10 Highlights of the Year 2011 for the Carcinoid and Neuroendocrine Tumor Community

As the Carcinoid Cancer Foundation looks back on the year 2011, there were many significant events and advances for the carcinoid and neuroendocrine tumor (NET) community.  Here are 10 of the year’s important stories:

Food and Drug Administration approves new treatments for pancreatic neuroendocrine tumor patients

1)     The FDA approved the first new treatments in nearly 30 years for pancreatic neuroendocrine tumor patients with unresectable, locally advanced or metastatic disease:  everolimus (Afinitor) by Novartis and sunitinib (Sutent) by Pfizer. Read more about Afinitor and Sutent.

2)    Steve Jobs Steve Jobs, the iconic co-founder and former CEO of Apple, died on October 5, 2011. Mr. Jobs was diagnosed with an islet cell pancreatic neuroendocrine tumor (NET) for which he had surgery in 2004, followed by a liver transplant in April 2009.  In late August of this year he stepped down from his role as Chief Executive Officer of Apple. Click here for media coverage.

3)     For the first time in North America, neuroendocrine cancer patients have the opportunity to participate in a clinical trial of Lutetieum-177 (LU-177) with Octreotate.  This new drug clinical trial brings the much-needed therapy of PRRT, peptide receptor radionuclide therapy, to the United States.  The clinical trial is ongoing at Excel Diagnostics and Nuclear Oncology Center in Houston, Texas under the direction of Ebrahim S. Delpassand, MD (pictured below). Approximately 40 patients have participated in the clinical trial to date, with the first patient starting the trial at the end of October 2010.

4)     The second Worldwide NET Cancer Awareness Day united the NET cancer community around the world on November 10, 2011. A global video event aired on the NET Cancer Day website as the sun rose in Australia and moved across Europe to Canada and the United States. Thirty-seven US governors issued proclamations and letters of support for NET cancer awareness. A flag was flown over the Capitol in Washington, DC in recognition of WNCAD.  Events and activities ranging from awareness walks and galas, the release of informational videos, distribution of materials at hospitals and shopping malls, and conferences for patients and medical professionals took place on 5 continents!

5)     The first World Congress on Ga-68 and Peptide Receptor Radionuclide Therapy (PRRNT), Theranostics – On the Way to Personalized Medicine, was held in Germany in June.  The Congress was the creation of Prof. Dr. med. Richard P. Baum from Zentralklinik Bad Berka and Prof. Dr. sc. Nat. Frank Rösch of the Johannes Gutenberg University, Mainz.

First World Congress on Gallium 68 & PRRT6)     More than a dozen conferences for carcinoid and NET cancer patients, families, and medical professionals were held in the United States from New York to California, sponsored by organizations including the Carcinoid Cancer Foundation, the Carcinoid Cancer Awareness Network (CCAN), Caring for Carcinoid Foundation, the New Jersey Carcinoid Cancer Network, and NANETS (North American NeuroEndocrine Tumor Society) and 2 regional conferences, one in Texas and one in Indiana, were presented collaboratively by CCAN, InterScience Institute, and Ochsner Medical Center Kenner.

7)     Jan Naritomi-Hart selected as winner of the 2011 Warner Advocacy AwardJan Naritomi-Hart was selected as the winner of the 2011 Warner Advocacy Award. Presented by Novartis Oncology through Patient Advocacy and The NET AllianceTM, the award is given to the individual who best embodies the spirit, passion, and dedication of Monica Warner, a driving force behind the Carcinoid Cancer Foundation for two decades and an extraordinary advocate for carcinoid and neuroendocrine tumor survivors. A pancreatic NET patient, Jan has been vital in helping to raise awareness of NET cancer as a support group leader, supporting fundraising efforts of NET cancer organizations, and participating in conferences both helping to plan conferences and as a patient panel member.

8)     The Carcinoid Car made it to the final round as one of the top 10 finalists in the NASCAR Sponsafier competition. What is the Carcinoid Car?  It’s a specially designed, virtual Toyota Camry entered into the Sponsafier 4 competition by Danielle, daughter of a carcinoid patient, to help bring about greater awareness of carcinoid cancer.

Carcinoid car is a finalist in NASCAR Sponsifier competition

9)     Carcinoid cancer was the focus of the April calendar page for the 2011 Expressions of Hope calendar published by the ASCO (American Society of Clinical Oncology) Cancer Foundation. The calendar illustrations have been created by cancer patients, family members, friends, and caregivers to share their emotions through art and inspire hope in others.  The oil painting “The Song Bird Keeps Singing” is the work of Adria Di Maria, mother of carcinoid patient Marlena Johnston, who was diagnosed with carcinoid cancer in 2010.

10) Novartis Pharmaceuticals introduced iWalk for Carcinoid, a virtual walkathon that helps support carcinoid-related organizations. Participants are able to “walk” without leaving home, while learning more about carcinoid syndrome and raising money for a good cause.