News on Supply of Somatuline Autogel

As discussions over the UK exit from the European Community intensify concerns have been expressed about the post-Brexit supply of some drugs used in the treatment of NETs.  The Trust recently contacted Ipsen to ask about ongoing supplies , and this is what they said:

Ipsen is advanced in its preparations for Brexit and the potential scenarios and challenges that this may introduce. The utmost priority is to ensure there is no disruption to patient supply of medicines. With one of our medicines manufactured in the UK and distributed to over 80 territories worldwide this remains our priority for patients in the UK, EU and beyond. We take this responsibility seriously and have been preparing for the event of a “hard Brexit” or “no deal” scenario since September 2016. We’ve taken steps to secure additional supply where necessary, in addition to being proactive in other ways to ensure there is no disruption to patients.


Steve Chung
Senior Medical Information Officer, Ipsen Medical Information UK & Ireland

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A number of our members asked for a summary of this event on 10 August. Firstly a very big thank you to Maggie's and to Kelly the nutrition advisor for hosting the event. Kelly had clearly done her homework on NETs and was so responsive to our very many questions. Kelly was clear to point out that no one should make a drastic change to their diet without consulting their doctor. Bearing in mind that there are at least 40 different types of Net and we are all so different Kelly's advice could only be in general terms. It is also important to remember that that some foods cannot be taken with certain treatments.

The general advice was very welcome. Who knew that soya will be of little nutritional benefit unless it has been part of your diet pre puberty?

People were interested in fruit juice and juicing, which is kind of trendy at the moment. Kellie's advice was it is usually better to eat an apple than to drink apple juice that is because some of the nutrients are lost in the juicing process. Juicing does however have a place especially as part of a low fibre diet.

A question that may be relevant to many who have liver mets was how to keep the rest of the liver healthy. In short the answer was broccoli and kale but to increase the amounts in the diet slowly.

Kelly wanted people to know that they can book a one to one appointment with her either by contacting Maggie's or emailing her at ksfanderson@gmail.com.

Further information on diet can be found in the new Net Patient Handbook https://www.netpatientfoundation.org/wp-content/uploads/NET-Patient-Foundation-Handbook-section-5-Web.pdf

Kelly's Food to Glow website also has recipes Kale and Apple Cake is particularly interesting https://kelliesfoodtoglow.com/ with links to her Social media sites.

Kelly handed even handed out a one week menu for a Low Fibre Diet this is not on her website yet but if you are interested we can send you a copy.

I hope this is a fair summary but always remember to consult your doctor if making changes to your diet - we are all different.


Lesley's Ladies are taking part in the Pretty Muddy Event being held at Ingliston on 16 September. Lesley's friends wanted to do something to mark the first year since they lost their friend Lesley Watson to NET Cancer. They are raising funds for the Trust, so why not get along their and support them. They have already raised over £500.00 which is fantastic. You can support them via their just giving page here

https://www.justgiving.com/fundraising/lesley-watson17

Hope you have fun getting very muddy ladies.


Our Information Day this year will be on Saturday 23rd September at Maggie's in Aberdeen. We have some great speakers lined up including Dr. Alex Graveling, Consultant Physician in Diabetes, Endocrinology and General Medicine at Aberdeen Royal Infirmary. Our information days are popular and places are limited so please book your place now. You can download our poster/flyer here.

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T: 07376 251249

E: info@taect.scot

© The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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