9 More News Items for the Carcinoid and Neuroendocrine Cancer Community

Carcinoid/neuroendocrine cancer specialist Eric Liu, MD Joins Rocky Mountain Cancer CentersCarcinoid/neuroendocrine cancer specialist Dr. Eric Liu will be joining the Rocky Mountain Cancer Centers in Denver, Colorado, effective June 1, 2015. He and medical oncologist Dr. Allen Cohn, also from Rocky Mountain Cancer Centers, will head up a new Neuroendocrine Tumor Center in conjunction with HealthONE’s Presbyterian/St. Luke’s Medical Center. The Center is a wonderful new resource for the NET community! Read more here.

Breaking News: A novel treatment against neuroendocrine tumors will be the focus of a newly announced partnership between RadioMedix, a clinical phase biotechnology company focused on the development of radiopharmaceuticals for targeted diagnosis and therapy of cancer, and AREVA Med, the AREVA medical subsidiary developing innovative therapies to fight cancer. They will co-develop the next generation of PRRT agents using Alpha emitters. Read more here.

Over 50 abstracts on carcinoid and many more on neuroendocrine tumors have just been published online as part of the 2015 American Society of Clinical Oncology, ASCO, annual meeting to be held later this month in Chicago. The Annual Meeting brings together 30,000 oncology professionals from around the world. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format. Among carcinoid/NET specialists whose research is being presented are Dr. Matthew Kulke, Dr. Diane Reidy, Dr. Jonathan Strosberg, Dr. Aaron Vinik, and Dr. James Yao. To view the online abstracts, click here. Change the search terms to see additional abstracts, i.e. neuroendocrine tumors.

ASCO 2015 Abstracts on Carcinoid and Neuroendocrine Tumors

Save the dates for upcoming conferences for neuroendocrine cancer patients, loved ones, and medical professionals. Please check our Calendar of Events as we regularly update and add events: http://www.carcinoid.org/events.

June 20, NET Cancer Patient Conference, Minneapolis, Minnesota, sponsored by Neuroendocrine Cancer Awareness Network, click here for more information and to register.

June 27, LACNETS 2015 Patient & Caregiver Education Conference, Los Angeles, California, co-sponsored by LACNETS, the Los Angeles Carcinoid Neuroendocrine Tumor Society, and the Caring for Carcinoid Foundation. Details and an agenda coming soon!

October 3,  New Jersey Carcinoid Cancer NETwork 2015 Conference, Edison, New Jersey. Details and an agenda coming soon, click here to sign up for conferences updates.

October 15-17, 8th Annual NANETS Symposium for physicians, health professionals, researchers, residents, fellows, and medical students, Austin, Texas. Click here for an agenda and more information.

The Oncolytic Virus Fund at Uppsala University in Sweden, made possible with  generous support from the late Vince Hamilton as well as donations from people worldwide, will enable clinical trials to hopefully begin in autumn 2015, but the exact timing is dependent upon the Swedish Medical Product Agency’s response to the researchers’ application. Other news from Uppsala is that the virus treatment has been named AdVince after Mr. Hamilton and the virus to be used in the clinical trials has been produced and tested. “The clinical trial will start with dose escalation to ensure that the treatment is safe. Four different dosages will be tested. Three to six patients will be tested for each dosage.” Read more here

There are 2 new support groups for carcinoid/neuroendocrine cancer patients and their loved ones: N.E.T. Hopefuls in central Florida and NEPA Zebra’s in Northeast Pennsylvania. Wanda Probst heads the Florida group and Lori DeVoe is the group leader for the Pennsylvania group. Click here for a list of support groups and contact information, the list is alphabetical by state.

NEPA Zebra's carcinoid and neuroendocrine tumor support group, Pennsylvania

Congratulations to Josh Mailman upon receiving the Service Recognition Award during the 3rd Theranostics World Congress. “As a patient and patient advocate, Josh Mailman strongly encourages patients and medical practitioners to implement and practice comprehensive integrative healthcare to improve the lives of people affected by cancer. . . .” Since his diagnosis with a pancreatic neuroendocrine tumor in 2006 Josh has focused his time and energy in the nonprofit community serving as president of the Northern California CarciNET Community, as Chair of the Patient Advocate Advisory Board for the Society of Nuclear Medicine and Molecular Imaging (SNMMI), on the Executive Board of the Society for Integrative Oncology (SIO), and as a member of the NCI task force for Neuroendocrine Tumors, among other activities.

3rd Theranostics World Congress, Josh Mailman, Award

The Clarence Light Orchestra & The Ten Mile Inn will present Country for a Cure featuring local musicians on June 13th in Galloway, Ohio. All proceeds will go the Neuroendocrine Cancer Research Fund at the Ohio State University James Cancer Hospital. The Dallas Moore Band will be the special guest performers. There will be food, raffles, and split the pot. Visit the Clarence Light Orchestra’s Facebook page for more information.

Country for a Cure, June 13, 2015

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15 Videos from the 3rd Theranostics World Congress

The 3rd Theranostics World Congress featured a patient education day on Saturday, March 14, made possible with support from the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation. The NorCal CarciNET Community provided funding to record the entire Congress and with their generous permission we share the videos from the patient education day.  The Congress was co-sponsored by the Society of Nuclear Medicine and Molecular Imaging and Johns Hopkins Medicine.  Click on the video titles or the images to watch the videos.  Some of the presentations were not recorded.  For the complete program, click here: https://vimeo.com/norcalcarcinet.

State-of-the-Art Management of NETs: Clinician and Patient Perspectives

The Clinician’s Perspective, Thomas O’Dorisio, MD

3rd Theranostics World Congress, Thomas O'Dorisio MD

The Patient’s Perspective, Josh Mailman

3rd Theranostics World Congress, The Patient's Perspective, Josh Mailman

Single-center Experience Over More Than a Decade Analyzing 1000 Neuroendocrine Neoplasm Patients Treated with Single- or Duo-Radionuclide Peptide Receptor Radionuclide Therapy, Harshad Kulkani, MD

3rd Theranostics World Congress, Harshad Kulkami, MD

68Ga-DOTA-Octreotate PET/CT and Outcomes of Peptide Receptor Radionuclide Therapy for Paediatric Patients with Refractory Metastatic Neuroblastoma, Michael Hofman, MD

3rd Theranostics World Congress, Michael Hofman MD, Neuroblastoma

Gallium Approval in the US: Background and Moving Forward

The US Experience with Imaging and Therapy, Ebrahim Delpassand, MD

3rd Theranostics World Congress, Ebrahim Delpassand, MD

The US Experience — Iowa, Yusuf Menda, MD

3rd Theranostics World Congress, Yusuf Menda MD

The US Experience — Vanderbilt, Ron Walker, MD

3rd Theranostics World Congress, Ron Walker MD

Pathway to Approval:  FDA Perspective, Dwaine Rieves, MD

3rd Theranostics World Congress, Dwaine Rieves MD

SNMMI Gallium Users Group: Moving Approval Forward in the US, Michael Graham, MD

3rd Theranostics World Congress, Michael Graham, MD

Panel Discussion:  Gallium Approval in the US, Drs. Richard Baum, Ebrahim Delpassand, Michael Graham, Yusuf Menda, Dwaine Rieves,  Ronald Walker

3rd Theranostics World Congress, Panel Discussion on Gallium Approval in the United States

How to Deliver Theranostics

PRRT and Theranostics in Children, Sue O’Dorisio, MD

 3rd Theranostics World Congress, Sue O'Dorisio, MD

PRRT + Chemotherapy = Peptide Receptor Chemoradionuclide Therapy (PRCRT), Michael Hofman, MD

3rd Theranostics World Congress, PRCRT, Michael Hofman, MD

Congress Highlights and Looking to the Future: Richard Baum, MD & Frank Roesch, MD

Closing Comments and Awards

Congratulations to Josh Mailman upon receiving the Service Recognition Award!!

3rd Theranostics World Congress, Josh Mailman, Award

Patient Session with Dr. Richard Baum, Dr. Eric Liu, Dr. Thomas O’Dorisio, and Dr. Edward Wolin, Moderated by Josh Mailman

3rd Theranostics World Congress, Patient Session with Physician Panel

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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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