Clinical Trial for GI Carcinoid Patients Recruiting Through September

Gastrointestinal carcinoid patients who have tumors that either are not suitable for standard treatment or are not responding to standard treatment have the opportunity to enroll in a Phase I/II clinical trial conducted by Tekmira Pharmaceuticals. Enrollment is expected to complete by September 30. Centers in Arizona, Florida, Iowa, Massachusetts, Michigan, Minnesota, and Texas are participating in the study.

Tekmira Pharmaceuticals Clinical Trial for GI Carcinoid Patients

The study drug contains a type of man-made molecule related to DNA called siRNA (small interfering RNA). This siRNA is designed to reduce the levels of a protein called PLK1 inside tumor cells. Because the PLK1 protein is present at high levels in dividing cancer cells it is expected that by reducing PLK1 the study drug may be able to slow down or stop the cancer cells from multiplying.

Polo-like kinase 1 (PLK1)

Polo-like kinase 1

Participants in the study will undergo 6 cycles of investigational treatment, which are each one month long. A radiological assessment of participants’ tumors will take place at the end of the second month to determine if the cancer is stable, responding to treatment, or growing.

The participating centers are:

Scottsdale Healthcare, Scottsdale, Arizona
Contact Joyce Schafer ▪ 480-323-1339                                                               

Mayo Clinic, Scottsdale, Arizona
Mayo Clinic, Rochester, Minnesota                                                                                                                                 Contact: Clinical Trials Office ▪ 507-538-7623

University of Iowa, Holden Cancer Center, Iowa
Contact Julie Schlabaugh ▪ 319-356-4797

Moffitt Cancer Center, Tampa, Florida
Contact Helen Jump ▪ 813-745-4834                                                     

University of Michigan Comprehensive Cancer Center, Michigan
Contact:Julio Garcia-Castro ▪ 734-647-9437                                        

Dana Farber Cancer Institute, Boston, Massachusetts
Contact: Bon Lam ▪ 617-632-5261

Westchase Oncology Center, Houston, Texas
Contact: Dr. Mohammad Ali Hamidi ▪ 713-341-3204                     

For more information about the study, including eligibility requirements, click here:  or call Tekmira toll-free at 1-844-419-3258. To get information regarding reimbursement for lodging, meals and the available travel stipend please contact the treating center nearest you.

To learn more about Tekmira Pharmaceuticals, visit




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WEGO Health Builds Online Carcinoid Community

You can make a difference! To learn more about the needs of the carcinoid patient community, WEGO Health is conducting a survey and would appreciate your input.

WEGO Health

To reach out to the carcinoid community, WEGO Health has created a survey to learn more about how people use health communities in their health decisions, share information, contribute to health communities, and use social media for health information and communication.

Online health communities continue to grow, providing both health information and social support. WEGO Health is dedicated to empowering patients by providing access to information that can change their relationship with their health forever – for the better. The WEGO Health Sharing Hubs offer a collection of videos and resources that can help share information with patients in a variety of health communities.

Please take the survey today: Thank you!!

Survey, Online


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Carcinoid Cancer Foundation Awards Grant to Stanford University

The Carcinoid Cancer Foundation in White Plains, New York has awarded a grant of more than $65,000.00 to Stanford University in California to expand access to its Gallium-68 (Ga-68) DOTA-TATE PET/CT program for carcinoid and neuroendocrine tumor (NET) patients with somatostatin receptor positive tumors.

Andrei Iagaru, MD

Andrei Iagaru, MD

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. “We are extremely grateful to the Carcinoid Cancer Foundation for this very generous grant,” said Dr. Iagaru. “With these funds we will be able to offer additional patients with no insurance approval access to the study at no charge.”

Keith Warner, Chief Executive Officer of the Carcinoid Cancer Foundation, said support of the Stanford clinical study was made possible by “a private donor who contributed these funds with a request that they be directed to clinical research of Gallium-68 imaging and related studies on the West Coast. We believe this research can be of enormous benefit to the carcinoid/NET community, helping to improve quality of life and length of life for NET patients.”

Used in Europe for more than a decade, the Ga-68 labeled peptides (DOTA-TATE, DOTA-TOC, DOTA-NOC) PET/CT scan is also available in Asia, Australia, Latin America, and India. In the United States, it is only available in clinical studies at the present time. The Ga-68 labeled peptides PET/CT scan is a type of PET scan  based on similar technology to Octreoscan®. PET imaging using the Ga-68 labeled compound DOTA-TATE offers higher resolution and sensitivity than Octreoscan®, at a lower cost, and with improved convenience for patients. An important benefit of the Ga-68 DOTA-TATE scan is that it can be more effective at detecting smaller tumors and metastases because it binds very strongly to the SST2 somatostatin receptor of the neuroendocrine tumor cells. According to Dr. Iagaru, the Ga-68 DOTA-TATE scan is used to evaluate the extent of a patient’s disease and to monitor the effect of treatments.

Patient scanned with Gallium-68 DOTATATE PET/CT scan and Octreoscan

Because more than 50% of neuroendocrine tumor (NET) patients do not get a proper diagnosis until the disease has metastasized, “accurately staging and fully treating the disease at the earliest time possible will achieve the best outcome,” notes Dr. Iagaru. “Imaging is a critical element of NET workup.”

Stanford University and UCLA were the first medical facilities on the West Coast to offer the Ga-68 DOTA-TATE PET/CT study and 37 patients have participated at Stanford University since the study began enrolling participants in January 2014. Dr. Iagaru and his colleagues plan to enroll 200 patients during the 5-year period of this expanded access program (EAP).

According to the website, expanded access is “a process regulated by the Food and Drug Administration (FDA) that allows manufacturers to provide investigational new drugs to patients with serious diseases or conditions who cannot participate in a clinical trial.”

Preliminary results of the Stanford study have demonstrated that with new information from the scan physicians have changed the management of 60-70% of the patients participating in the EAP.

The EAP at Stanford also marks a collaborative effort with the Neuroendocrine Center at Vanderbilt University in Nashville, Tennessee. Vanderbilt was the first US facility to offer the Ga-68 DOTA-TATE scan in clinical trial and by sharing their protocol and results with Stanford, it enabled the physicians and researchers at Stanford to get approval for the EAP more quickly, which also saved money. The NET team at Vanderbilt was the first to report measured human dosimetry of the somatostatin analog, Ga-68 DOTA-TATE, in peer-reviewed literature. Radiation dosimetry is the calculation and assessment of the radiation dose received by the human body. Dr. Iagaru said that Stanford also plans to share anonymized data from the clinical study with the Clinical Trials Network at the Society of Nuclear Medicine and Molecular Imaging (SNMMI).

It is the goal of Dr. Iagaru and his colleagues engaged in the Ga-68 DOTA-TATE PET/CT EAP to improve the care of carcinoid/neuroendocrine tumor patients. They also plan to “accrue data for the U.S. Food and Drug Administration (FDA) that will demonstrate the safety, effectiveness and superiority of this scan over conventional Octreoscan® that will ultimately support the widespread adoption of this powerful and superior imaging technique throughout the US for patients with NET.”

Who is eligible for the clinical trial? Study participants include patients who have been diagnosed with a neuroendocrine tumor by biopsy and those whose physicians have a strong suspicion of a neuroendocrine tumor with previous imaging tests. Patients who are interested in participating in the study at Stanford University should contact Euodia Jonathan, 650-723-7419, or Krithika Rupnarayan, 650-725-4712,

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North Carolina Golf Tournament Raises Awareness of Carcinoid Cancer and Funds for the Carcinoid Cancer Foundation

Larry Sanders, Plant Engineer at Arclin USA in Moncure, North Carolina, and his colleagues held the Arclin’s Men and Women’s Golf Tournament on May 24, 2014 to express appreciation for those who work at the plant and for Arclin’s clients and to raise awareness of carcinoid cancer and funds in support of the work of the Carcinoid Cancer Foundation.

Debbie and Larry Sanders Help to Raise Awareness of Carcinoid Cancer

Debbie and Larry Sanders

Because of the large participation and response to the event since its inception four years ago, Mr. Sanders decided to associate the Golf Tournament with a cause. He selected Carcinoid Cancer in honor of his wife Debbie, who was diagnosed with this rare disease in 2006. The Carcinoid Cancer Foundation was chosen as the recipient of donations from both the 2013 and 2014 Golf Tournaments in support of the foundation’s mission to increase awareness and educate the general public and healthcare professionals about carcinoid and related neuroendocrine tumors (NETs), to support carcinoid/NET cancer patients and their loved ones, and to serve as patient advocates.

Mrs. Sanders describes the May 24th tournament as a “fun-filled day of golf, hamburgers, hot dogs, door prizes, and a raffle” with 17 teams participating. This year’s event raised over $6,000 for the Carcinoid Cancer Foundation (CCF). “None of this would have been possible without our wonderful team of volunteers, especially Edie and Joe Ferriola,” says Mrs. Sanders. “We would also like to thank Arclin’s vendors, local companies, and individuals for their amazing generosity — donating prizes, sponsoring golf holes, and supporting CCF.”

Arclin and the Carcinoid Cancer Foundation gratefully recognize the following donors:

  • Hunt Electric, raffle prize of a men’s and women’s bicycle set
  • FCX Performance, raffle prize $250.00 gift card
  • Bull Dog Supply, raffle prize iPad Mini

Golf hole sponsors:

  • A&D Environmental
  • Carolina Custom Kitchen and Bath
  • Caroteck
  • Cyrco – Cooling Tower Specialist
  • D&S
  • EMSS
  • Liquid Handling
  • Porter Scales
  • S&M Electric
  • Tencarva

Sponsors and prizes for Longest Drive and Closest to the Pin:

  • AAA Scale
  • Machine Welding

The Carcinoid Cancer Foundation would like to express its deepest appreciation to Larry and Debbie Sanders, the employees and clients of Arclin USA, and the event sponsors and donors for your generosity and support!!

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Zebra Talk — A Handbook for Newly Diagnosed Carcinoid & Neuroendocrine Tumor Patients and Their Primary Care Physicians

There’s a terrific new resource for carcinoid and neuroendocrine tumor patients and their primary care physicians entitled Zebra Talk. According to Suzi Garber of Bucks County, Pennsylvania, editor, 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.” Suzi describes the handbook as a “virtual bridge that will allow patients to grow a relationship and inspire worthwhile communications between a patient and their primary care medical professional, their support team, and close friends.”

Zebra Talk Handbook for Newly Diagnosed Carcinoid and Neuroendocrine Cancer Patients and Their Primary Care Physicians

What do you do first after receiving a diagnosis of a NET? Zebra Talk walks you through the steps.

The handbook outlines the different types of NETs including gastrointestinal carcinoids, bronchial (lung) carcinoids, pancreatic neuroendocrine tumors (pNETs), paragangliomas and pheochromocytomas, and Merkel cell carcinoma (skin).

Information about the blood tests for NETs, tumor classifications, scans and other imaging such as MRI (magnetic resonance imaging) and capsule endoscopy is also included in the handbook.

Zebra Talk Handbook, What Are Neuroendocrine Tumors

What are the various therapies for NET patients? Different types of surgery and liver-directed therapies are categorized. The guide includes descriptions of somatostatin analogs, chemotherapy, investigative agents, targeted therapies and anti-tumor and anti-angiogenic agents.

Carcinoid heart disease, bowel obstruction, and carcinoid crisis are all possible complications of carcinoid syndrome. Zebra Talk describes each of these and shares important information about the use of octreotide during surgery to reduce the risk of carcinoid crisis.

A section of Helpful Hints is an excellent guide for patients who are new to the journey of living with carcinoid or other NETs. Every medical vocabulary word within any paragraph in the handbook includes a definition in parentheses for a quick understanding of what is being said.

Internet Resource Links enable patients to easily access information about locating carcinoid/NET specialists, learning about clinical trials, nutrition, watching videos on carcinoid/NETs, attending conferences and events for the NET community, molecular profiling, clinical/medical papers, and much more.

The handbook also features a NET Glossary, Useful Facts to Know about Testing, and a chart of Gallium-68 Dotatate PET/CT U.S. clinical trial sites.

Suzi Garber has been living with a NET diagnosis since 2006, having had surgery to Suzi Garber, editor of Zebra Talkremove her primary mid-gut carcinoid tumor 7 years ago. She is the founder/support group leader of Philly NETs, a hospital to community liaison, and patient advocate. She was the only patient on the team that created the neuroendocrine clinic at the University of Pennsylvania’s Abramson Cancer Center, received the Advocate of the Year Award in 2011 from the University of Pennsylvania, and remains as liaison to the community at large for the NET program. Suzi says she “has been misdiagnosed, tardily diagnosed, treated for the wrong disease, and turned down for surgery five times until she heard a yes.” She recently participated in the National Institutes of Health (NIH) Gallium-68 clinical trial. To read more about her experience at the NIH, click here.

Download a copy of Zebra Talk  by CLICKING HERE.Zebras and elephant

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Call for Nominations: 2014 Warner Advocacy Award

Do you know someone who is a passionate advocate for patients with neuroendocrine tumors (NETs)? The NET Alliance™ and Novartis Oncology have announced the 2014 Warner Advocacy Award, named in honor of the late Monica Warner, a driving force behind the Carcinoid Cancer Foundation for two decades and extraordinary advocate for carcinoid and NET patients. The 2014 Warner Advocacy Award will be given to the individual who best embodies the spirit, passion, dedication, and leadership of Monica Warner. Mrs. Warner was a strong voice for patients and, although she passed away in 2009, the spirit of her commitment and hard work lives on.

Warner Advocacy Award 2014:  Call for Nominations

Nominations are now being accepted and all submissions are due by 5 pm (Eastern Standard Time) on Friday, June 13, 2014.

The winner of this year’s award will be announced in September. The recipient will receive an individual award of recognition (non-monetary). Novartis Oncology will present a $10,000 donation to an approved 501(c)(3) charitable organization of the winner’s choice. Institutions and non-501(c)(3) organizations are not eligible to receive the award.

Warner Advocacy Award
Nominees may be patients, caregivers, or advocates who work in the United States.

Although Novartis recognizes the contributions and dedication of healthcare professionals, this award is not intended to be given to a healthcare professional.

Nominations will be reviewed for the following criteria:

  • Number of years as an advocate
  • Number of patients assisted
  • Innovation of patient-focused project(s)                                                                     (Examples of projects include, but are not limited to: brochures, awareness outreach, teleconferences, one-on-one counseling, local/regional/national/international conferences, interactive Web activity)
  • Area of outreach (local, regional, national, international)
  • Facilitation of positive change
  • Number of educational programs hosted yearly                                                       (Examples of programs include, but are not limited to: webcasts, phone conferences,     face-to-face meetings)
  • Frequency of interactions with patients (monthly, weekly, several times a week)
  • Evidence of collaboration with group leaders (local, regional, national, international)
  • Previous Warner Award winners from the same advocacy group

Visit the Warner Advocacy Award website at and fill out the online nomination form.

Read more about previous recipients of the Warner Advocacy Award (click on each person’s name): Jim Weiveris 2013 , Susan Anderson 2012, Jan Naritomi-Hart 2011, and Maryann Wahmann 2010.

Warner Advocacy Award

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NET Alliance Issues New E-Book on Neuroendocrine Cancer

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.

“Twenty-five years ago when I began to specialize in neuroendocrine cancer therapy, we Larry K. Kvols, MDhad very limited options for the treatment of patients with neuroendocrine cancers,” says carcinoid/NET specialist Dr. Larry Kvols (pictured). “The last few years we have seen a real sea-change of new treatments that are available for these patients.”

New treatments, widely available treatment guidelines, and better classification of neuroendocrine cancers all can have a significant impact on patients’ lives and the clinical practice of doctors who are treating carcinoid/NET patients.

Dr. Frederico Costa talks about the need for physicians to consider NET cancer when patients present with symptoms that could overlap with other diseases. Oncology nurse Nancy Roehnelt stresses the importance of understanding the uniqueness of each NET patient’s case.

NET centers which offer a multidisciplinary approach to patient care are important from both the physician’s point of view and the patient’s. These centers offer “a collaborative approach that is proven to raise the standard of care for patients.”

Initially, the NET journey might be a lonely one. “As a NET patient you do feel alone in this world, nobody around you has the same diagnosis.” Support groups, NET organizations, and carcinoid/NET conferences help change that journey into one of empowerment. “One of the best ways to fight carcinoid cancer,” says a patient, “is knowledge.”

NETrospectives, CCF

Listen to NET advocates from around the world as they talk about their views on advances in NET cancer ranging from access to information on the Internet to growth of support groups, social media connecting the NET community to the zebra as the symbol of NETs, and Worldwide NET Cancer Awareness Day joining patients globally every November 10th.

NETrospectives, Bulgaria

View the e-book NETrospectives here: Additional information from the NET Alliance includes Living with NETs, Expert Opinions, NET Support, NET Community Resources, patient stories, and a video library. READ MORE 

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