Dr. Eric Liu discusses the Healing NET Foundation and the latest FDA approved drug therapy for Neuroendocrine Cancer during a recent media tour sponsored by Ipsen.
Read below for various news articles, interviews, documents and other resources regarding neuroendocrine cancer treatments and therapies, and the Healing NET Foundation.
Healing NET Summit 2017—Unmet Needs of the NET Patient Community
The second Healing NET International Summit brought 40 physicians and scientists, 12 nurses/nurse practitioners, 7 patient advocates, and various sponsors and exhibitors from the medical, pharmaceutical, and non-profit community together at a Beaver Creek “Summit” in Colorado February 21-23. (Click here for a list of participants)
The topic was Unmet Needs, which is an all too common topic when you are discussing a rare disease many physicians don’t understand; much less the patients seeking or receiving a diagnosis. When all of the participants were asked in advance to identify what they perceived as “unmet needs”, the list was a long one. Below are the categories identified by the group.
General sessions with all participants focused on candid discussion about which unmet needs were the top priority and what solutions might make a difference. Breakout sessions with the physicians ranged from discussing treatment pathways in real patient cases to debating the timing and dosimetry of PRRT. The nurse track focused on practical applications in the clinic to help hear and understand the patient’s real-life experience with carcinoid syndrome, and the patient advocacy representatives focused on ways they might work together to provide the best possible support to patients and caregivers.
A walk-through exhibit allowed attendees to HEAR patient voices describe their carcinoid syndrome experience in their own words and one dinner program was devoted to the clinical trial results of telotristat ethyl (now Xermelo for carcinoid syndrome approved by FDA just days after the Summit ended). A UCLA team presented the real-life experience of their PRRT clinical trial program with perspectives from the patient (skyped in) and from the physicians, nurses, and even the nuclear safety engineer. (Click here for the information on Xermelo and the investigational drug Lutathera now pending with FDA)
We look forward to providing more details of the Summit, and progress on distribution of results to the medical community over the next several months. Click here for a photo gallery.
We thank our Summit supporters: Advanced Accelerator Applications, Lexicon, Novartis, Ethicon, Halyard, Neuroendocrine Cancer Awareness Network, Angiodynamics, Biotheranostics, and supported in part by an educational grant from Ipsen.
Top Neuroendocrine Cancer Experts to Converge at Second Annual International Healing NET Foundation Summit February 21 - 23 in Beaver Creek, CO Summit to Host Inaugural Nursing Track and Patient Advocacy Panel for NET Cancers
BEAVER CREEK, CO - (Wednesday, February 15, 2017) – Top neuroendocrine cancer doctors, nurses, and specialists from around the world will attend the second annual International Healing NET Foundation Summit from February 21-23 in Beaver Creek, CO, it was announced today by Cindy Lovelace, executive director of the Healing NET Foundation (HNF). This marks the Summit’s second year in Beaver Creek, hosting more than 60 faculty members and addressing unmet needs of the neuroendocrine tumor (NET) community.
HNF Chief Medical Advisor Eric Liu, MD, will co-host the Summit, along with Allen Cohn, MD, and Charles Nutting, DO, who, along with the Summit’s chief physician advisors, will lead individual sessions related to neuroendocrine cancers. HNF will produce a post- conference academic review, along with multiple pieces of content to further educate on neuroendocrine cancers. An inaugural nursing track and patient advocacy panel will also be offered.
“We are thrilled to host our second annual Summit aimed to create high-level discussions on NET cancers, and focus on techniques and solutions to the unmet needs of patients,” said Lovelace. “Neuroendocrine tumors and neuroendocrine cancer can be one of the most easily treated cancers, and patients can be managed to live long and productive
lives. Outreach and education are critical, and we look forward to working with our colleagues to help demystify this often misdiagnosed, but treatable form of cancer.”
Dr. Liu noted, “Neuroendocrine tumors are a growing problem. Bringing the brightest, most experienced minds together to discuss the unmet needs of this disease and how to improve treatments will help elevate the awareness and standards of this unusual cancer.”
The second annual International HNF Summit is in partnership with The Lynx Group and the Association for Value Based-Cancer Care. Summit sponsors include: Novartis, Lexicon, Advanced Accelerator Applications, angiodynamics, Neuroendocrine Cancer Awareness Network (NCAN), Bio Theranostics, Halyard Health, and Ethicon. The Summit is supported in part by an educational grant from Ipsen.
NETs are an unusual set of malignancies that affect patients of all ages, races, and backgrounds. The tumors can be difficult to diagnose and can cause many unusual symptoms, which lead to improper diagnosis. Neuroendocrine cancer often traverses other multiple diseases requiring the skills of several specialty medical practitioners.
The Healing NET Foundation was founded by Lovelace and Liu with a common desire to bring neuroendocrine cancer from the obscurity of the “cancer that Steve Jobs had” to a level of understanding among medical professionals and the patients they serve that NETs can be very treatable forms of cancer, but first have to be spotted. Patients are sometimes referred to as “zebras,” as NET is considered a rare disease and no two patients are exactly alike.
The Healing NET Foundation
The Healing NET Foundation, a nonprofit organization focused on providing NET education and resources to the medical community, unites researchers and clinicians to examine how patients with NET are diagnosed and treated. To learn more about neuroendocrine tumors, please visit www.TheHealingNet.org.
The Lynx Group
The Lynx Group, one of the fastest growing medical education and communications companies, is a global strategic alliance of medical communications and education
companies. Through its unique business model, The Lynx Group strives to provide pivotal and contemporary information and education for all stakeholders in healthcare. The Lynx Group is the official association management and marketing company of the Academy of Oncology Nurse & Patient Navigators, Association for Value-Based Cancer Care, and the Association for Oncology Practice Management. Strategix, part of The Lynx Group umbrella is the in-house agency that leverages the unique access model provided by the broader organization to strategically and effectively deliver tactical execution on behalf of our clients. For more information visit: www.TheLynxGroup.com.
The Association for Value-Based Cancer Care (AVBCC)
The mission of AVBCC is to provide a forum for payers, providers, and the entire oncology team to consider and evaluate the cost-value issues particular to cancer treatments and its impact on patient care and outcomes. This unique focus is achieved through discussions and collaborations with those involved in evaluating therapies, treating patients, and paying for care. AVBCC is the fastest growing national specialty organization dedicated to improving the care of cancer patients and their quality of life by discussing, considering, and evaluating the value equation of how it relates to new and existing cancer therapies. This organization was established to provide a network for payers and oncology healthcare professionals to interact and network in order to promote optimal care for patients and their families. For more: www.AVBCCconline.org.
NETS at ASCO GI
HNF Executive Director Cindy Lovelace was excited to see the large attendance of physicians and other health care professionals during several NET cancer and carcinoid syndrome presentations at the Gastrointestinal Cancer Symposium in San Francisco presented by American Society of Clinical Oncology (ASCO). The Gastrointestinal (GI) Cancers Symposium is a specialized oncology event designed to provide scientific and educational content for members of the GI cancer care and research community. The symposium offered sessions on Imaging and Therapy of Neuroendocrine Tumors (NETSPOT, LU 177, and Telotristat), Practical Applications of Emerging Treatment Options, and the Treatment Algorithm for Carcinoid Syndrome, among others. HNF SAC member Dr. George Fisher, and HNF SAC and Board member Dr. Thomas O'Dorisio, were part of the sessions.
Check out these videos and pictures below that re-cap presentations specifically on NET Cancer at the ASCO GI 2017. Gallium 68 Scan Become Standard for Staging Neuroendocrine Tumors, Gallium 68 versus Low Volume PRRT, Should Gallium 68 be Used Instead of Ultra Scan, and Gallium 68 Provides Much More Data to Refine Treatment Options
First picture: Dr. Jonathan Strosberg, Moffitt Cancer Center, presents information on new Lu 177 Dotatate therapy pending approval by FDA, at ASCO GI 2017. Dr. Strosberg's NETTER III trial results on the therapy were recently published in New England Journal of Medicine. Second picture: Dr. Emily Bergsland, UCSF, is part of the panel discussion "Neuroendocrine Tumors--Practical Applications of Emerging Treatment Options" moderated by Dr. George Fisher, Stanford. This slide features the Telestar trial for a new carcinoid syndrome drug, Telotristat, currently pending FDA approval. Third picture: L-R NET survivor and Executive Director of Los Angeles Carcinoid Neuroendocrine Tumor Society Giovannna Imbesi and HNF Chief Medical Advisor Dr. Eric Liu listen to insights provided by NET survivor Richard "Spike" Redding, Board member of NorCal CarciNETS group. Last picture: President of NorCal CarciNETS and HNF Scientific Advisory member Josh Mailman, moderates an insightful panel on "Speaking Up: What stands in the way of patient-physician conversation about Neuroendocrine tumors and carcinoid syndrome" hosted by Lexicon Pharmaceuticals. Panel included two physicians and two NET survivors. L-R on panel Dr. George Fisher, Associate Professor Medical Oncology at Stanford and HNF Scientific Advisory member, Giovanna Imbesi, NET survivor and Executive Director of LACNETS, Dr. Eric Liu, HNF Chief Medical Advisor, and Richard "Spike" Redding, NET survivor and Board member of NorCal CarciNETS
NETTER -1 Phase III Trial results on Lutathera is published in New England Journal of Medicine
Saint-Genis-Pouilly, France – January 12, 2017 – Advanced Accelerator Applications S.A. (NASDAQ:AAAP) (“AAA” or “the Company”), an international specialist in Molecular Nuclear Medicine (MNM), today announced that the New England Journal of Medicine published the results of the NETTER-1 Phase III study evaluating efficacy and safety of Lutathera® (lutetium-177 dotatate), an investigational drug, in patients with advanced, progressive somatostatin receptor-positive midgut neuroendocrine tumors (“NETs”).
To read more click here
New Drug in Development Shows Improved Progression-Free Survival for Patients with Advanced Metastatic Midgut Neuroendocrine Tumors
A new therapy in development for the treatment of midgut neuroendocrine tumors, a rare type of cancer that occurs in the small intestine and colon, shows improved progression-free survival and response rates for patients with advanced disease. Results of the international phase 3 clinical trial of lutetium-177 (177Lu)-Dotatate compared to high-dose octreotide LAR were published in the Jan. 12 issue of the New England Journal of Medicine.
To read more click here
Nashville Cancer Survivor, Former Radio Exec and Co-Founder of Healing NET Foundation Cindy Lovelace Nominated for National “Hero of Hope” Patient Award
The Hero of Hope™ Award seeks to honor individuals who are living with cancer and who are inspiring others through their contributions to their communities, by serving as a role model to other cancer patients and survivors, or by exuding extraordinary spirit, grace and optimism in the face of adversity
Journal of Clinical Oncology
Detailed results from Lexicon’s pivotal Phase 3 TELESTAR clinical study of telotristat ethyl in patients with carcinoid syndrome. The article titled “Telotristat Ethyl, a Tryptophan Hydroxylase Inhibitor for the Treatment of Carcinoid Syndrome” is available online at the Journal of Clinical Oncology website at ascopubs.org/journal/jco.
TELESTAR was a global double-blind Phase 3 study which enrolled 135 patients from 12 countries with carcinoid syndrome whose symptoms were not adequately controlled on somatostatin analog therapy (SSA), the current standard of care. Data show that patients who added telotristat ethyl to SSA therapy at both the 250 mg and 500 mg doses experienced a statistically significant reduction from baseline compared to placebo in the average number of daily bowel movements over the 12-week study period (p<0.001), meeting the study’s primary endpoint. There was also a statistically significant reduction in the levels of urinary 5-hydroxyindole acetic acid (5-HIAA), the main metabolite of serotonin, from baseline to week 12 with a reduction of 40 mg/24 hours (250 mg arm) and 58 mg/24 hours (500 mg arm) versus an increase of 11 mg/24 hours in the placebo arm (p<0.001). Treatment with telotristat ethyl was generally well tolerated during the double-blind treatment period.
Eighty-five percent of the patients originally enrolled in TELESTAR opted to continue study participation, receiving treatment with 500 mg telotristat ethyl in a 36-week open-label extension (OLE) study. Results from the OLE showed sustained bowel movement responses to treatment and no additional safety signals. Additional results detailed in the publication showed evidence that telotristat ethyl may also improve stool consistency, reduce the urgency to defecate and reduce the use of rescue short-acting octreotide. The Lexicon clinical development team, headed by Chief Medical Officer Pablo Lapuerta, is “very encouraged about the potential benefits telotristat ethyl may bring in terms of bowel movement frequency and other measures of carcinoid syndrome severity.” Telotristat ethyl has received Fast Track and Orphan Drug designation from the U.S. Food and Drug Administration and has been granted priority review by the FDA with a Prescription Drug User Fee Act (PDUFA) target action date of February 28, 2017. If approved by the FDA, telotristat will be the first new treatment for carcinoid syndrome in more than ten years.
NEWS ABOUT ADVANCED ACCELERATOR APPLICATIONS
Advanced Accelerator Applications U.S. facility where Lutathera (PRRT) will be manufactured for clinical use in North America. FDA approval is anticipated by the end of the year. The facility is impressive from state of the art equipment to it's over the top standards and security, and the people are just as awesome. If you are confused about the current status of nuclear medicine scans and treatments for NET cancer in the U. S., please click through to the HNF Zebra Blog by Dr. Eric Liu about Netspot (Ga 68 diagnostic scan kit), which was just approved by FDA, and click on the link in the blog to better understand Lutathera. From Cindy Lovelace, HNF Exec Dir and PNET.
Hero of Hope 2016
CONQUER: The Patient Voice™ magazine in partnership with the Academy of Oncology of Nurse & Patient Navigators® (AONN) is proud to announce our very own Healing NET Foundation Executive Director and survivor, Cindy Lovelace as a 2016 finalist for Hero of Hope ™ Patient Award.
Cindy has shown extraordinary commitments to the NET community fundraising and hierarchical authority. Cindy Lovelace serves as a good example to other individuals with NET or any form of malignancy. Hero of Hope is sending the 6 leading nominees to the Seventh Annual AONN+ Conference in Las Vegas, Nevada. The winner of the Hero of Hope Award will be declared at the conference and get a plaque perceiving their commitments to the cancer community and also a gift of $1,000 made to their preferred philanthropy in their name.
Listen to Cindy's story
AUG. 13, 2016 - Advanced Accelerator Application (AAA) announced that the first administration of NETSPOT™, a product recently approved by the U.S. Food and Drug Administration (“FDA”) for the preparation of gallium Ga 68 dotatate for injection... Read more here.
JUNE 27, 2016 - The FDA grants Luthera Priority Review for Neuroendocrine Tumors... Get the full story here.
MAY 31, 2016 - Lexicon Announced FDA Priority Review of New Drug Application for Telotristat Etiprate for the Treatment of Carcinoid Syndrome. Click for the full story.
Green Light for Gallium Ga 68! The NET Community celebrates the FDA approval of NETSPOT. Click on the links to find out more!
NorCal CarciNET holds a patient education day on the Ga 68. Watch their website for video highlights (coming soon!)
LungNET patients heard from world expert Dr. Kjell Oberg and other NET physicians experts at a Denver conference co-sponsored by NCAN and HNF. Check it out: http://www.thehealingnet.org/events/