NET Newsletter
November 2019
NET Patient Day 2019
We had a fantastic day in The Maldron Hotel on Saturday, 9 November. Over 120 patients, family and friends attended to listen to presentations from Dr Rachel Crowley on the NETs Centre of Excellence in St Vincent's and also a very useful talk on nutrition and NETs by Ms Deirdre Burke and Prof Donal O'Shea. We also had Dr Gordana Kozlovacki from Uppsala Centre of Excellence who spoke about lung NETs and gave some really interesting case studies. Mental health is often over looked and we had a fascinating talk by Ms Kim Winter, Psychotherapist who works with NET Patient Foundation and AMEND in the UK. We were delighted to have the Irish Cancer Society present this year and we heard from Ms Caroline Miller, ICS nurse based in the Daffodil Centre in St Vincent's. We finished the day with an open forum and the panel of speakers were joined by Prof Dermot O'Toole, Clinical Lead for NETs Ireland and Ms Catherine Donohoe from the HSE Travel Abroad Scheme.
It was a lovely day to catch up and chat with everyone and we all enjoyed the 'NET' cupcakes and the carvery lunch that completed our day.
Photos of the day have been uploaded to Flickr which can be viewed here:
https://flic.kr/s/aHsmJv5eRC
Slides of the presentations can be viewed here;
Rachel Crowley, Gordana Kozlovacki, Kim Winter, Caroline Miller, Deirdre Burke and Donal O'Shea
We are looking forward to seeing you all in 2020.
Lutetuim/PRRT Approval in Ireland
The HSE is assessing the drug Lutathera (Lutetium-I77) which is the core drug used in PRRT therapy for use in Ireland. The HSE have tasked the NCPE (National Centre for Pharmacoeconomics) to evaluate the drug and NET Patient Network has made a submission in favour of getting the drug approved.
You can follow the progress of the assessment here:
http://www.ncpe.ie/drugs/lutetium-177lu-oxodotreotide-lutathera/
Living with NETs Website
Ipsen have created a very helpful and informative website about living with NETs day to day. The website is designed for patients and caregivers and gives very good information on topics like travelling, coping with emotions, working, etc. Click here to access the website: https://www.livingwithnets.co.uk/
Update on SCAN Survey
Thank you everyone for participating in the SCAN survey and we have reached our target of 100 participants from Ireland. We had 118 respondents in the end.
We are looking forward to hearing the results in the new year.
Gary Kelly Cancer Support Centre
Our treasurer, Garry Westby, recently held a solo exhibition of his Watercolour Paintings in The Skerries Mills, Skerries in aid of the Gary Kelly Cancer Support Centre, Drogheda. Like ARC House, this centre offers a wide range of services to cancer patients regardless of domicile. Garry was pleased to present a cheque for €2,500 to Ann Tracy, Director of Fundraising (GKCSC) representing sales for his paintings.
Facebook
The Facebook groups are in use and hopefully of benefit to everyone. If you haven't joined them yet, y ou can start by clicking here
In case anyone is concerned, please be assured that all of our Facebook groups are closed and private. This means that only members of the group can view posts in the group. The discussions are not visible to anyone outside of our group. Membership is controlled by our own moderators.
All NET patients, and their families and friends, are welcome to join our groups and help to build the Community side of NET Patient Network. There is a general discussion group for all members and also a special group for patients only.
We look forward to seeing you there and hope you will make use of the opportunity to receive support from & offer support to, Irish NET Patients, Caregivers of NET Patients & Families of NET Patients.
To help you get set up, we have written instructions, you can start by clicking here or going to http://netpatientnetwork.ie/index.php/forum/facebook/
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