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Transforming Awareness Into Action

November 18, 2019

by Ms. Anne Dabbs

“Someone is Sitting in the Shade Today Because Someone Planted a Tree a Long Time Ago.”
— Warren Buffet

Dr. Phil McGraw said, “Awareness without action is worthless.” His rapid fire, problem solving tactics are not for the soft spoken, but his awareness quote speaks directly to our Neuroendocrine Cancer Community.

Every year our social media forums and support groups gear up for our NETS AWARENESS campaigns for November 10 with an enthusiasm normally reserved for sporting events. We plan walks, galas, and displays. We wear our Zebra clothing and look for symbolic home decor. The Internet is flooded with Zebra photos and celebratory greetings. And, on November 11, too many of us release a sign of relief and pack away all of our black and white until November next year.

Fortunately, a short four weeks later, we are reminded of another opportunity to make our voices heard. Falling on December 3 this year, GIVING TUESDAY is an international day of charitable giving. Its participation has grown annually since its inception in 2012. Communities have embraced this concept of a “Global Giving Moment” with generosity ranging from the simple and singular to innovative collaboration across great distances.

We, here at the NEUROENDOCRINE CANCER AWARENESS NETWORK, would encourage you to participate on GIVING TUESDAY to help our organization continue to build up our NETS CANCER COMMUNITY. A simple resolve to attend or assist a local NCAN Support Group on a regular basis; an offer to assist or develop an NCAN Awareness Event; a positive social media presence for NCAN….these are all desired and needed. A monetary Tax-Deductible Donation, of any amount or frequency, is especially appreciated. Putting NCAN as a monthly budget line can yield big results; designating NCAN in the AMAZON SMILE program is near effortless. Gifts in honor or in memory of a loved one are especially significant. Whatever your ability and motivation, let’s continue our NETS AWARENESS throughout the year with our gifts and talents to continue the support and educational opportunities which NCAN has provided since 2004.

Contributions to NCAN of any size will make a difference:

$25 – Provides supplies to a patient support group for a month
$50 – Puts a comprehensive patient information packet in the hands of a NETS cancer patient
$100 – A monthly donation of $100 will help provide ongoing training for support group leaders
$500 – Keeps the patient hotline open for a month
$1000 – Sponsors a doctor to learn more about Neuroendocrine Cancer and earn CME credits
$2000 – Sends an expert to provide urgently needed information at a patient conference

Please help NCAN to make 2020 a breakthrough year for NET Cancer Awareness.


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She Saved My Life

October 29, 2019

Video by Ms. Becca Roth.

When Ronda Ayala was diagnosed with neuroendocrine pancreatic cancer, she had a Whipple procedure and was told she was cured. Ronda became an advocate for others, creating the Whipple Warriors. Through her advocacy she met Maryann Wahmann, the founder of Neuroendocrine Cancer Awareness Network (NCAN). Maryann insisted that Ronda get checked because her cancer can come back. She did, it did, and as Rhonda says, “She saved my life.”


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The Healing Power of Awareness

October 23, 2019

by Ms. Anne Dabbs

American author and playwrite James Thurber’s words are sound advice for all people, but may have special meaning for those of us living in the world of Neuroendocrine Cancer. Many of our stories as patients and caregivers contain elements of anger and fear. Anger can be intensified during a frustrating diagnosis process or a failed treatment. Perhaps our anger is directed at ourselves for being careless in our self care or a result of frustrations adjusting to new limitations.

Fear, an unpleasant feeling triggered by the perception of danger (real or imagined), is perhaps the most prevalent emotion once we enter our NETS experience. Scananxiety is real and constant for many. Test results, financial concerns, and social challenges are unending. The fear of the unknown or becoming a burden to our loved ones loom persistently. Normal emotions for everyone, but the singular fears accumulate to monstrous fears and become monumental for us. Part of our living well with Neuroendocrine Cancer includes managing these emotions……it is an ongoing process.

James Thurber urges us to look around in Awareness. Can we subdue the anger? Can we lessen the Fear? By tuning in to our self awareness in this new identity can we better learn to cope? As we become more aware of our NET selves, we can focus less on the associated negativity and turn our energies outward.

November 10 is NEUROENDOCRINE CANCER AWARENESS DAY. Many in our community will choose to share this observance via social media. Others will make a monetary donation to a support or resource organization. And hopefully, greater numbers will participate in a community involvement activity.

We can diminish our anger, and reduce the fears by building up awareness for our NETs community. Increased awareness translates to increased clinical trials, increased fundings, better educational opportunities for the medical field and for patients. We owe it to ourselves to step away from the negative and to be drawn to the positivity of Awareness.


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Prayers, Not Politics

October 11, 2019

by Ms. Anne Dabbs

Our NETS community was once again in the national news as the obituary of Ms. Raine Riggs was reported earlier this week.

We at NCAN want to extend our sincere condolences to her family and friends at this sorrowful time. To read Ms Riggs obituary, we are introduced to a young woman who lived her life in service for others. In addition to her myriad of philanthropic endeavors, Ms Riggs’ obituary notice in the “Newsweek”  publication contains more astonishing reporting…a basic and accurate description of Neuroendocrine Cancer which is listed as her cause of death.

Heartbreakingly, the article states that she began feeling severely ill only 3 weeks before being diagnosed with Neuroendocrine Cancer and then dying a mere two days later. Specific details beyond these facts are pure speculation for our NETS community and are most likely too raw for her family to publish at this point. Our community members have been rocked to our core once again, coming to grips with our personal experiences with this bizarre disease. It is a challenge for us to not grasp for more information, and to once again be frustrated by limited details.

As we grieve with the Riggs/Sanders family, we can be comforted by the fact that Ms Riggs’ cause of death was correctly identified as Neuroendocrine Cancer. And in true philanthropic fashion, that is her gift to our community.

Accepting the diagnosis of a rare and incurable cancer is challenging. Talking about it in casual conversation is awkward. Sharing it with the world is admirable. If you are able to share your NETS story in a larger forum, please do so. If you are able to share NETS educational opportunities, please act accordingly. If you are unable to share openly about our disease, please establish a relationship with a NETS organization whose mission is for increased research, education, and advocacy. In honor and recognition of her generous heart and service to those often overlooked, let us be motivated to bring her attitude to our endeavors for increased awareness and additional education.


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NCAN Is On The 2019 Top-Rated List!

Congrats! You’ve Won A Spot On The 2019 Top-Rated List!

May 21, 2019


Neuroendocrine Cancer Awareness Network Inc. has earned a spot on the 2019 Top Rated List! Your community has shared their inspiring stories about your work. We congratulate you on all of your accomplishments.

You’ll be featured on our site, our 2019 Top-Rated List, and distributed to media and corporate foundations.


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New Biobank to Lay Foundation for Neuroendocrine Tumor Research

Calling For NET Patients Nationwide To Help Advance The Field.

April 29, 2019

by Renuka Iyer, MD,
Chief, Gastrointestinal Oncology; Co-Director, Liver & Pancreas Tumor Center; Founder, Roswell Park Neuroendocrine Tumor Biobank

The mission of cancer research – to find better and more effective ways to treat or prevent cancer – begins with a better understanding of the disease. Knowing how a cancer begins and how it grows is an important first step toward fighting it and has led to remarkable advances in oncology.

But for rare cancer types like neuroendocrine tumors (NET), those advances have been few and slow. Research lags for the simple fact that the cancer is very rare, and each of the many subtypes is even more rare. Because far fewer people develop NETs than breast or lung cancer, for example, scientists have limited cases to study. No one cancer center has enough cases of the disease to make meaningful conclusions about it and advance the field.

In establishing the Neuroendocrine Tumor Biobank, Roswell Park aims to assemble the nation’s largest collection of NET cases – including biospecimens such as tumor and blood samples, plus patient medical and lifestyle information. Then we can finally begin to get some answers to our questions about neuroendocrine tumors, such as: What are the risk factors? What makes this cancer grow or spread? and How can we treat it more effectively?

How You Can Help

If you have been diagnosed with a neuroendocrine tumor, I urge you to consider participating in the NET Biobank. Your participation is voluntary, comes at no cost to you, and involves these important steps:

1. Fill out a questionnaire detailing your personal medical and treatment history.
2. Donate a small vial of blood, which can be drawn by your own physician or a laboratory near you.
3. Donate a sample of your biopsy or tumor (removed in a previous surgery). If you have had your neuroendocrine tumor biopsied or removed, we would ask your permission to have a small sample of that tumor sent to us from the facility that performed your surgery.

It’s estimated that about 170,000 people in the U.S. are living with neuroendocrine cancers. Collecting information and biospecimens from that many patients in one place would speed NET-focused research and lead to new treatment advances.

To get started, submit this online Pre-Screening form and we will contact you to discuss how you can be part of changing how we approach this cancer.


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The PAN Foundation Opens New Carcinoid Syndrome Patient Assistance Fund

April 17, 2019
Washington, D.C.

The PAN Foundation today opened a new patient assistance program for people living with carcinoid syndrome. Carcinoid syndrome occurs when an underlying carcinoid tumor produces excessive amounts of serotonin, often due to liver metastases.

Carcinoid tumors are rare. The National Organization for Rare Disorders estimates 27 new cases per one million people are diagnosed in the U.S. each year—of which 10 percent develop into carcinoid syndrome. Qualifying patients are eligible to receive grants from PAN to pay for the deductibles, co-pays and coinsurance costs associated with their carcinoid syndrome treatment.

“High out-of-pocket costs present significant barriers to patient access and adherence to care—often forcing patients to forgo or delay treatment,” said PAN President and CEO Daniel Klein. “We strongly believe that high out-of-pocket costs should never prevent people from accessing the healthcare they need. Thanks to our generous donors, we are pleased to extend our assistance to people living with carcinoid syndrome, so that they can adhere to their treatments and better manage their conditions.”

Patients who qualify for the PAN Foundation’s Carcinoid Syndrome Assistance Program are eligible to receive $6,700 per year in financial assistance. Eligible patients must be getting treatment for carcinoid syndrome; must reside and receive treatment in the United States; must have Medicare health insurance; and the medication for which they seek assistance must be covered by their insurance and listed on PAN’s list of covered medications. In addition, patients’ income must fall at or below 500 percent of the Federal Poverty Level.

Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation’s online patient portal (www.panapply.org), or by calling 1-866-316-7263, 9 a.m. to 7 p.m. Eastern Time, Monday through Friday. To learn more about PAN’s nearly 70 disease-specific programs, visit panfoundation.org.

About the PAN Foundation:
The PAN Foundation is an independent, nationwide 501(c)(3) organization dedicated to providing help and hope to underinsured patients who are unable to afford the out-of-pocket expenses for their prescribed medications. Since 2004, PAN has provided over $3 billion in financial assistance to nearly 1 million patients who would otherwise be unable to afford their medications. To learn more, visit www.panfoundation.org.


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Conquer Magazine’s 2016 Heroes of Hope Book

Conquer Magazine’s 2016 Heroes of Hope Book featuring Maryann Wahmann of NCAN & Cindy Lovelace of The Healing NET Foundation!

In 2016, Conquer Magazine released their Heroes of Hope: Celebrating the Patient Voice book. Featured are Heroes of Hope WINNER Maryann Wahmann, President of NCAN, and Heroes of Hope nominee Cindy Lovelace of The Healing NET Foundation.

Again, we would like to congratulate both Maryann and Cindy on their nominations for the 2016 Heroes of Hope Award, as well as a big congratulations to Maryann Wahmann on being the 2016 Heroes of Hope award recipient! The community thanks you both for all of the hard work and dedication you both give back to us!

For more information on NCAN, you can find that here at www.netcancerawareness.org!

For more information on The Healing NET Foundation, you can find that here at www.thehealingnet.org!


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Five Reasons to Attend a Neuroendocrine Cancer Patient Conference!

Educational opportunities. No matter how experienced you are about handling your disease, everyone can learn. Being treated for a rare cancer can often be isolating, and without exposure to a variety of points of view, we can miss new ideas and trends that can impact our futures. The educational aspect of a conference can expose you to new treatment regimens and therapies and help you discover how to be a more productive advocate for your treatment and care.

Networking with peers. Patient conferences provide a great opportunity to network. Often patients and caregivers from different regions of the country can become valuable resources for referrals and best-practices. Avoiding your peers for whatever reason you have can actually limit you own success in fighting neuroendocrine cancer. You will find that the people who come together at a conference can help each other uncover ideas and spark inspiration when they get to know each other on a personal level.

Encounter the vendors & suppliers who provide the therapies you need. Too often people shy away from exhibitors at conferences. They fear they will have to talk to salespeople, but these industry suppliers are some of the best people for you to get to know if you want to learn more about the current direction of treatment. Discovering innovative products and services for your business is critical to your treatment and care in today’s fast-paced world. Invest time with the sponsors at the event and turn them into your friends and allies.

Position yourself as an expert. It has been suggested that well over half the requests by neuroendocrine cancer patients to their physicians for specific treatments are honored. A neuroendocrine cancer patient conference is the perfect opportunity to build your knowledge and become a better advocate for your health! You will hear directly from experts. Save your life by making sure you know enough to participate in your care so you are getting the best treatment plan possible.

Have fun. Being a neuroendocrine cancer patient or caregiver is hard work and it is stressful. All work and no play can get old fast. Patient conferences can add a layer of enjoyment to managing your disease by mixing a social aspect into your patient journey. Taking an extra day at the beginning or end of the trip to explore or visit friends in the region is also a great way to maximize the investment in travel. Never underestimate the power of a little fun mixed with some interesting people!

The internet won’t replace the conference experience. Many falsely believe that since they can now access industry information via the internet that the days of the live meeting are gone. The truth is, meetings are more important than ever. The value in meetings comes from the human-to-human connections that occur. Often people cite the serendipidous “hallway-conversations” that they have with other attendees as the most valuable parts of attending an event. While these are not on the agenda, or mentioned in the learning objectives, when two or more people begin to discuss topics on a deeper and personal level, the success of the event to those involved becomes irreplaceable. It is the people that bring the ROI to your time at a conference.

NCAN has upcoming conferences scheduled for 2018. Why not make it your business to attend at least one of them?


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FDA Approves Lexicon Drug XERMELO!

FDA Approves Lexicon Drug Xermelo (TELOTRISTAT ETHYL) 250 MG as first and only oral treatment for Carcinoid Syndrome Diarrhea in cancer patients with Metastatic Neuroendocrine Tumors!
First-In-Class: Tryptophan Hydroxylase Inhibitor Orphan Drug XERMELO Now Available to Treat Rare and Debilitating Condition Characterized by Frequent, Severe Diarrhea

The Woodlands, Texas, February 28, 2017 – Lexicon Pharmaceuticals, Inc. (Nasdaq: LXRX) announced today that the U.S. Food and Drug Administration (FDA) has approved XERMELO (telotristat ethyl) 250 mg as a first and only orally administered therapy for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapyi. Carcinoid syndrome is a rare and debilitating condition that affects people with metastatic neuroendocrine tumors (mNETs)ii. XERMELO targets the overproduction of serotonin inside mNET cellsiii, providing a new treatment option for patients suffering from carcinoid syndrome diarrhea. This new treatment is now available by prescription and will be in select specialty pharmacies beginning March 6, 2017.

“Today’s approval of XERMELO represents a shift in the treatment paradigm of carcinoid syndrome diarrhea for cancer patients who are inadequately controlled by SSA therapy, and until now, have had limited options to manage this debilitating condition,” said Lonnel Coats, Lexicon’s president and chief executive officer. “We are proud to have discovered and developed this ground-breaking orphan drug, and it is an honor to make it available for the thousands of patients currently suffering from this condition who wish to lead a more routine life with fewer incidences of severe diarrhea.”

Carcinoid syndrome is a rare condition that occurs in patients living with mNETsiv and is characterized by frequent and debilitating diarrhea that often prevents patients from leading active, predictable lives, as well as by facial flushing, abdominal pain, fatigue and, over time, heart valve damage.

“The approval of XERMELO establishes a new treatment option for patients with carcinoid syndrome diarrhea that is inadequately controlled by SSA therapy,” said Matthew H. Kulke, M.D., TELESTAR primary investigator, director of the Program in Neuroendocrine and Carcinoid Tumors at Dana Farber Cancer Institute and Professor of Medicine, Harvard Medical School. “Inhibition of tumoral serotonin production represents a novel approach for patients with this condition. Studies have shown that XERMELO can reduce the debilitating effects of carcinoid syndrome diarrhea and has a favorable efficacy and safety profile in patients who currently have limited treatment options.”

Discovered using Lexicon’s unique approach to gene science, XERMELO is the first and only approved oral therapy for carcinoid syndrome diarrhea. XERMELO targets tryptophan hydroxylase, an enzyme that mediates the excess serotonin production within mNET cells.
Lexicon has built the in-house capability and infrastructure to launch and market XERMELO in the U.S., where it retains all commercialization rights. Lexicon also retains rights to market telotristat ethyl in Japan. Lexicon has established a license and collaboration agreement with Ipsen to commercialize telotristat ethyl in Europe and other countries outside of U.S. and Japan. For more information about XERMELO, please visit www.xermelo.com.

XERMELO Important Safety Information
Warnings and Precautions: XERMELO may cause constipation which can be serious. Monitor for signs and symptoms of constipation and/or severe, persistent, or worsening abdominal pain in patients taking XERMELO. Discontinue XERMELO if severe constipation or severe persistent or worsening abdominal pain develops.
Adverse Reactions: The most common adverse reactions (≥5%) include nausea, headache, increased GGT, depression, peripheral edema, flatulence, decreased appetite, and pyrexia.
Drug Interactions: If necessary, consider increasing the dose of concomitant CYP3A4 substrates, as XERMELO may decrease their systemic exposure.

For more information about XERMELO, see Full Prescribing Information at www.xermelo.com.

About Lexicon
Lexicon is a fully integrated biopharmaceutical company that is applying a unique approach to gene science based on Nobel Prize-winning technology to discover and develop precise medicines for patients with serious, chronic conditions. Through its Genome5000 program, Lexicon scientists have studied the role and function of nearly 5,000 genes over the last 20 years and have identified more than 100 protein targets with significant therapeutic potential in a range of diseases. Through the precise targeting of these proteins, Lexicon is pioneering the discovery and development of innovative medicines to safely and effectively treat disease. In addition to XERMELO, Lexicon has a pipeline of promising drug candidates in clinical and preclinical development in diabetes and metabolism and neuropathic pain. For additional information please visit www.lexpharma.com.

In an effort to ensure all appropriate patients have fast access to affordable treatment, Lexicon offers LexCares—a comprehensive program designed to guide patients through each step of their treatment journey. Through LexCares, patients will have access to financial assistance programs that may reduce or eliminate out-of-pocket costs associated with their XERMELO prescription. For additional information about the LexCares program, visit www.xermelo.com/lexcares.

Safe Harbor Statement
This press release contains “forward‑looking statements,” including statements relating to the safety and efficacy and the therapeutic and commercial potential of XERMELO (telotristat ethyl) 250 mg. In addition, this press release also contains forward looking statements relating to Lexicon’s growth and future operating results, discovery and development of products, strategic alliances and intellectual property, as well as other matters that are not historical facts or information. All forward‑looking statements are based on management’s current assumptions and expectations and involve risks, uncertainties and other important factors, specifically including the degree of market acceptance of XERMELO, the availability of coverage and reimbursement for XERMELO, Lexicon’s dependence on third parties for manufacturing and distribution of XERMELO, Lexicon’s compliance with applicable legal and regulatory requirements and other factors relating to the commercialization of XERMELO. Other risks include Lexicon’s ability to meet its capital requirements, successfully conduct preclinical and clinical development and obtain necessary regulatory approvals of its other potential drug candidates, achieve its operational objectives, obtain patent protection for its discoveries and establish strategic alliances, as well as additional factors relating to manufacturing, intellectual property rights, and the therapeutic or commercial value of its drug candidates. Any of these risks, uncertainties and other factors may cause Lexicon’s actual results to be materially different from any future results expressed or implied by such forward‑looking statements. Information identifying such important factors is contained under “Risk Factors” in Lexicon’s annual report on Form 10‑K for the year ended December 31, 2015, as filed with the Securities and Exchange Commission. Lexicon undertakes no obligation to update or revise any such forward‑looking statements, whether as a result of new information, future events or otherwise.
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To read the full press release from Lexicon: xermelo-fda-approval-release-final


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NCAN on Happy Sunday Morning LIVE!

Maryann and Bob Wahmann of NCAN made a live appearance on WLINY Studios LIVE show Happy Sunday Morning with David Gussin to discuss Neuroendocrine Cancer, NCAN, and many upcoming projects and events coming in the NET community!

They also discussed the REAL reason behind choosing the zebra to represent Neuroendocrine Cancers!

You can view their segment on Happy Sunday Morning with David Gussin HERE!  (NCAN segment beginning 24:35 minute mark!)

NCAN would like to send a BIG Thank You to David Gussin and WLINY Studios LIVE for helping spread awareness of Neuroendocrine Cancers and helping NCAN spread the word of our mission!


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The Neuroendocrine Cancer Awareness Network (NCAN) is excited to announce their new branch, NCAN NETCARE.

NCAN NETCARE is the newest addition to the NCAN family in the continuing efforts to meet the needs of the Neuroendocrine Community. NCAN NETCARE will host accredited CME and CMU programs to reach and continue education of Neuroendocrine Cancers to physicians and nurses.
After years of working towards this expansion, NCAN and NCAN NETCARE are happy to announce their first CME program coming this June in joint production with Stony Brook University, School of Medicine, Office of Continuing Medical Education (OCME) the Accredited Provider, to present Neuroendocrine Tumor Management: Evolving Therapies & Approaches on June 10th, 2017 being held at the Melville Marriott, 1350 Walt Whitman Road, Melville, NY 11747. Neuroendocrine Tumor Management: Evolving Therapies & Approaches will be a CME Catagory 1 credit worth up to 5.00. Registration for Neuroendocrine Tumor Management: Evolving Therapies & Approaches will open April 25th, 2017.
NCAN and their board has expanded on the importance of why they have decided to grow into this space:

“Over the last seven years, there has been dramatic change in the neuroendocrine (NET) field. There have been several large randomized phase III trials of novel treatments completed resulting in new drug approvals. In parallel, there has been an increased understanding of specific biological pathways implicated in neuroendocrine tumor growth. Additionally, significant developments in diagnosis, loco-regional and systemic therapy are rapidly being developed. Consequently, there is a clear need for physicians and allied health care providers to learn about the management options for patients with neuroendocrine tumors, how to sequence treatments and familiarize themselves with new therapeutic, surgical and regional approaches to these diseases.
In light of these rapid developments, we are producing these meetings to draw medical professionals who treat NET patients with the aim of disseminating new information and discussing key clinical trials goals. The intent of the conference is to provide up to date evidence based practice to health care professionals involved in the diagnosis, treatment and management of the patients living with these malignancies. Ultimately this will result in a tremendous benefit to the patient population by improved outcomes and survival.”

More CME and CMU programs will be available throughout the year! Keep an eye out and spread the word to your doctors as these important programs roll out.
NCAN has more exciting and important news to share very soon. Watch for these updates in the coming weeks!


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