10 Highlights of the Year 2014 for the Carcinoid and Neuroendocrine Tumor Community

As the Carcinoid Cancer Foundation looks back on the year 2014, we reached out to physicians, patients, support group leaders, listserv managers, patient advocates, and business colleagues to see what they thought were among the highlights of the past year. There continue to be many significant advances and milestones in the carcinoid and neuroendocrine tumor (NET) community. Here are 10 of the year’s highlights as shared with us:

1) Gallium 68 Clinical Studies

There was great excitement in the NET community as clinical studies with the Gallium-68 (Ga-68) DOTA-TATE PET/CT scan opened in California and at the NIH in Maryland, joining the ongoing Gallium-68 studies in Iowa and Tennessee, with the study still to come in Louisiana. The Carcinoid Cancer Foundation awarded grants of more than $90,000.00 to Stanford University in California to expand access to its Gallium-68 DOTA-TATE PET/CT program for NET patients with somatostatin receptor positive tumors. Andrei Iagaru, MD, Associate Professor of Radiology and Co-Chief of the Division of Nuclear Medicine and Molecular Imaging at Stanford University Medical Center, is the Principal Investigator of the study. “With these funds we will be able to offer additional patients with no insurance approval access to the study at no charge,” said Dr. Iagaru.

Gallium-68 DOTA-TATE chemical structure

2) PRRT Clinical Trials

The ongoing PRRT clinical trial, the 177Lu-DOTAo-Tyr3-Octreotate Phase IIILu-177 clinical trial also known as NETTER-1, continues to afford patients the opportunity for a new treatment option. This international study is a multicenter randomized clinical trial in patients with inoperable progressive midgut carcinoid. The NETTER-1 study will evaluate the efficacy and safety of Lutathera® compared to high dose Octreotide LAR in patients with inoperable, progressive, somatostatin receptor positive, midgut carcinoid tumors. The primary objective of the trial is the assessment of Progression-Free Survival (PFS).   For more information about the trial, click here.

3) FDA Approves Lanreotide for Gastroenteropancreatic Neureoendocrine Tumors

On December 16, 2014 the US Food and Drug Administration (FDA) approved “lanreotide (Somatuline Depot Injection, Ipsen Pharma) for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival.” Cynthia Schwalm, President and CEO of Ipsen Biopharmaceuticals, Inc., said, “Somatuline® is the first and only treatment with a statistically significant progression-free survival benefit approved by the FDA for patients as an antitumor therapy in the treatment of gastrointestinal and pancreatic neuroendocrine tumors.” Read more here

US FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors

4) Bringing the Promising Field of Immunotherapy to NETs

A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. The Caring for Carcinoid Foundation (CFCF) launched an initiative to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancers. Specifically the initiative will fund projects in 3 major areas: 1) immunotherapy expert Dr. Carl June and NET researcher Dr. Xianxin Hua (pictured below left and center), both from the University of Pennsylvania, will modify CAR T-cells to target and kill neuroendocrine tumor cells, 2) Dr. Pamela Kunz (pictured below) from Stanford University will lead a multidisciplinary team conducting a clinical trial of 2 immunotherapy therapies in pancreatic and carcinoid NET patients; and 3) a study of the immune characteristics of NETs to guide CFCF’s testing of immunotherapy therapies; immunology experts will be awarded grants to study and profile NET tumors. A $1 million grant from the TripAdvisor Charitable Foundation is supporting half of the projected costs of the initial projects in this initiative.

Immunotherapy Researchers on Neuroendocrine Tumors

5) First Ever Global NET Patient Survey

The goal of the Global NET Patient Survey, a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis Oncology, was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level. Nearly 2,000 patients from 12 countries completed the survey between February 2014 and May 31, 2014. The data are being analyzed at the global, regional and country levels. The survey gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels. The quality-of-life results are the first data to be released and additional findings will follow. Read more here.

Global NET Patient Survey

6) NET Conferences

A highlight of 2014 was the national NET patient conference, sponsored by the Neuroendocrine Cancer Awareness Network (formerly Carcinoid Cancer Awareness Network), which attracted over 500 patients, caregivers, physicians, and industry colleagues to Charlotte, North Carolina. Topics ranged from An Introduction to the Basics of NETs to and How NETs Affect Your Heart to An Update on Multi Visceral Organ Transplants and The Benefit of Multidisciplinary Teams Treating NETs. Support group leaders from around the country connected while there was a special half day session on Lungnoids and DIPNECH. Join us in extending our appreciation to Maryann and Bob Wahmann for their commitment to ensuring that this important conference happens every other year.

Conferences from coast to coast and around the world were held beginning in January with the NorCal CarciNET 2014 Patient Conference in California, the Neuroendocrine Mid-Winter Conference in Colorado (February), the New England Carcinoid Connection Carcinoid and Neuroendocrine Tumor Conference in Massachusetts (May) and the PNW support group’s first NET Patient Education Day in the State of Washington (October).

The Caring for Carcinoid Foundation sponsored patient education conferences in Los Angeles, California (June) and in Pennsylvania in October in conjunction with the University of Pennsylvania’s Abramson Cancer Center.

North American Neuroendocrine Tumor Society (NANETS)NANETS, the North American Neuroendocrine Tumor Society, the organization of carcinoid/NET cancer medical/healthcare professionals, held its 7th Annual Conference in Nashville, Tennessee in October and presented regional conferences in Michigan (May), California (November), Florida (November), and Colorado (December).

Multiple Endocrine Neoplasia (MEN) was the focus of seminars and conferences, nationally and internationally. American Multiple Endocrine Neoplasia Support sponsored patient and family seminars in Illinois (March) and Minnesota (October). For the first time AMEND USA held a day-long patient conference, which took place in Florida (September). World MEN 2014, the 14th International Workshop on Multiple Endocrine Neoplasia and Other Rare Endocrine Tumors, was held in Vienna, Austria in September.

Internationally, the European Neuroendocrine Tumour Society (ENETS) held its 11th annual conference in Barcelona, Spain in March; the International Symposium on Pheochromocytoma and Paraganglioma (ISP) 2014, was held in Kyoto, Japan in September; the 2nd Annual Conference of the Asia Pacific Neuroendocrine Tumour Society (APNETS) took place in India in November; and the UKI NETS (UK and Ireland Neuroendocrine Tumour Society) 12th National Conference was in London in December.

7) NET Cancer Day, November 10, 2014

The theme of the fifth Worldwide NET Cancer Awareness Day was “Time to Diagnosis,” focusing on one of the most common issues facing carcinoid and other neuroendocrine cancer patients. The International Neuroendocrine Cancer Alliance (INCA), sponsor of NET Cancer Day, asked patients to submit photo selfies in which they held a placard showing how many years it took be diagnosed, their misdiagnosis if any, and their actual diagnosis. From New Zealand and Singapore to the United Kingdom and the United States selfies showed that a proper diagnosis took everywhere from 19 years to 6 months. Misdiagnoses included asthma, IBS, pre-diabetes, ulcers, Crohn’s disease, preeclampsia, pancreatic cyst, and anxiety.

With special thanks to the sponsors of INCA and supporters of NET Cancer Day: Novartis Oncology, founding sponsor; Ipsen; and Lexicon Pharmaceuticals.

49 US Governors Recognized the Importance of Awareness and Early Detection for Neuroendocrine Cancer Patients

The Carcinoid Cancer Foundation contacted every Governor in the United States seeking proclamations, resolutions and letters of support for NET Cancer Awareness Day 2014. A record forty-nine (49) states recognized the importance of early detection and proper treatment leading to improved outcomes and a better quality of life for carcinoid/NET (neuroendocrine tumor) cancer patients!!

8) OncLive Features Series on Pancreatic Neuroendocrine Tumors

An 11-episode series on pancreatic neuroendocrine tumors, pNETs, began in February on OncLive-TV. The series includes episodes on diagnostic challenges, pathological classification of NETs, treatment of NET liver metastases, the role of somatostatin analogues for patients with pNETs, the RADIANT-3 clinical trial, and effective sequencing of treatments for pNETs. The expert panelists are: Matthew H. Kulke, MD, moderator; Rodney F. Pommier, MD; Diane Reidy-Lagunes, MD; Jonathan Strosberg, MD; and James Yao, MD.

9) Warner Advocacy Award

Grace Goldstein, Chief Operating Officer of the Carcinoid Cancer Foundation and the first President of the International Neuroendocrine Cancer Alliance (INCA), was selected as the 2014 of the Warner Advocacy Award. Established by Novartis Oncology in 2009 to commemorate the life and work of the late Monica Warner, the Warner Advocacy Award is presented annually to honor the patient, advocate, or caregiver who most embodies the passion, dedication, leadership, and spirit with which Monica Warner assisted patients, caregivers, and families affected by NETs. Read more here.  Grace is honored to be counted as a leading advocate along with past winners of the award: Maryann Wahmann, Jan Naritomi-Hart, Susan Anderson, and Jim Weiveris.

10) NETs in the News and on Television

The New York Daily News had a feature article in April, Daily Checkup: Carcinoid tumors Have a Variety of Symptoms, spotlighting Celia Divino, MD, Chief of the Division of General Surgery at Mt. Sinai Hospital in New York City and a team member of Mt. Sinai’s Center for Carcinoid and Neuroendocrine Tumors.

BYU men’s basketball coach Dave Rose and Merlynn Densley, leader of the Utah carcinoid/NETs support group were featured on KUTV. Thanks so much for raising awareness on NET Cancer Day! Watch the video here.

Stephanie Madsen from Littleton, Colorado, was diagnosed with large cell neuroendocrine carcinoma of the cervix, an extremely rare and aggressive form of cancer. A three-time cancer survivor she entered and won the CoverGirl Bombshell contest and received a VIP trip to the Ellen TV-show.

NET Survivor Stephanie Madsen Chosen as Cover Girl Bombshell Winner Appears on the Ellen TV Show

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We would also like to recognize the following as significant for the carcinoid/NET community in the year 2014:

Edward Wolin, MD joins Markey Cancer Center as Director of the Carcinoid and Neuroendocrine Tumor ProgramDr. Edward M. Wolin (left) was named Director of the Markey Cancer Center’s Carcinoid and Neuroendocrine Tumor Program at the University of Kentucky.

Eugene A. Woltering, MD, The James D. Rives Professor of Surgery and Neuroscience and Director of Surgical Research at LSU Health Sciences Center/Ochsner in Kenner, Louisiana, has been selected to serve as Chair of the Neuroendocrine Tumors Expert Panel for the American Joint Committee on Cancer’s (AJCC) AJCC Cancer Staging System, 8th Edition.

Emily Bergsland, MD, a NET/gastrointestinal oncology specialist at the UCSF Helen Diller Comprehensive Cancer Center in California, has been named Vice-Chair of the Neuroendocrine Tumors panel.

Zebra Talk is a terrific new resource for carcinoid and neuroendocrine tumor patientsZebra Talk Handbook for Newly Diagnosed Carcinoid and Neuroendocrine Cancer Patients and Their Primary Care Physicians and their primary care physicians. According to editor Suzi Garber, 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.” Click here to read more and download the handbook,

• “Hush” by Giovanna Imbesi was selected as one of 12 winners in the Songsforlife.org contest! It will be released on CD in February, 2015, with proceeds going to cancer research. This project is the first crowd-sourced CD for cancer research, “Finding Cures One Note at a Time.” Giovanna is the support group leader for LACNETS, the carcinoid/NET group in Los Angeles, California. Listen to her song “Hush,” featuring Toni Peete, here.

NETrospectives, a new e-book produced by The NET Alliance, is “a journey through the past and a vision for the future of neuroendocrine cancer.” The e-book presents patients, patient advocates, and physicians talking about the diagnoses of these rare diseases, imaging techniques and treatment options, raising the standard of care, and connecting with others in the carcinoid/neuroendocrine tumor (NET) community.

Jan Naritomi-Hart and Pascal Louw• Sadly, the passing of two key support and patient/patient advocate organizations leaders (pictured above) in the United States and France. Jan Naritomi-Hart, winner of the Warner Advocacy Award in 2011, played a key role in 2 southern California NET patient support groups, the Support Education Awareness 4 (SEA4) Carcinoid and the local San Diego support group she started herself. Pascal Louw served as President of the French organization APTED, L’Association des Patients porteurs de Tumeurs Endocrines Diverses, and was APTED’s representative on the International Neuroendocrine Cancer Alliance, INCA.

From all of us at the Carcinoid Cancer Foundation, we wish you and your families a wonderful holiday season and a very Happy New Year

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