Supporting the

Neuroendocrine Cancer Community

NET Patient Foundation holds Patient Education Event in London

Sep 19, 2019

It was great to see so many of you attending the Patient Education Event held Tuesday 3rd September in London. This event focused on Neuroendocrine Cancer research, the latest treatments and looking to the future – what’s next for NENs? 

Neuroendocrine Cancer is not one disease, it comes in many forms as we are all increasingly aware. As our knowledge grows it can become more complicated to truly understand and so it is easier to generalise in terms of site e.g. lung, pancreas or breast. 

But the type and biology (or behaviour) of cancer is important to know, to enable to right treatment to be given.

The NET Patient Foundation undertakes in-house research as well as supporting external clinical trials. Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer. No major research organisation has a dedicated research programme for this cancer type, therefore a vital part of our work is supporting researchers and specialist centres undertaking neuroendocrine research and encouraging more research to be carried out in the future. Our clinical fund supports pilot research projects in the UK. We run part of our research programme in collaboration with our friends at UKINETS.

One of our grant recipients in 2018 was Kate Lines, a PostDoctoral researcher, who presented her work on molecular genetics in pancreatic neuroendocrine tumours and was one of the key speakers at this Patient Education Event:

“I am delighted and very grateful to have been awarded NET patient foundation award at this years UKINETs meeting. I am very much looking forward to beginning the study. As an early career scientist this grant is especially important as the data generated from the project will help form the basis of my future NET research career”.

“The aim of the project is to develop a new drug for the treatment of pancreatic neuroendocrine tumours (PNETs). We have previously shown that a drug called JQ1, which inhibits the function of a family of proteins called the BET family, could reduce the number of PNET cells in the laboratory. This family of proteins help to control the expression of genes that promote tumour cell growth and prevent tumour cell death, by binding to chemical marks in specific DNA regions, also known as epigenetic regulation. Therefore, by inhibiting the activity of the BET proteins we were able to prevent the cell growth and increase cell death. 

Although JQ1 has shown promising results in PNETs, similar to a chemotherapy, it can act on any cell that expresses the BET proteins, and therefore may have side effects. The focus of this study is therefore to generate a new drug that specifically targets JQ1 only to NET cells or tissues. To do this we are using a man made version of the hormone somatostatin, called a somatostatin analogue. Receptors that somatostatin binds to are only expressed in certain endocrine tissues, and are seen in high levels in PNETs. Therefore by making a drug with a somatostatin analogue joined to JQ1, we plan to target JQ1 only to the PNET cells. We will test the ability of this new somatostatin-JQ1 drug to reduce the number of PNET cells. If successful, the ultimate aim is to use this data to plan a clinical trial of the somatostatin-JQ1 drug in PNET patients.”

We also heard talks on Novel Biomarkers for Small Bowel Neuroendocrine Tumours, New Radionuclide Therapy (PRRT) Developments in NET Treatment and the Emerging and Developing use of Digital Health (from Apps to Patient Reported Outcomes Monitoring) – copies of these talks are available on request. There was also a very informative and entertaining talk on the Liver and Liver Directed Therapies!

We have 2 further events scheduled before the end of the year – one is already fully booked – however we do have reserve lists for any cancellations! Further information can be found here. 

We are very proud to report that feedback from these events is consistently positive – this event was no exception: 

“Thank you all for all your amazing work. Incredible people. Thank you. A superb day, so worth the trip from Cambridge”

“Good to feel there are people trying hard to cure this disease”

“the confidence received from knowing that such wonderful professionals are looking after and interested in our future“

“its very interesting to learn about the progress being made into the treatment and analysis of NETs”

“Great afternoon – well organised, informative and thought provoking”