Resources

Medication Financial Assistance

Novartis Pharmaceuticals Corporation, Sandostatin LAR – Sandostatin LAR Co-Pay Card

Novartis Pharmaceuticals Corporation, Afinitor – Afinitor Co-Pay Card , select Advanced PNET

Ipsen Pharma S.A.S., Somatuline – Somatuline Depot Co-Pay Card

Lexicon Pharmaceuticals, Xermelo – LexCares

Websites

Optimizing your survivorship

The Carcinoid Cancer FoundationA comprehensive resource and a good place to begin for the newly diagnosed. 

Caring for Carcinoid Foundation – The website of this organization, which is dedicated to discovering cures for NETs, is chock full of helpful information.

The North American Neuroendocrine Tumor Society Provides guidelines for diagnosis and management here.

The Neuroendocrine Carcinoid Cancer Awareness NetworkThe website of a very active group which sponsors conferences and fund-raising events.

Online Groups

NET Patients Sharing Knowledge – “This is a secular discussion group where NET patients and their caregivers of all faiths or no faith are welcome. We are not a conventional support group. Our focus is the scientific aspects of treatment. We are here to share our knowledge and experiences, to help newly diagnosed patients understand more about their disease and to share how we live with NETs.

The Carcinoid Cancer Online Support Groupan unmoderated forum for patients, caregivers, researchers, and physicians to discuss the clinical and nonclinical aspects of carcinoid neuroendocrine cancer.

Lovable Lungnoids on Facebookonline support for those affected by bronchial and pulmonary NETs.

Carcinoid Cafe on Facebookonline support for those affected by NETs.

Apps

The Carcinoid NETs Mobile App  is a new free tool for carcinoid/NETs patients and their caregivers to keep track of all aspects of patient health.  It is available for both IOS and Android.

 Selected Videos

2016 NYC Regional NET Patient Conference Videos, Montefiore Einstein Center for Cancer Care, 16 videos

NCAN 2016 National NET Patient Conference, New Orleans, LA, 20 videos

NANETS 2015 Neuroendocrine Tumor Symposium Abstracts – October 18, 2015

OncLive Panel Discussion on Pancreatic Neuroendocrine Tumors – July 28, 2015 – 4 videos

LACNETS & Caring For Carcinoid Foundation 2015 Neuroendocrine Tumor Patient & Caregiver Educational Conference –  Cedars-Sinai Medical, Los Angeles, June 27, 2015 – 16 videos

Society of Nuclear Medicine and Molecular Imaging Third Theranostic World Congress, Patient Edition – John Hopkins University, March 12-14, 2015 – 18 videos

Caring For Carcinoid Foundation & Stanford 2015 NET Conference –  Stanford Medical, March 1, 2015 – 8 videos

Caring For Carcinoid Foundation Stanford Patient Education Conference 2013 – 9 videos

New Jersey Carcinoid Cancer NETwork Conference, November 2, 2013 – the videos from this conference are located on the Carcinoid Cancer Foundation website.

Carcinoid NET Conference, NJCCN 2011, Dr. Rodney Pommier, “Surgery for Neuroendocrine Tumors”highly informative on the topic of surgical resection of all types of carcinoid tumors.  Note that the slides are quite graphic.

Carcinoid Cancer Foundation Presents ABC’s of Carcinoid and NETsa short primer for “beginners”.

 Books

Zebra Talk: Navigating the World of Neuroendocrine Tumors – A Handbook for the Newly Diagnosed and Their Primary Care Physicians, edited by Suzi Garber, who states that the handbook “is intended as a reference for those newly diagnosed with NETs (neuroendocrine tumors), in the process, or hoping to explore this bewildering world. It is also a guide to resources that can empower patients through knowledge and the mentorship of others to make informed decisions for medical care.”

Blogs

Beth’s Adventures with Carcinoidthe journey of a mid-gut carcinoid patient told with wit and lots of interesting information.

Ronny Allan-Living with Neuroendocrine Cancer – A decidedly active and not passive British NET patient on a mission for NET awareness.

Lucysnoidblog this knowledgeable mid-gut carcinoid patient was diagnosed in 2006 and has been blogging about it since 2008.