9 News Items for the Carcinoid and Neuroendocrine Cancer Community

1. Groundbreaking research from Novartis as they develop drugs that train our immune system to detect and fight tumors. Dr. Glenn Dranoff, a cancer vaccine expert, will lead Novartis’ new research efforts in the area of immuno-oncology. Read more: https://www.bostonglobe.com/business/2015/04/20/novartis-leader-targeted-therapies-looking-prime-immune-system-battle-cancer/cV75a7dyPF4ZnoqtCQoUsM/story.html

Novartis Developing New Drugs in Immuno-Oncology

2. Critical new research projects in neuroendocrine tumors (NETs)! A multi-year research alliance agreement has just been signed by Ipsen and Harvard University. The alliance will enable researchers to develop collaborative programs in NETs as well as in areas such as neuromuscular disorders. Read more: http://www.businesswire.com/news/home/20150401005208/en/Ipsen-Expands-Ties-Harvard-University-Signing-Research#.VR0spJPG-f1

3. NIH study finds genetic link for carcinoid intestinal cancer. Researchers recommend screening for people with family history. http://www.nih.gov/news/health/apr2015/niddk-16.htm

NIH logo

4. New Carcinoid NETs app — Have you downloaded the new Carcinoid NETs app? In less than 2 weeks nearly 200 people have begun using this great new resource! With everything from a journal to medication reminders to Circles of Support, the app helps you keep track of your health on a daily basis. This free app is available in the US and Canada on Google Play and the App Store and can be accessed through the Web on any desktop computer or mobile browser. Click here for downloading instructions: https://carcinoid.wordpress.com/2015/04/01/new-carcinoid-nets-mobile-app-keeping-track-of-your-health-just-got-easier/.

Carcinoid NETs App -- Tracking Your Health Just Got Easier!

5. Somatostatin receptors serve as viable markers in bronchopulmonary neuroendocrine neoplasms. Study from Germany about lung carcinoid and other bronchial neuroendocrine tumors (NETs): http://bit.ly/1yxLUui

6. Sharing the first 2 videos in a new webinar series from our Friends at CNETS Singapore: “Surgical Approaches to NETs Liver Metastases” and “Resecting Pancreatic NET Primaries.” Read more and watch the videos: https://carcinoid.wordpress.com/2015/04/14/cnets-singapore-presents-new-webinar-series-featuring-neuroendocrine-cancer-experts/

7. Carcinoid and Cushing’s Syndrome, one patient’s journey to find the answer to her symptoms. Click here to read more here.

Carcinoid Cancer and Cushing's Syndrome

8. Working Through Cancer Anger — Anger is a common emotional response to being diagnosed with and treated for cancer. Openly expressing it can be a struggle. Blogger Debbie Woodbury shares her perspective in an excellent post in CURE Magazine: http://bit.ly/1BQYsrE.

9. What a terrific innovation! VeinViewer Means No More Poking People Relentlessly to Locate Veins, http://www.industrytap.com/veinviewer-means-no-poking-people-relentlessly-locate-veins/27706

Vein Locator

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CNETS Singapore Presents New Webinar Series Featuring Neuroendocrine Cancer Experts

The Carcinoid & Neuroendocrine Tumor Society (CNETS) of Singapore is embarking on a series of webinars on various topics related to the diagnosis and treatment of neuroendocrine cancers. With the support of a grant from Ipsen Biopharmaceuticals, the webinars will take place in front of a small group of interested patients, family caregivers, physicians and other healthcare professionals and will be webcast globally to a wide audience. According to William Claxton, President and a Co-Founder of CNETS Singapore, “Thought-provoking topics for the series are being selected to include important updates from around the world.”

On March 20 two recordings were made at the 5th Biennial Congress of the Asian-Pacific Hepato-Pancreato-Biliary Association. The Congress featured expert speakers including top practitioners, opinion leaders, and researchers. Talks by Dr. Palepu Jagannath on “Surgical Approaches to NETs Liver Metastases” and Dr. Jaswinder Singh Samra on “Resecting Pancreatic NET Primaries” were recorded and can be viewed here: https://itr8.wistia.com/projects/4eujigyhr0.

Palepu Jagannath, MDDuring his presentation at the Congress Dr. Palepu Jagannath talked about the importance of disease classification and a multidisciplinary approach. He discussed the many factors that determine the best treatment for a patient including functioning vs. nonfunctioning tumors, grade of tumors, size and status of tumors, extent and distribution of liver metastases, and quality of life. He encourages surgeons to debulk tumors rather than aim for RO (no residual disease) types of resection. Dr. Jagannath also discussed using therapies such as SST-receptor antagonists and Peptide Receptor Radionuclide Therapy (PRRT) for managing many Grade 1 neuroendocrine tumors and advised surgeons to be more selective in taking such cases.

Dr. Palepu Jagannath on
Dr. Jagannath  is currently Chairman of the Department of Surgical Oncology at Lilavati Hospital and Research Centre in Mumbai, India, and Professor of Gastrointestinal Oncology, Asian Institute of Oncology, S.L. Raheja Hospital in Mumbai. He serves as President of the International Hepato-Pancreato-Biliary Association and is also active in the Asia Pacific Neurendocrine Tumor Society. He has the largest number of gastrointestinal and pancreatic NET patients in India and initiated the Asia Pacific Neuroendocrine Tumor registry. He is on the advisory board of ENETS, the European Neuroendocrine Tumor Society.

Jaswinder Singh Samra, MDDr. Jaswinder Singh Samra’s presentation focused on the benefits of surgery for pancreatic neuroendocrine tumors (PNETs) and the considerable debate about how physicians should proceed when there is lymph node involvement. He stressed the difference between functioning and nonfunctioning PNETs and how they should be treated. Location of pancreatic NETs, in the head or the tail, also influences surgeons’ decisions whether or not to resect the tumors. Dr. Samra also touched upon the information that dotatate scanning provides versus octreoscans, and chemotherapy for PNET patients in the forms of sunitinib and everolimus. In conclusion, all treatments for pancreatic NET patients is a balancing act.

PNETs, Lymph Nodes, and SEER Data

Dr. Samra is Clinical Associate Professor at the University of Sydney in Australia and consultant general surgeon with an interest in Hepato-Pancreato-Biliary surgery at the Royal North Shore Hospital and Ryde Hospitals in Sydney, NSW Australia.

International Neuroendocrine Cancer Alliance (INCA)The Carcinoid Cancer Foundation and CNETS Singapore are both members of the International Neuroendocrine Cancer Alliance (INCA), along with neuroendocrine cancer patient advocate and patient organizations from Australia, Belgium, Bulgaria, Canada, Denmark, France, Germany, Japan, New Zealand, Norway, Sweden, the United Kingdom, and other US organizations. It is CCF’s pleasure to share information about the work of our INCA colleagues in support of the global neuroendocrine cancer community. For further information about INCA and NET Cancer Day, please visit www.netcancerday.org.

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Luncheon with the Experts in White Plains, NY — Carcinoid and Neuroendocrine Tumor Patients Are Invited!

The Big Apple NETs support group invites you to join fellow carcinoid and neuroendocrine tumor (NET) patients and 3 medical experts for Lunch with the Experts on Sunday, June 14, 2015 at 12:00 pm at the Westchester Hills Golf Club, 401 Ridgeway Ave., White Plains, NY. Website: Westchesterhills.org. This is a unique opportunity to share experiences with other patients and to hear from physicians who specialize in NET treatment, in an informal setting.

Big Apple NETs Carcinoid and Neuroendocrine Tumor Support Group

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. There is no charge for the luncheon due to the generous sponsorship of a friend of the Carcinoid Cancer Foundation.

Luncheon with Carcinoid and Neuroendocrine Tumor Expert Physicians, June 14, 2015 in White Plains, NY

Luncheon with the Experts on June 14, 2015 features Dr. Richard R.P. Warner (center), Dr. Michail K. Shafir (right), and Dr. Lynn H. Ratner (left)

The experts 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.

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 wait list.

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New — Carcinoid NETs Mobile App — Keeping Track of Your Health Just Got Easier!

The Carcinoid Cancer Foundation is pleased to announce that a new unique tool for carcinoid/NETs patients and their caregivers is now available!

The Carcinoid NETs self-care tool, powered by Health Storylines™ allows you to track your mood, symptoms, and more, on the same timeline as your treatment. The Carcinoid NETs app makes sure you have an accurate, shareable record of your experience between physician visits, and helps you and your care team discover the treatment strategies that are working best for you.

New Carcinoid NETs App -- Keeping Track of Your Health Just Got Easier

With the Carcinoid NETs app, you can engage in a range of Health Tools that help you better manage your health:

  • Set medication reminders so you don’t forget a to take them
  • Track symptoms to monitor how you’re doing over time
  • Remember important dates and events related to your health with a health calendar.
    Note your health concerns so you don’t forget your questions the next time you visit your doctor
  • Use a food photo blog to become more mindful of what you eat, and record if certain foods cause heath reactions
  • Take a snapshot of all your important health documents and access them easily on the app anytime, anywhere
  • Document your health and daily living with a journal
  • Invite the people who care for you to connect as part of your Circle of Support. Share your progress with them in real time. Let them empower you with their support and encouragement, give you a boost when you need it, and celebrate your milestones.

Carcinoid NETs is available on the Web, on Google Play™ and on the App Store℠ in the United States and Canada and is free to use. The Web version is accessible to US and Canadian users through any desktop computer or mobile device browser. International versions of Carcinoid NETs may be available in the future.

Note: The Carcinoid NETs mobile app is available through the App store℠ and on Google Play™  only in the United States and Canada. The Web version is also available only for US and Canadian users at this time.

App Store is a service mark of Apple Inc.
Google Play is a trademark of Google Inc.

Instructions for use

Sign-up on the web

  1. Visit carcinoidnets.healthstorylines.com.
  2. Click on Register and Get Started.
  3. Fill out the registration information and agree to the Privacy Policy and Terms of Use to begin using the Carcinoid NETs.
  4. Now you can start using the web version of Carcinoid NETs self-care tool!

Download the iPhone or iPad App

New Carcinoid NETs Mobile App -- Keeping Track of Your Health Just Got Easier!

  1. To install this FREE APP, go to the Apple App Store on your iPhone or iPad, and search for “Carcinoid NETs.”
  2. Click on the GET button, then click INSTALL.
  3. Once installed, click on the Carcinoid NETs app.
  4. Click on “Sign up.” You will need to enter in the registration information and agree to the Privacy Policy and Terms of Use to begin using the Carcinoid NETs app.
  5. Now you can start using your iPhone or iPad version of the Carcinoid NETs app!

The Apple iPhone® and iPad® are registered trademarks of Apple Inc.

Download the Android™ App

New Carcinoid NETs Mobile App on Google Play -- Keeping Track of Your Health Just Got Easier

  1. To install this FREE APP, go to the Google Play™ app store on your Android device, and search for “Carcinoid NETs.”
  2. Click the INSTALL button.
  3. You will see the APP permissions screen, click ACCEPT.
  4. Once installed, click on the Carcinoid NETs app.
  5. Click on “Sign up.” You will need to enter in the registration information and agree to the Privacy Policy and Terms of Use to begin using the Carcinoid NETs app.
  6. Now you can start using your Android version of the Carcinoid NETs app!

The Google logo, Google Store and Android™ platform are registered trademarks of Google, Inc.

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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)!


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:

The NIH has this overview of meditation and its effectiveness:

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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