Margaret McLean

Thursday 4th November 2021

It is with great sadness we advise the passing earlier today of our friend and colleague, Margaret McLean. Margaret has been a Trustee for several years, many of these as our Treasurer. Margaret was a keen supporter of our many events and her cheery disposition will be greatly missed at our meetings and lunches.

Our thoughts are with Alastair and all the family.

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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June 2021

A recent press report by Ben Mitchell highlights an exciting development in the field of NETs research...


Researchers in the UK and US have discovered that a drug can stop the growth of, and even shrink, an advanced form of cancerous tumour.

The treatment, known as PEN-221, has been shown to stabilise neuroendocrine tumours (NETs) in almost 90% of patients and reduce the size of tumours in almost 40%. NETs are rare cancers usually found in the pancreas, bowels or lungs but can also develop in other parts of the body, with 4,000 newly diagnosed cases a year in the UK.

They arise from cells in the body forming a link between the nervous system and the endocrine system, a collection of glands which produce hormones. The treatment combines an anti-cancer molecule with a hormone to deliver the drug direct to the tumour site, via a drip.

Hampshire charity, Planets, at University Hospital Southampton, led by Dr Judith Cave, was among the sites to test the medication. Dr Cave, who was involved in trials with 32 patients, said "We are also hugely grateful to our patients as, without them, this would not be possible."

Layla Stephen, a co-founder of Planets, which helps patients with pancreatic, liver, colorectal, abdominal and neuroendocrine cancer, took part in the trial. She said that she had seen a 20% reduction in her tumour burden and added: "I am now quietly confident that this could be a potential game-changer for certain NET patients if the continued next stage trials go well".

The study, led by the University of Texas and funded by Tarveda Therapeutics, showed that the drug stopped the growth of tumours in 88.5% of patients.

Monday, 17th May 2021


We are delighted to welcome Professor Anna Campbell who will talk to us about the benefits exercise can bring to all cancer patients, including those with NETs. Prof Campbell will be joined on the talk by Kenny Nattrass, a personal trainer who now works with Anna to design bespoke exercise programs for cancer patients.


You can watch a recording of this NET Natter event by clicking here and entering passcode taect1705!

Updated: Apr 6

We were delighted to welcome Tara Whyand, specialist in dietary needs for NETs patients, to a Q&A virtual meeting on Zoom on Wednesday 31st March 2021, at 18:30. Tara was pleased to respond to NETs diet questions from 31 invited members and guests.

You can watch a recording of the event by clicking here and entering passcode WBvx^#69