March 30 Is National Doctors’ Day

March 30 is NATIONAL DOCTORS’ DAY. In recognition of carcinoid/neuroendocrine tumor (NET) doctors – you are our heroes and superheroes!! Pictured are some of the NET specialists throughout the United States.Carcinoid_NET Specialists collage 2015

Pictured by columns, left to right, top to bottom are:

Column 1

  • Dr. Rodney Pommier, Oregon
  • Dr. Manisha Shah, Ohio
  • Dr. Matthew Kulke, Massachusetts
  • Dr. Emily Bergsland, California
  • Dr. Aaron Vinik, Virginia

Column 2

  • Dr. Sue O’Dorisio, Iowa
  • Dr. Eugene Woltering, Louisiana
  • Dr. George Fisher, California
  • Dr. J. Philip Boudreaux, Louisiana
  • Dr. David Metz, Pennsylvania

Column 3

  • Dr. Eric Liu, Tennessee
  • Dr. Heidi Connolly, Minnesota
  • Dr. Richard Warner, New York
  • Dr. Alexandria Phan, Texas

Column 4

  • Dr. Thomas O’Dorisio, Iowa
  • Dr. Pamela Kunz, California
  • Dr. Lowell Anthony, Kentucky
  • Dr. Jennifer Chan, Massachusetts

Column 5

  • Dr. Edward Wolin, Kentucky
  • Dr. Yi-Zarn Wang, Louisiana
  • Dr. Diane Reidy Lagunes, New York
  • Dr. Jonathan Strosberg, Florida
  • Dr. James Yao, Texas

Information about these doctors and additional physicians can be found on the Carcinoid Cancer Foundation’s Find a Doctor list: http://www.carcinoid.org/patient/treatment/find-a-doctor.

For local physicians who would like to contact national and international carcinoid/NET specialists to discuss and share their experiences with diagnostic, treatment and surveillance options and procedures for rare neuroendocrine cancers, there is an online discussion group here: http://carcinoid.org/physician/other-resources/online-discussion. Many of these specialists have up to forty years’ experience in managing these orphan diseases.

 

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Cancer and Meditation by Cy Ball

Our guest blogger this month is Cy Ball, a retired computer software developer, enthusiastic fly fisherman, and music producer. He was diagnosed with carcinoid cancer about a year after his retirement, with a primary tumor in his intestinal area (still not located) and metastatic tumors to his liver. Cy shares his journey, and his incredible music, in his blog Cy Ball — Music.

Cy Ball
Thank you, Cy, for raising awareness of carcinoid and neuroendocrine tumors (NETs)!

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May 6, 2011, “The biopsy shows that you have a neuroendocrine tumor. It is a cancer! We are scheduling you to see an oncologist.” Those words on the phone are chilling, as many of us know. All I heard at first was CANCER. “Will I die soon?” was the first thought. It took a while to find out what a NET is and that my particular NET was called Carcinoid Tumor.

After that, there is continuous mental, psychological and physical turmoil. I read about the experts’ recommendations and find that many oncologists don’t believe those recommendations. Sandostatin injections worked to reduce the syndrome. Transcatheter arterial chemoembolization (TACE) caused a Carcinoid Crisis which endangered my life. The TACE made me very sick for nearly a month, but eased my syndrome and shrank some tumors. However, after only six months, my syndrome returned worse than ever and tumor growth restarted. Then I got sicker and had to fight for the surgery that should have come first in any case. Since liver surgery 19 months ago, my syndrome only occurs infrequently, usually when I travel. There are still two tumors in my liver and the primary tumor is not located. Other symptoms (night sweats, evening chills) occur less often and with less severity than before the surgery.

So, my story is not much different from any other carcinoid’s story. I wrote only this short version of my story to discuss how meditation helped me through those times and continues to help me.

About nine months before the initial diagnosis, I had started going to a weekly meeting involved some meditation training. During that meeting there were as many as 30 people meditating for 20 to 30 minutes. By the time I got the carcinoid diagnosis, I was still going to that meeting and meditating most days for 15 minutes at home. After that diagnosis, I started meditating at home as much as one hour twice a day, especially during the sickness caused by the TACE. Since recovering from the TACE treatment, I do not meditate as long or as often but I still aspire to meditating every day.

Mindfulness and meditation have been shown to help many patients manage pain. The pain from TACE and from the surgery seemed less of a problem to me (my perception is what counts here) and I was able to get off of narcotic pain killers relatively soon (certainly those pain killers were needed for a while!) Although I hated it and I did have at least one emotional breakdown during the sickness after TACE, I believe that it would have been worse without meditation.

Much has been written about the depression that cancer patients often suffer. We carcinoids have an additional whammy from our disease. It seems that our tumors may be producing stuff that depresses us and can cause incidents called “carcinoid rage”. Once or twice, I had a rage incident. It is very out of character for me and very embarrassing. I believe that meditation and the emphasis on being “present” and “in the moment” have minimized those incidents and enabled me to realize what was happening and control it.

I know that I was living with the depression for two years and could feel it increasing but with daily meditation and the weekly group meditation, there seemed a better ability to recognize it and live with it. It is difficult for a cancer patient to understand all the medical jargon and with our disease, it is difficult to understand what is the best treatment and what options we actually have. I believe that with meditation, I was able to better think, isolate and understand the issues and make decisions regarding my treatment. Amazingly my depression disappeared after the liver surgery and has not yet returned! I am lucky.

In the event that our treatments don’t help and we have to live with the symptoms of the disease or even when the disease progresses, meditation can help us to maintain a positive attitude and live the life that we have rather than focus the difficulties of our life with the disease.

Meditation can be beneficial for carcinoid and neuroendocrine tumor patients

The American Cancer Society has a good page on meditation:
http://bit.ly/1g586RL

The NIH has this overview of meditation and its effectiveness:
http://1.usa.gov/1BQ4I9l

Meditation can be learned in many ways. If you do yoga, you are already learning meditation. Meditation is taught in centers around the world. Often there are free classes and you would get the opportunity to meditate in a quiet room with a number of other people. In fact many hospitals and cancer centers have begun to offer meditation classes for their patients. I find that meditation in the company of others is very powerful although most of the time I meditate at home. I use a Shambhala Meditation Center in Denver. There are over a hundred of these world wide. Probably the best way to learn to meditate is with a good teacher.

You can also teach yourself. Here is an article on how to meditate by Sakyong Mipham Rinpoche who is the leader of the Shambhala Institute: http://bit.ly/1EbNl1m

There are numerous books and videos and audios as well.

Finally, I am an amateur composer of electronic music. This piece called “Carcinoid” was composed during the time that I was recovering from the TACE treatment and still getting used to the idea of having an incurable cancer. You can hear the sickness, fear and anger: https://soundcloud.com/cyball/carcinoid.

Cy Ball's music, Carcinoid on SoundCloudA month later, I am much more upbeat: https://soundcloud.com/cyball/technocracy.

My full story and my music are on my blog are at: http://cyrilfb.com/.

Cy Ball's blog about music and carcinoid cancer

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3rd Theranostics World Congress Offers Free Patient Program on March 14

Johns Hopkins University in Baltimore, Maryland will be the site of the 3rd Theranostics World Congress on Ga-68 & PRRT from March 12-14, 2015. Co-sponsored by the Society of Nuclear Medicine and Molecular Imaging and Johns Hopkins Medicine, the Congress is intended for those interested in translational research and current state-of-the-art molecular imaging using 68Ga PET radiopharmaceuticals and radionuclide therapy.

3rd Theranostics World Congress

The final day of the Congress, Saturday, will feature a free patient program made possible by the generous support of nonprofit sponsors, the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation.

Carcinoid Cancer Foundation is a Nonprofit Sponsor for Patient Education Program, 3rd Theranostics World Congress

Caring for Carcinoid Foundation logo

Theranostics is a term that defines ongoing efforts to develop more specific, individualized therapies for various diseases, and to combine diagnostic and therapeutic capabilities into a single agent. Personalized medicine is a rapidly growing field of healthcare in which treatments are as individualized as the disease they are targeting. Factors taken into consideration are each person’s unique clinical, genetic, genomic, and environmental information. This is especially important for neuroendocrine cancers such as carcinoid and pancreatic neuroendocrine tumors because, according to Professor Richard P. Baum, Co-Chair of the Congress Committee and expert on PRRT, NET cancer is not one disease. NET tumors are not a single tumor entity, he explains, but probably a 100 tumor entity with many different features. Thus the treatment for each patient must be based upon whether the tumor is progressive, aggressive, and the biological behavior of the tumor.

Plenary lectures and invited talks by world renowned experts will focus on 11 key areas during the Congress ranging from 68Ge/68Ga Generators, Post-Processing and Synthesis Modules to Theranostic Targeting Vectors to Peptide Receptor Radiotherapy: Status Quo and Where to Go. Presentations on clinical applications and patient advocacy are new to this Congress, providing a unique perspective for attendees.

The Saturday, March 14 program for patients will feature sessions on:

• State-of-the-Art Management of NETs: Clinician and Patient Perspectives
• Gallium Approval in the US: Background and Moving Forward
• How to Deliver Theranostics
• Congress Highlights and Looking to the Future

Why are the Ga-68 scan and PRRT so important for carcinoid/NET patients? They are in the forefront of imaging, diagnostic, treatment and follow-up tools for NET cancer. The Ga-68 scan is extraordinarily clear and sensitive, explains Dr. Baum, and can detect neuroendocrine tumors as small as 4 millimeters. It is also an excellent tool for measuring the density of a patient’s receptors. This is especially important as the only way PRRT can work is for patients to have somatostatin receptors in their tumors.

Gallium 68 Around the World

PRRT is effective, says Dr. Baum, even for very advanced cases. The treatment leads to a significant improvement of clinical symptoms such as decreases in flushing, pain and diarrhea; weight gain in underweight patients; the ability to give up octreotide therapy; and improvement of overall health.

Widely used in Europe, 68Ga PET radiopharmaceuticals have only been used in the US in investigational trials under INDs. With the potential of an approved agent available in the United States in the near future, the Congress is especially timely.

The Patient Education Day of the 3rd Theranostics World Congress will afford patients and their caregivers the opportunity to attend the final day of the congress (Saturday) focusing on patients and current perspectives on imaging and therapy for NET patients using Theranostics as well as the availability in the US at this time.

Registration for patients and their caregivers for Saturday is free of charge. Pre-registration is required and must be done prior to March 8th. No CME credits are available for registration through this program. To register, click here: https://norcalcarcinet.org/index.php?option=com_civicrm&task=civicrm/event/register&id=12&reset=1

3rd Theranostics World Congress

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First Northeastern Facility Offers Gallium-68 DOTATOC PET/CT Imaging for Carcinoid and Neuroendocrine Cancer Patients

When Brian Hakimian had the 68Gallium DOTATOC PET/CT scan at the Icahn School of Medicine, Mount Sinai in New York City on January 14, 2015, he became the first carcinoid patient to undergo this novel imaging test at a northeastern facility. Now in clinical studies in the United States, the Gallium-68 scan enables physicians to diagnose, stage, and monitor response to treatments in carcinoid and neuroendocrine cancer patients.

Gallium 68 scan at Mount Sinai, New York City

Pictured left to right: Brian Hakimian, Dr. Richard R.P. Warner and Dr. Lale Kostakoglu

The radiopharmaceutical 68Gallium DOTATOC was designated as an orphan drug by the U.S. Food and Drug Administration (FDA) for the management of neuroendocrine tumors (NETs) in 2013. This designation is significant because it may lead to faster approval of the agent, which would greatly benefit carcinoid/NET patients in the United States. IBA Molecular is supplying the 68Gallium DOTATOC for clinical use in the New York, New Jersey, and Pennsylvania regions for the newest 68Gallium clinical studies. Additional studies are ongoing in California, Indiana, Iowa, Maryland, and Texas.

The study at Mount Sinai Hospital is headed by Lale Kostakoglu, MD, MPH, Chief of Nuclear Medicine and Molecular Imaging at the Icahn School of Medicine, and Richard R.P. Warner, MD, Director of Mount Sinai’s Center for Carcinoid and Neuroendocrine Tumors and Medical Director of the Carcinoid Cancer Foundation. “We are pleased to be working with IBA Molecular for the supply of this important new tracer,” said Dr. Kostakoglu, “The ability of IBA Molecular to provide CGMP-manufactured doses of this compound is key to the success of this new phase of our molecular imaging program.”

The primary goal of the Mount Sinai study is to demonstrate the safety and efficacy of 68Gallium DOTATOC as an accurate imaging technique for diagnosis, staging, and monitoring of response to treatment in patients with somatostatin-receptor expressing tumors.

According to research presented at the Society of Nuclear Medicine’s 2012 Annual Meeting, “A molecular imaging method that combines PET and CT scans with Gallium-68 pinpoints hormonally active tissues in the body that could change the course of treatment for many patients with neuroendocrine cancer.”

With more than 115,000 people living with carcinoid and NET cancer in the United States, options for imaging and treatment are critical to both quality of life and length of life. Brian Hakimian was diagnosed with carcinoid in April 2013 after experiencing significant facial flushing, one of the symptoms of carcinoid syndrome. Mr. Hakimian hopes the 68Gallium DOTATOC PET/CT imaging will become the standard of care for US patients as it is already the standard in Europe. The 68Gallium scan is both shorter and easier for patients, says Mr. Hakimian, and provides images that are much clearer than the Octreoscan. When Mr. Hakimian received the results of his scan he found out more information about the tumors on his liver, which confirmed the results of an Octreoscan a week earlier. He now knows that he is eligible for PRRT (peptide receptor radionuclide therapy) treatment in the future, a treatment that could have a significant impact on his health.

The 68Gallium DOTATOC clinical study at Mount Sinai will enroll 130 patients over a two-year period. For all interested in participating in the study, please contact Dr. Lale Kostakogolu, lale.kostakoglu@mssm.edu, or Dr. Richard R.P. Warner, 212-241-4299 or richard.warner@mountsinai.org, to determine eligibility for the study.

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Intelligent Patients — Just What the Doctor Didn’t Order by Ronny Allan

The Carcinoid Cancer Foundation is pleased to announce that we are going to feature guest contributors to our blog during 2015. Intelligent Patients – Just What Ronny Allan_4the Doctor Didn’t Order by Ronny Allan (pictured), a carcinoid cancer patient from the UK, is our first guest blog post. Ronny, whose own blog is Ronny Allan – Living with Neuroendocrine Cancer, is an amazing advocate for the NET cancer community. He works with Cancer Research UK, PLANETS Charity, and the NET Patient Foundation. In conjunction with NET Cancer Day 2014, Ronny took his campaign for greater awareness of NET cancers to the UK Parliament. Click here to read the newspaper coverage. 

Thank you, Ronny, for all you do to raise awareness of NET cancer and for being our first guest blogger.

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Intelligent Patients — Just What the Doctor Didn’t Order

by Ronny Allan

Since a child, I’ve recognised only a few professions which appear to be universally accepted as trustworthy – one of those is a doctor. Even today, I suspect most people still implicitly trust their doctor, or in fact, any doctor they see. It doesn’t seem to matter that the vast majority of patients don’t really understand medicine, they just seem to take it all trustingly for granted. Five years ago, if a doctor had asked me to take off my clothes and stand on one leg, I most likely would have thought this to be a genuine request ….. after all, who would foolishly question their doctor?

The growth of the internet and social media has changed the way we think about ourselves and how we interact with others. It has produced ‘virtual doctors’ who can tell you what illnesses you ‘might’ have just by looking up the symptoms you input. Not forgetting those totally unqualified social media friends and associates who are very happy to diagnose you via ‘Dr Google’. ‘Information is power’……. but misleading or misinterpreted information can be dangerous in the wrong hands, particularly a sufferer’s. However, it’s true to say that the internet has also provided access to reliable sources of properly researched and quality information.

Learn More about NET Cancer

During my diagnosis with a type of Neuroendocrine Cancer, the specialist looked at my scans and then after listening to me explaining the facial flushing I had been experiencing, he told me I probably had something rare called ‘Carcinoid’. As I walked out of his office, he said “try not to search this on the internet, it’s too vague and complicated”. I ignored his advice only to find he was correct.

I’ve now lived with NET Cancer for 4½ years which has given me time to understand the basics. The experience of going through the diagnosis and the constant tests and treatment, has been a real learning opportunity. I do have an inquisitive mind and consequently I’ve been able to soak up some of the more complex aspects of my disease. Last year I decided to devote some of my time to talking about this experience in the hope that others will benefit. This was mainly channeled through some of the mainstream NET Cancer organisations to help them spread awareness of this complex and challenging cancer. However, more recently I’ve set up a Twitter account, a Blog and a Facebook site to talk about Neuroendocrine Cancer, its associated issues and other areas of cancer interest. I said above that the growth of the internet and social media could be dangerous and this is why I’m very particular about what I publish.

So what is it that drives NET Cancer patients to learn about their disease?

I suspect Doctors are probably under greater pressure to solve and cure than they were 50 years ago. People are living longer and many will be suffering from one or more chronic conditions in addition to the illness they are presenting with at appointments. I sense the public’s expectations to be much higher, so doctors are under more pressure to deliver.

In terms of Cancer, it’s unlikely any Doctor would be familiar with over 200 different types let alone the various sub-types that can exist at a lower level. NET Cancer is rare affecting less than 6 per 100,000 and despite this, has over 6 subtypes. NET Cancer is a notoriously misdiagnosed disease – in many cases for some time before a correct diagnosis is made with the average reported to be in the region of 3-7 years. The symptoms frequently manifest as a ‘syndrome’ which mimics routine or regular illnesses. Additionally, a key facet of NET Cancer is that it is not tied to a particular organ or part of the body. As I stated in a previous blog The Anatomy of NET Cancer, the primary (if found) can be located in one of a number of locations.

Many primary care doctors will not know a great deal about NET Cancer and its associated syndromes and most diagnoses will not therefore be given until secondary care is involved either through referral or following routine or emergency treatment. Many NET Cancer patients will live with their disease for the rest of their life and will need constant surveillance and treatment. Even following diagnosis and well into treatment, a patient can still exhibit routine or regular illnesses. There’s sometimes a very fine line between attributing any problem to the cancer’s side effects or treatment; or accepting the fact that even NET patients can succumb to routine or regular illnesses unconnected to their cancer.

I help myself my being positive and proactive

I believe I need to know a lot more than the average cancer patient. I attribute this to a number of reasons, mainly:

  • This cancer can upset the body with vague symptoms and I need to be able to at least make my own risk assessments of whether something is or isn’t potentially connected to my condition – I can then take the necessary action.
  • This type of cancer is rare and some medical professionals struggle to understand it. I want to be able to articulately explain my condition when this is apparent.
  • When speaking to medical professionals or if I’m reading their letters/reports, I want to understand what they are telling me. Moreover, I want to be able to challenge them when I don’t understand – or if I don’t agree.
  • My condition and its treatment comes with side effects. I want to understand what those are and how they impact on my quality of life. Using my knowledge including most recent test results, I can then manage those effects or seek further assistance.

A doctor is really interested in finding out what’s wrong with you and then implementing a referral or treatment plan but I don’t think they would be entirely happy if patients started to dictate their own diagnosis or what treatments should be prescribed. This is why I tread carefully with my own set of doctors in both primary and secondary care. I now keep a daily diary which tracks a number of key metrics and logs anything unusual. I take this to every appointment including primary care. I’d like to think I’m now a very good patient advocate for myself and that I work with my Doctors to get to the bottom of any issues in a very positive and proactive manner. I find I’m now able to articulate myself better and am also able to understand and interpret test results including scans which I always insist on seeing. All of this gives me the feeling that I’m in control of my cancer and not the other way round.

Of course patient advocacy is not just learning about your disease and spreading awareness, it’s much wider than that. For example it also includes knowing about patient rights, matters of privacy, confidentiality or informed consent, learning about the political and regulatory world, health-care providers, organisations of health-care professionals, and about medical and pharmaceutical research communities. I mainly keep tabs on these areas via twitter which can provide excellent ‘signposts’ into relevant websites and this supports my personal blog and Facebook activities. As I said above, the internet can be a dangerous place for the uninformed but if used carefully, it can provide a vehicle for those who wish to move from ‘passive patient’ to ‘active advocate’ (see my blog Passive patient or active advocate?)

The great news is that I’m not alone on the internet! Since I started my adventure, I’ve discovered numerous bloggers, dozens of tweeters and plenty of experienced patients contributing via patient support groups. All are trying to help spread awareness and provide support to newly diagnosed patients or those who are seeking answers to their strange and vague symptoms.

As for my own mission, in addition to providing help within the NET Cancer world, I’m determined to find new audiences outside NET Cancer communities which should garner more support and understanding for my fellow patients.

Hope to see you online soon!

Ronny

Twitter: @ronnyallan1

Facebook: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723

Blog Site: https://ronnyallan.wordpress.com

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10 Highlights of the Year 2014 for the Carcinoid and Neuroendocrine Tumor Community

As the Carcinoid Cancer Foundation looks back on the year 2014, we reached out to physicians, patients, support group leaders, listserv managers, patient advocates, and business colleagues to see what they thought were among the highlights of the past year. There continue to be many significant advances and milestones in the carcinoid and neuroendocrine tumor (NET) community. Here are 10 of the year’s highlights as shared with us:

1) Gallium 68 Clinical Studies

There was great excitement in the NET community as clinical studies with the Gallium-68 (Ga-68) DOTA-TATE PET/CT scan opened in California and at the NIH in Maryland, joining the ongoing Gallium-68 studies in Iowa and Tennessee, with the study still to come in Louisiana. The Carcinoid Cancer Foundation awarded grants of more than $90,000.00 to Stanford University in California to expand access to its Gallium-68 DOTA-TATE PET/CT program for NET patients with somatostatin receptor positive tumors. 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. “With these funds we will be able to offer additional patients with no insurance approval access to the study at no charge,” said Dr. Iagaru.

Gallium-68 DOTA-TATE chemical structure

2) PRRT Clinical Trials

The ongoing PRRT clinical trial, the 177Lu-DOTAo-Tyr3-Octreotate Phase IIILu-177 clinical trial also known as NETTER-1, continues to afford patients the opportunity for a new treatment option. This international study is a multicenter randomized clinical trial in patients with inoperable progressive midgut carcinoid. The NETTER-1 study will evaluate the efficacy and safety of Lutathera® compared to high dose Octreotide LAR in patients with inoperable, progressive, somatostatin receptor positive, midgut carcinoid tumors. The primary objective of the trial is the assessment of Progression-Free Survival (PFS).   For more information about the trial, click here.

3) FDA Approves Lanreotide for Gastroenteropancreatic Neureoendocrine Tumors

On December 16, 2014 the US Food and Drug Administration (FDA) approved “lanreotide (Somatuline Depot Injection, Ipsen Pharma) for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival.” Cynthia Schwalm, President and CEO of Ipsen Biopharmaceuticals, Inc., said, “Somatuline® is the first and only treatment with a statistically significant progression-free survival benefit approved by the FDA for patients as an antitumor therapy in the treatment of gastrointestinal and pancreatic neuroendocrine tumors.” Read more here

US FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors

4) Bringing the Promising Field of Immunotherapy to NETs

A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. The Caring for Carcinoid Foundation (CFCF) launched an initiative to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancers. Specifically the initiative will fund projects in 3 major areas: 1) immunotherapy expert Dr. Carl June and NET researcher Dr. Xianxin Hua (pictured below left and center), both from the University of Pennsylvania, will modify CAR T-cells to target and kill neuroendocrine tumor cells, 2) Dr. Pamela Kunz (pictured below) from Stanford University will lead a multidisciplinary team conducting a clinical trial of 2 immunotherapy therapies in pancreatic and carcinoid NET patients; and 3) a study of the immune characteristics of NETs to guide CFCF’s testing of immunotherapy therapies; immunology experts will be awarded grants to study and profile NET tumors. A $1 million grant from the TripAdvisor Charitable Foundation is supporting half of the projected costs of the initial projects in this initiative. Read more here.

Immunotherapy Researchers on Neuroendocrine Tumors

5) First Ever Global NET Patient Survey

The goal of the Global NET Patient Survey, a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis Oncology, was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level. Nearly 2,000 patients from 12 countries completed the survey between February 2014 and May 31, 2014. The data are being analyzed at the global, regional and country levels. The survey gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels. The quality-of-life results are the first data to be released and additional findings will follow. Read more here.

Global NET Patient Survey

6) NET Conferences

A highlight of 2014 was the national NET patient conference, sponsored by the Neuroendocrine Cancer Awareness Network (formerly Carcinoid Cancer Awareness Network), which attracted over 500 patients, caregivers, physicians, and industry colleagues to Charlotte, North Carolina. Topics ranged from An Introduction to the Basics of NETs to and How NETs Affect Your Heart to An Update on Multi Visceral Organ Transplants and The Benefit of Multidisciplinary Teams Treating NETs. Support group leaders from around the country connected while there was a special half day session on Lungnoids and DIPNECH. Join us in extending our appreciation to Maryann and Bob Wahmann for their commitment to ensuring that this important conference happens every other year.

Conferences from coast to coast and around the world were held beginning in January with the NorCal CarciNET 2014 Patient Conference in California, the Neuroendocrine Mid-Winter Conference in Colorado (February), the New England Carcinoid Connection Carcinoid and Neuroendocrine Tumor Conference in Massachusetts (May) and the PNW support group’s first NET Patient Education Day in the State of Washington (October).

The Caring for Carcinoid Foundation sponsored patient education conferences in Los Angeles, California (June) and in Pennsylvania in October in conjunction with the University of Pennsylvania’s Abramson Cancer Center.

North American Neuroendocrine Tumor Society (NANETS)NANETS, the North American Neuroendocrine Tumor Society, the organization of carcinoid/NET cancer medical/healthcare professionals, held its 7th Annual Conference in Nashville, Tennessee in October and presented regional conferences in Michigan (May), California (November), Florida (November), and Colorado (December).

Multiple Endocrine Neoplasia (MEN) was the focus of seminars and conferences, nationally and internationally. American Multiple Endocrine Neoplasia Support sponsored patient and family seminars in Illinois (March) and Minnesota (October). For the first time AMEND USA held a day-long patient conference, which took place in Florida (September). World MEN 2014, the 14th International Workshop on Multiple Endocrine Neoplasia and Other Rare Endocrine Tumors, was held in Vienna, Austria in September.

Internationally, the European Neuroendocrine Tumour Society (ENETS) held its 11th annual conference in Barcelona, Spain in March; the International Symposium on Pheochromocytoma and Paraganglioma (ISP) 2014, was held in Kyoto, Japan in September; the 2nd Annual Conference of the Asia Pacific Neuroendocrine Tumour Society (APNETS) took place in India in November; and the UKI NETS (UK and Ireland Neuroendocrine Tumour Society) 12th National Conference was in London in December.

7) NET Cancer Day, November 10, 2014

The theme of the fifth Worldwide NET Cancer Awareness Day was “Time to Diagnosis,” focusing on one of the most common issues facing carcinoid and other neuroendocrine cancer patients. The International Neuroendocrine Cancer Alliance (INCA), sponsor of NET Cancer Day, asked patients to submit photo selfies in which they held a placard showing how many years it took be diagnosed, their misdiagnosis if any, and their actual diagnosis. From New Zealand and Singapore to the United Kingdom and the United States selfies showed that a proper diagnosis took everywhere from 19 years to 6 months. Misdiagnoses included asthma, IBS, pre-diabetes, ulcers, Crohn’s disease, preeclampsia, pancreatic cyst, and anxiety.

With special thanks to the sponsors of INCA and supporters of NET Cancer Day: Novartis Oncology, founding sponsor; Ipsen; and Lexicon Pharmaceuticals.

49 US Governors Recognized the Importance of Awareness and Early Detection for Neuroendocrine Cancer Patients

The Carcinoid Cancer Foundation contacted every Governor in the United States seeking proclamations, resolutions and letters of support for NET Cancer Awareness Day 2014. A record forty-nine (49) states recognized the importance of early detection and proper treatment leading to improved outcomes and a better quality of life for carcinoid/NET (neuroendocrine tumor) cancer patients!!

8) OncLive Features Series on Pancreatic Neuroendocrine Tumors

An 11-episode series on pancreatic neuroendocrine tumors, pNETs, began in February on OncLive-TV. The series includes episodes on diagnostic challenges, pathological classification of NETs, treatment of NET liver metastases, the role of somatostatin analogues for patients with pNETs, the RADIANT-3 clinical trial, and effective sequencing of treatments for pNETs. The expert panelists are: Matthew H. Kulke, MD, moderator; Rodney F. Pommier, MD; Diane Reidy-Lagunes, MD; Jonathan Strosberg, MD; and James Yao, MD.

9) Warner Advocacy Award

Grace Goldstein, Chief Operating Officer of the Carcinoid Cancer Foundation and the first President of the International Neuroendocrine Cancer Alliance (INCA), was selected as the 2014 of the Warner Advocacy Award. Established by Novartis Oncology in 2009 to commemorate the life and work of the late Monica Warner, the Warner Advocacy Award is presented annually to honor the patient, advocate, or caregiver who most embodies the passion, dedication, leadership, and spirit with which Monica Warner assisted patients, caregivers, and families affected by NETs. Read more here.  Grace is honored to be counted as a leading advocate along with past winners of the award: Maryann Wahmann, Jan Naritomi-Hart, Susan Anderson, and Jim Weiveris.

10) NETs in the News and on Television

The New York Daily News had a feature article in April, Daily Checkup: Carcinoid tumors Have a Variety of Symptoms, spotlighting Celia Divino, MD, Chief of the Division of General Surgery at Mt. Sinai Hospital in New York City and a team member of Mt. Sinai’s Center for Carcinoid and Neuroendocrine Tumors.

BYU men’s basketball coach Dave Rose and Merlynn Densley, leader of the Utah carcinoid/NETs support group were featured on KUTV. Thanks so much for raising awareness on NET Cancer Day! Watch the video here.

Stephanie Madsen from Littleton, Colorado, was diagnosed with large cell neuroendocrine carcinoma of the cervix, an extremely rare and aggressive form of cancer. A three-time cancer survivor she entered and won the CoverGirl Bombshell contest and received a VIP trip to the Ellen TV-show. Watch the video of Stephanie on the Ellen show here.

NET Survivor Stephanie Madsen Chosen as Cover Girl Bombshell Winner Appears on the Ellen TV Show

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We would also like to recognize the following as significant for the carcinoid/NET community in the year 2014:

Edward Wolin, MD joins Markey Cancer Center as Director of the Carcinoid and Neuroendocrine Tumor ProgramDr. Edward M. Wolin (left) was named Director of the Markey Cancer Center’s Carcinoid and Neuroendocrine Tumor Program at the University of Kentucky.

Eugene A. Woltering, MD, The James D. Rives Professor of Surgery and Neuroscience and Director of Surgical Research at LSU Health Sciences Center/Ochsner in Kenner, Louisiana, has been selected to serve as Chair of the Neuroendocrine Tumors Expert Panel for the American Joint Committee on Cancer’s (AJCC) AJCC Cancer Staging System, 8th Edition.

Emily Bergsland, MD, a NET/gastrointestinal oncology specialist at the UCSF Helen Diller Comprehensive Cancer Center in California, has been named Vice-Chair of the Neuroendocrine Tumors panel.

Zebra Talk is a terrific new resource for carcinoid and neuroendocrine tumor patientsZebra Talk Handbook for Newly Diagnosed Carcinoid and Neuroendocrine Cancer Patients and Their Primary Care Physicians and their primary care physicians. According to editor Suzi Garber, 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.” Click here to read more and download the handbook,

• “Hush” by Giovanna Imbesi was selected as one of 12 winners in the Songsforlife.org contest! It will be released on CD in February, 2015, with proceeds going to cancer research. This project is the first crowd-sourced CD for cancer research, “Finding Cures One Note at a Time.” Giovanna is the support group leader for LACNETS, the carcinoid/NET group in Los Angeles, California. Listen to her song “Hush,” featuring Toni Peete, here.

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.

Jan Naritomi-Hart and Pascal Louw• Sadly, the passing of two key support and patient/patient advocate organizations leaders (pictured above) in the United States and France. Jan Naritomi-Hart, winner of the Warner Advocacy Award in 2011, played a key role in 2 southern California NET patient support groups, the Support Education Awareness 4 (SEA4) Carcinoid and the local San Diego support group she started herself. Pascal Louw served as President of the French organization APTED, L’Association des Patients porteurs de Tumeurs Endocrines Diverses, and was APTED’s representative on the International Neuroendocrine Cancer Alliance, INCA.

From all of us at the Carcinoid Cancer Foundation, we wish you and your families a wonderful holiday season and a very Happy New Year

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Breaking News: US FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors

December 16, 2014: The US Food and Drug Administration (FDA) today approved “lanreotide (Somatuline Depot Injection, Ipsen Pharma) for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival.” Read more here.

US FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors

Earlier this year the FDA had granted priority review to Ipsen’s supplemental New Drug Application (sNDA) for the somatostatin analog lanreotide (Somatuline Depot) 120 mg injection for GEP-NETs. FDA priority review status enables drug candidates that “have the potential to offer a significant improvement in treatment compared to currently approved options.”

The submission to the FDA was supported by results of the CLARINET (Placebo-Controlled Study of Lanreotide Antiprolierative Response in Patients with GEP-NET) Phase III trial which demonstrated that lanreotide significantly prolonged progression-free survival in patients with nonfunctioning gastroenteropancreatic (GEP) neuroendocrine tumors (NETS) compared to treatment with placebo. The CLARINET study builds upon the earlier PROMID prospective trial. A much larger, multicenter, randomized, double-blind trial, CLARINET involved 204 patients, with a mean age of 63 in the lanreotide arm and 62 in the placebo arm. Dr. Kjell Oberg (pictured), NET cancer specialist from University Hospital Uppsala in Sweden, reported the results at the European Cancer Congress 2013. 

The results of the CLARINET study were published in the July 17, 2014 issue of the New England Journal of Medicine.

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