New Jersey Carcinoid/Neuroendocrine Cancer Conference in October, Registration Closing Soon

Two of the country’s leading carcinoid and neuroendocrine cancer specialists, a cardiologist with expertise in carcinoid heart disease, a registered dietitian who works regularly with the NET community, and a nurse practitioner with extensive experience in neuroendocrine cancer will be the featured speakers for the New Jersey Carcinoid Cancer NETwork Conference, to be held on Saturday, October 3, 2015 at the Crowne Plaza in Edison, New JerseyCarcinoid/NETs:  Living Longer, Living Better will give participants the opportunity to learn more about significant developments regarding these rare diseases in the past two years; how carcinoid can affect one’s heart; updates in the diagnosis and management of neuroendocrine cancer; how patients can best navigate their disease; and the role of diet in the life of patients living with neuroendocrine tumors.

The day-long conference begins at 7:15 am with a deluxe continental breakfast, includes a sit-down lunch, 5 presentations, and concludes with a moderated question and answer period ending at 4:40 pm.

The guest speakers will be:

  • Dr. Jerome Zacks, “I Have a NET . . . Why Focus upon the Heart?  And What’s a Jerome S. Zacks, MDCardiologist Doing on My Team, Anyway!”

Dr. Zacks is a cardiologist with extensive experience in the nuances of Carcinoid/NETs patients. He founded and leads the Carcinoid Heart Center in New York City. He is an assistant Clinical Professor, Medicine, Cardiology at Mt. Sinai School of Medicine (NYC). Cardiology is often one of the “white elephant,” forgotten topics of NETs.

  • Dr. Thomas O’Dorisio, “Update in the Diagnosis and Management of Neuroendocrine Thomas O'Dorisio, MDCancer”

Dr. O’Dorisio is an endocrinologist at the University of Iowa who has been working with carcinoid/NETs for many years. He has authored countless papers on neuroendocrine cancer and lectured extensively on the subject. Some of his topic points are: Problems with NET Therapeutic Interventions, Pancreastatin & Neurokinin A as predictors,  and Lanreotide.

  • Nancy Roehnelt, “Navigating Your Disease with You at the Helm of the Ship”Nancy Roehnelt

Nancy Roehnelt, PhD, has been working with NETs patients for years and is very familiar with special problems they face in navigating the healthcare system. She has worked with carcinoid/NET specialist Dr. Larry Kvols (retired) and served as a professor at Rugers School of Medicine before returning to Florida to continue working at the H. Lee Moffitt Cancer Center in Tampa.

  • Leigh Anne Geisler Burns, “The Role of Diet in the Life of Patients Living with Leigh-Anne Geisler BurnsNeuroendocrine Tumors”

Ms. Burns has practiced medical nutritional therapy for more than 20 years.  She is a clinical nutritionist and a faculty member at the LSU Health School of Medicine in New Orleans. She is also the clinical lead for wellness and cancer screening at LSUHSCD and a member of the NETs multidisciplinary team at Ochsner Kenner.

  • Dr. Richard R.P. Warner, “Significant Developments in NETs in the Last Two Richard R.P. Warner, MD_2Years”

Dr. Warner is known as “the guru” of carcinoid/NETs, having devoted his life’s work to researching and treating these rare diseases.  He is a professor at the Mt. Sinai School of Medicine in New York City, Director of Mt. Sinai’s Center for Carcinoid and Neuroendocrine Tumors, and Medical Director of the Carcinoid Cancer Foundation.  Recognized nationally and internationally, Dr. Warner has developed and pioneered many treatments, while remaining on the cutting-edge in the field today.

The cost to attend the conference, including the continental breakfast, coffee breaks and sit-down lunch, is $30.00 per person and the fee for walk-ins, if space is available, is $50.00 per person at the door (cash or check).  The deadline for registering is September 12, 2015; late registration will be available space permitting.

Hotel accommodations are at the Crowne Plaza in Edison, New Jersey. For reservations, call the hotel at 732-287-3500 and ask for room reservations.

Crowne Plaza Hotel, Edison, NJ

The conference is made possible, in part, by a generous grant from Ipsen.

For further information, visit the New Jersey Carcinoid Cancer NETwork website, CLICK HERE.

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Smart Patients Carcinoid and Neuroendocrine Tumor Community — Join the Conversation

The Carcinoid Cancer Foundation is excited to announce a new online community for carcinoid and neuroendocrine tumor (NET) patients, their families and friends. We are partnering with Smart Patients to build this community and hope that combining CCF’s experience educating patients about carcinoid and NET cancers with Smart Patients’ experience with online peer support will result in more patients getting information they need even faster. Join Smart Patients, ask a question, and support others who can learn from you.

Smart Patients Carcinoid and Neuroendocrine Tumor Community

What kinds of issues are being addressed in the Smart Patients Carcinoid and Neuroendocrine Tumor Community? People are talking about what they wish they knew when they were first diagnosed, how to find a doctor who specializes in treating carcinoid/NETs, treatments and side effects, being a caregiver, and many other important topics about which members of the community can help each other.

Smart Patient quote

One of the unique aspects of Smart Patients is cross-community communication. For example, if a medication is taken by patients in more than one community, patients in different communities can learn about the experiences all patients are having with the medication. There are over 65 communities in Smart Patients, click here for a list.

Members of Smart Patients can also access an extensive database on clinical trials. It’s easy to follow any discussion of interest, as well as the newest information about clinical trials. Notifications of new postings will be sent directly to the email address with which you register. A video tutorial will help you get started with Smart Patients quickly.

Smart Patients was founded by Gilles Frydman (pictured below, right) and Roni Zeiger (pictured below, left). Gilles has been a pioneer of online health communities since he founded ACOR (the Association of Cancer Online Resources) in 1995. Roni is the former Chief Health Strategist at Google, is a part-time urgent care doctor, and has been building health software for the past 10 years.

Smart Patients Co-Founders, Roni Zeiger and Gilles Frydman

Sign up for the Smart Patients Carcinoid and Neuroendocrine Tumor Community today and join the conversation! 

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2nd Annual Tommyland Invitational Charity Golf Tournament, Utah

The 2nd Annual Tommyland Tourney, a charity golf tournament to benefit the Carcinoid Cancer Foundation, will be held on Sunday, September 13, 2015 at the Sun Hills Golf Course in Layton, Utah.  The tournament is being held in memory of Thomas Craig Patterson (pictured) who passed away after a long and courageous battle with carcinoid cancer.

Thomas Craig Patterson_2Guarantee your spot — the tournament is limited to the first 120 players.  Pre-payment is suggested and appreciated by the tournament committee.  The deadline for registration is Friday, September 4, 2015.  Lunch will be provided.

The sponsors of the event are NAPA Auto & Truck Parts, NAPA AutoCare Center, and CRUS Oil Inc.

Everyone is welcome — for those who are not golfers, you can help out with the fun events, support those whose lives have been touched by carcinoid cancer, and participate in a worthy cause.

Click here for a SIGN UP SHEET; click here for a SPONSORSHIP FORM.  For more information call Denis Johnson 801-541-4217, Vicky Donio 801-414-2936, Trace Kenny 801-940-0730, Brian Rodrick 801-541-9666, Michelle Patterson 801-721-6163, or Zach Patterson 801–644-9225.

The Carcinoid Cancer Foundation expresses its deepest appreciation to all who participated in, volunteered for and sponsored the 1st Annual Tommyland Tourney and to everyone continuing this wonderful support of CCF with the 2nd Annual Tommyland Tourney on September 13, 2015.



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September Luncheon with the Experts in New York City — Carcinoid and Neuroendocrine Tumor Patients Are Invited!

Carcinoid and neuroendocrine tumor (NET) patients are invited to join three medical experts for Lunch with the Experts in New York City on Sunday, September 27, 2015 at 12:30 pm. This special program was initiated and is sponsored by the Big Apple NETs support group, in collaboration with the Carcinoid Cancer Foundation. There is no charge for the luncheon thanks to the generous sponsorship of Lexicon Pharmaceuticals.

Big Apple NETsThis is a unique opportunity to hear from expert physicians in an informal setting on issues ranging from NET cancer treatments and surgery to follow-up testing and new developments.

Interested individuals must register by email or telephone on a first-come, first-served basis, with priority given to first-time attendees. A maximum of 25 participants can be accommodated.

Luncheon with the Experts on September 27, 2015 will feature (left to right) Dr. Richard R.P. Warner, Dr. Michail K.Shafir, and Dr. Lynn H. Ratner

Luncheon with the Experts on September 27, 2015 will feature (left to right) Dr. Richard R.P. Warner, Dr. Michail K. Shafir, and Dr. Lynn H. Ratner

The experts for the luncheon will be Dr. Richard R.P. Warner, world-renowned carcinoid/NET specialist, Director of the Center for Carcinoid and Neuroendocrine Tumors at Mount Sinai Hospital in New York City and Medical Director of the Carcinoid Cancer Foundation; Dr. Michail K. Shafir, Clinical Professor of Surgery and Surgical Oncology at Mount Sinai Hospital; and Dr. Lynn H. Ratner, Assistant Clinical Professor of Medicine, Hematology and Medical Oncology at Mount Sinai.

The event will be held in a private dining room at Dorrian’s Restaurant in Manhattan (1616 2nd Avenue, corner of 84th Street).

Please contact Emily Zuckerberg as soon as possible to make your reservations: or 917.689.1980 (no more than 2 people per indication of interest). If your plans change and you are unable to attend, please be sure to notify the Big Apple NETs to make room for someone on the waiting list.

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New Survey for the Carcinoid and Neuroendocrine Tumor Community

The Carcinoid Cancer Foundation is always looking at ways of improving content and services available to people living with carcinoid cancer and other neuroendocrine tumors and we are working with a pharmaceutical partner, Ipsen, to better understand what resources, information, and support you would like to see made available at each stage of your journey.

To that end we’d like to ask for your help. We’ve created a short questionnaire and would really appreciate it if you could take just a few minutes to complete our survey (it should take no longer than 10 minutes).

Survey, online, feedback

The survey will be online through August 26th.

Click here to take the survey:

Your answers will greatly help in the development of meaningful content, services, tools, and support so we hope you will help us shape that future.

Please know that your privacy is very important to us and no personally identifiable information will be shared with Ipsen.

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Lexicon’s Carcinoid Syndrome Treatment Meets Primary Endpoint in Phase III Clinical Trial

Lexicon Pharmaceuticals Inc. has announced that the pivotal phase III clinical trial, TELESTAR, of its oral drug candidate telotristat etiprate met the primary endpoint in treating cancer patients with carcinoid syndrome that is not adequately controlled by the current standard of care.

When adding telotristat etiprate at 250 mg and 500 mg doses to a somatostatin analog injection it significantly reduced the average number of daily bowel movements for patients with carcinoid syndrome compared to placebo over the 12-week study period. One of the most debilitating symptoms of carcinoid syndrome is diarrhea, which significantly impacts patients’ quality of life.

Lexicon received Fast Track designation and Orphan Drug status for telotristat etiprate from the FDA in 2008 and 2012, respectively. The company is working closely with the FDA to file their first new drug application (NDA). If approved, telotristat etiprate would become the first oral treatment successfully developed for carcinoid syndrome and the first addition to the standard of care in more than 16 years.

Carcinoid syndrome, a chronic condition caused by neuroendocrine tumors, is characterized by severe diarrhea and flushing. One of the long-term consequences of carcinoid syndrome is carcinoid heart disease. For patients with carcinoid syndrome, the concentration of blood serotonin correlates with the severity of the symptoms of the syndrome — flushing, diarrhea, and wheezing – and with the potential damage to the heart. When carcinoid has metastasized to the liver, the tumors there may produce a high concentration of serotonin which flows directly into the right side of the heart. Telotristat etiprate is an orally-delivered serotonin synthesis inhibitor (SSI) drug that acts to reduce serotonin levels.

Carcinoid Syndrome, Lexicon Pharmaceuticals, Telotristat Etiprate Clinical Trial

In a press release issued by the company, Lonnel Coats, Lexicon’s President and Chief Executive Officer, commented on how pleased Lexicon is with these top-line results.

“”Carcinoid syndrome is severely debilitating, preventing many patients from leading active and predictable lives, and unfortunately, a majority of patients will not be adequately controlled over time with the current standard of care. We are committed to working closely with the FDA to file our first new drug application (NDA) and to bring this innovative new treatment to patients whose lives are already impacted by the challenges of cancer.”

Matthew Kulke, MD_4According to principal investigator Matthew H. Kulke, MD (left), director, Program in Neuroendocrine and Carcinoid Tumors and Senior Physician at the Dana-Farber Cancer Institute in Massachusetts, “The TELESTAR results are promising, and the community of patients and caregivers who live and deal with carcinoid syndrome are excited about the prospect of a new treatment becoming available.”

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Call for Nominations: 6th Annual Warner Advocacy Award

Do you know someone who is a passionate advocate for patients with neuroendocrine tumors (NETs)? Novartis Oncology and The NET Alliance are searching for an outstanding NET patient advocate to recognize and honor with the 6th Annual Warner Advocacy Award.

The 2015 Warner Advocacy Award will be given to the individual who best embodies the spirit, passion, and dedication of the late Monica Warner, a driving force behind the Carcinoid Cancer Foundation for two decades and an extraordinary advocate for carcinoid and neuroendocrine tumor patients. Although she passed away in 2009, the spirit of her passion and hard work lives on.

Warner Advocacy Award_2Nominations are now being accepted and all submissions are due by 5 pm, Eastern Standard Time, on Thursday, August 20, 2015.

This year’s award process is different from previous years:

  • a simplification of requirement criteria for nominees
  • an independent committee of diverse professionals will vote for 3 finalists once all nominations are submitted.  The finalists will be announced on November 10 — Worldwide NET Cancer Awareness Day.
  • the public will then vote through a poll on the Warner Advocacy Award website to choose the 2015 winner
  • The winner of the 6th Annual Warner Advocacy Award will be announced in January 2016

The recipient will receive an individual award of recognition (non-monetary) and a donation of $10,000 from Novartis Oncology to an approved, patient-focused 501(c)(3) charitable organization suggested by the awardee.

Nominees may be patients, caregivers or advocates who work in the United States. While Novartis recognizes the contributions and dedication of health care professionals, this award is not intended to be given to a healthcare professional.Warner Advocacy Award 2015_Deadline for Submissions

Nominations will be reviewed for the following criteria:

  • Number of years as an advocate
  • Innovation of patient-focused project(s), examples of these projects include, but are not limited to brochures, awareness outreach, teleconferences, local/regional/national conferences, interactive web activity
  • 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)

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

Read more about the previous recipients of the Warner Advocacy Award:

Novartis Oncology and NET Alliance logos

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