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: emily@bigapplenets.org 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: https://www.surveymonkey.com/r/X8ZKTGZ

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 www.warneradvocacyaward.com 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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In Memoriam: Edda Gomez-Panzani, MD

It is with deep sorrow that we learned of the passing of Edda Gomez-Panzani, MD on June 30, 2015. The NorCal CarciNET Community shared a tribute to Edda who “was instrumental in gaining FDA approval for Somatuline (lanreotide) for NETs patients in December 2014.” This wonderful picture of Edda was taken by her dear friend, the late Monica Warner.

In Memoriam: Edda Gomez-Panzani, MD

Dr. Gomez-Panzani, Vice President of Research & Scientific Affairs for Ipsen Biopharmaceuticals, died from cancer at her home in California, surrounded by loved ones. Click here to read her obituary.

The neuroendocrine tumor (NET) community has lost a very special friend and advocate. All of us at the Carcinoid Cancer Foundation extend our deepest sympathies to Edda’s family, friends, and colleagues.

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Did I Take It . . . or Didn’t I?

When it comes to taking pills, drops, injections, and other forms of medication, about one third to one half of U.S. patients do not adhere to prescribed medication regimens (Osterberg and Blaschke, Adherence to Medication, New England Journal of Medicine, August 2005). There are many reasons for this ranging from difficulties in the timing of dosages to cost to potential side effects to feeling better and not completing the full course of the medication. One feature of the new Carcinoid NETs app (read more and download the app) is a Medication Tracker. It helps you track all of your medications, set reminders, record which medications were taken and when, and note if they were skipped and why.

App, CCF_Responsive mock

“If we could develop something to get people to take the medicine we prescribe them, it would have a greater benefit to society than any new drug we could develop,” says Silja Chouquet, who explores in “DE-scribe Medecines,” a TED-X talk, why we don’t take our medication and what we should do about it.

Silja Chouquet is the owner and CEO of whydot GmbH, an agency specializing in social media consulting, coaching and training. Her fields of expertise are the creation of patient-focused social media communications and marketing campaigns. She is also an entrepreneur at Ubercurious, a social media research start-up, which generates insights by combining traditional research approaches with novel data visualization techniques. Silja has worked in different positions at two multi-national pharmaceutical companies.

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