It is very important to go to a specialist centre.

Q. Any indications that acupuncture can be beneficial (or otherwise)?

A. Acupuncture can help pain and stress in some relaxation. There is anecdotal evidence of good positive results. Again, always go to recognised acupuncture and reflexology specialists. Check for registered practitioners.

Association of Reflexologists
5 Fore Street,
Taunton
Somerset
England
TA1 1HX
Tel: 0870 5673320 (Overseas: 01823 351010)
Fax: 01823 336646
Email: info@aor.org.uk
http://www.aor.org.uk/

or

The British Acupuncture Council (BAcC)
63 Jeddo Road, London, W12 9HQ, UK
Tel: +44 (0) 20 8735 0400 Fax: +44 (0) 20 8735 0404 http://www.acupuncture.org.uk/

Q. Holiday insurance is there any companies that will cover me?

A. Cancer Bacup 0808 800 1234 produce annual list –
http://www.cancerbackup.org.uk/Resourcessupport
/Practicalissues/Travel/Travelinsurance .

MacMillan Cancer Support – 0808 808 2020 http://www.macmillan.org.uk/Get_Support/Find_information
/Getting_travel_insurance/Travel_insurance_companies.aspx

http://letsbeatcancer.co.uk/travelinsurance.aspx

Nat West Gold Card offers insurance if you can say ‘No’ to 5 questions. It is possible to come off prescription drugs such as Imodium and buy over the counter thereby being able to confirm that you are not taking prescription medication.

Q. Can chemo-embolisation cause pancreatitis?

A. Chemo-embolisation rarely causes pancreatitis. It can rupture the gall bladder and cause damage to the small bowel, but this is very rare.

Q. What is involved in MEN1 testing? Is it possible that this may have been done without our knowledge?

A. Genetic testing is always carried out with patient’s knowledge – it is totally y wrong to screen patients without full consent.
www.amend.org.uk has a great website and all the information needed for MEN conditions.

Q. How high is the risk to my children inheriting the disease if any?
Q. Can this condition be passed down through the genes to my children?

A. Only 10% pancreatic NETS are shown to also have MEN1. Suspicions arise from thorough family history and initial NET screening blood tests.
For the majority of patients there is no indication for genetic testing.

Q. Much has been said about a ‘multi disciplinary’ approach – who takes the lead?

A. In most hospitals there will be a lead consultant in the speciality, however it is very much TEAM work where everyone voices their opinion at regular meetings. There are many dimensions to the care of a NET patient, and if a multidisciplinary team was not up and running it would mean that the patients would have to be sent to many different specialities which would be very time consuming and distressing for the patient. With an MDT all theses specialties meet and discuss the patient at the same time.

Q. Can Carcinoid be diagnosed just on the liver ultrasound?
Does it have a characteristic pattern?

A. An ultrasound is a cheap and easy examination where the diagnosis of
carcinoid can be incidentally diagnosed. An ultrasound cannot tell whether it is a carcinoid or other tumour.

Ultrasound not specific for NETS.
There are specific scanning techniques for NETs e.g. the octreotide scan.

Q. What is Carciniod Crisis?

A. This is a life threatening condition where the tumours rapidly release hormones.
It is most likely to occur in patients with a small bowel primary during interventional (e.g. surgery) procedures.
There are ways of preventing this – prophylactic infusion of Octreotide 12-24 hours pre and post procedure. The anaesthetist increases IV treatment during surgery – each time own risk.

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