Welcome to the INCA Special World NET Cancer Day Newsletter!
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INCA World NET Cancer Day 2018 Newsletter - November News Update

Highlight: World NET Cancer Day 2018 Around the Globe!


Over 12 million impressions across the major social media in just two weeks – this year INCA pulled off a NET Cancer Day campaign that did resonate massively. The global call for action #LetsTalkAboutNETs inspired followers and stirred attention around the world.

Over 100 000 Let's Talk about NETs cups were distributed in cafes, hospitals, and special events around the world with the help of INCA members and partners. Thousands edited their Facebook profile pictures adopting the NET Cancer Day frame to declare support. 

A.I.NET Vivere la Speranza Italy on World NET Cancer Day
APOZ Bulgaria on World NET Cancer Day
APTED France on World NET Cancer Day
Carcinoid Cancer Foundation USA on World NET Cancer Day 
CarciNor Nevroendokrin kreft Norway on World NET Cancer Day
CNETS Canada on World NET Cancer Day
CNETS India on World NET Cancer Day 
NET Patient Foundation UK on World NET Cancer Day
NET Patient Network Ireland on World NET Cancer Day
Netzwerk Neuroendokrine Tumoren (NeT) e. V. Germany on World NET Cancer Day
The Unicorn Foundation Australia on World NET Cancer Day
Vzw NET en MEN Kanker Belgium on World NET Cancer Day
NET Cancer Day Around the World
Medical News

INCA Makes the World Talk About NETs


This year #LetsTalkAbout NETs reached millions around the globe: INCA’s 2018 NET Cancer Day campaign culminated in the level of engagement and support reached.

The combined value of impressions across the three key social media platforms – Twitter, Facebook and Instagram – for the period November 1-15, 2018 is 12.2 million. As part of World NET Cancer Day (NCD) on November 10, INCA in collaboration with member organisations, medical institutions, partners, influencers, and the public, used the hashtag #letstalkaboutnets to help raise awareness around NETs. Twitter has shown to be the most active platform for @NetCancerDay with the hashtags #letstalkaboutnets and #netcancerday creating over 8.17 million and 7.1 million impressions, respectively throughout the campaign. Looking at the @NetCancerDay account, there has a been a significant 343% increase on impressions gained for @netcancerday, 238% increase on number of tweets sent out @netcancerday, and @netcancerday tweets were retweeted 406 times. On Facebook, the #LetsTalkAboutNets gained 3.1 million impressions, 45k post engagements (clicks, likes, shares, comments). A reach of 1.3 million was achieved, along with a total of 441 new page likes.

The 2018 NET Cancer Day campaign built on the findings of the Global Unmet Needs Initiative, promoting the multi-lingual resources, which are essential for the success of a global effort. INCA White Paper on Unmet Needs in the Global Patient Community and the full set of infographics and motion graphics illustrating its results were made available in 8 languages: EnglishChinese (Mandarin)GermanFrenchJapaneseItalianRussian and Spanish. The assessment of unmet needs in the global NET patient community was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member, and the translation of the White Paper and the visual resources was funded through the NETRF grant, as well as grants from Novartis, Ipsen and Pfizer.

In November INCA also redesigned its website to make it a user-friendly focal point of valuable resources for the NET community. The new look web platform was launched just before NET Cancer Day. To help spread the word about NETs and create more impact in a consistent manner, INCA developed a World NET Cancer Day Toolkit offering key messages and visual content, as well as useful tips on media engagement and social media communication. INCA members from around the world came together in a video collage promoting NET Cancer Day and the power or synergy, which can truly make a difference as we strive for earlier diagnosis, improved access and research this World NET Cancer Day. #letstalkaboutnets

NET Cancer Day Around the World

A.I.NET Vivere la Speranza Italy on World NET Cancer Day


November 9th, 10th and 11th - three days entirely dedicated to patients and their families, hosted by A.I.NET Vivere la Speranza in Montefalco, Italy. During all three days patients were able to engage with national and international experts, doctors and researchers. The meeting participants enjoyed the artistic performance of actress Barbara Amodio.

Carcinoid Cancer Foundation Talks About NETs


The Carcinoid Cancer Foundation contacts every Governor in the United States each year, requesting a proclamation in support of NET Cancer Day and raising awareness about neuroendocrine cancer. In 2018 CCF received proclamations and letters of support from 48 of the 50 Governors. CCF helped promote a wide variety of NET Cancer Day activities including conferences, a run/walk at a zoo, and a new song being premiered in honor of NET Cancer Day. CCF also shared a zebra-striped filter to add to social media profiles and promoted the Lets Talk About NETs campaign, including sending cups to individuals, medical facilities, and organizations hosting special events and conferences on NET Cancer Day. A NET Cancer Day e-newsletter was produced, informing the NET community of the wide variety of ways to participate in NET Cancer Day. The Foundation encouraged the community to download the Lets Talk About NETs toolkit, NET Cancer Day ribbon, and to participate in special events around the country. CCF NET Cancer Day Facebook post reached 64,560 people, had 4,531 Reactions, Likes, and Shares, and 423 comments on the post and on the shares. The Carcinoid Cancer Foundation also tweeted throughout the day and live tweeted part of the California NET Cancer Day conference and all of the Frankly Speaking about Cancer: Neuroendocrine and Carcinoid Tumors presentation in Illinois.

NET Cancer Day in Canada

CNETS Canada had another very successful NET Cancer Day in Canada. Volunteers distributed more than 5,000 “Let’s Talk About NETs” coffee cups, postcards, brochures & posters through partner locations & volunteers across Canada. NET patients also participated in smaller patient driven initiatives in local cities and towns. CNETS Canada published a NET Cancer Day eNewsletter to encourage people to get involved in NET awareness activities. Some hospitals also participated in NET awareness through their social media. CNETS Canada posted over 40 INCA NET awareness infographics through our mailing list, Facebook and Twitter, resulting in over 32,000 media impressions. To complete the NET Cancer Day awareness activities, Toronto’s CN Tower was lit up in zebra colours – black and white to recognize NET Cancer Day!

NET Patient Foundation Held Events Across the UK to Help Raise Awareness of Neuroendocrine Cancer This NET Cancer Day

Neuroendocrinologists of the Future
The NET Patient Foundation launched its Neuroendocrinologists of the Future campaign to help raise awareness of NETs at 14 different medical schools across the UK. In order to maintain expertise and excellence in care provision, the Neuroendocrinologists of the Future campaign is aimed at stimulating interest in the speciality of NETs. By raising awareness and providing up-to-date evidence based information, NPF hopes to encourage the next generation of doctors to explore this speciality and hopefully follow the current experts into practice.

NPF Coffee Morning
Around 50 coffee mornings took place across the UK to help raise awareness of NETs amongst local communities and to help NPF continue providing support to anyone affected by NETs.

Patient Conference
The NET Patient Foundation brought together members of specialist NET teams to share their knowledge of NETs and to help provide information, education and support to the Neuroendocrine Cancer community.

Black and White Ball
The NPF held a Black and White Ball for a night all about NETs!

"How to diagnose a Neuroendocrine Tumour"
The Freeman Hospital held an event for healthcare professionals to find out more about how to diagnose a Neuroendocrine Tumour. NPF Patient Support Manager, Nikie, attended the event as a guest speaker to help raise awareness of NETs and NPF’s services.

Watch the NET Patient Foundation NET Cancer Day video here.

Annual NET Patient Day in Ireland

The NET Patient Network (NPN) held its annual NET patient day in University College Cork, Ireland. The event was a great success and was attended by over 100 patients and family and friends. Expert speakers included Prof. Dermot O'Toole along with NET specialists from around Ireland. Prof Kjell Oberg was a special guest speaker and was given a standing ovation by the audience. NPN also engaged in a NET disease awareness campaign leading up to World NET Cancer Day on Nov 10th. This included articles in local papers featuring NET patients, some national paper articles and radio interviews. The core message of the campaign was advising NET patients to see a NET specialist and advising patients that there is a national centre of excellence for NETs in Dublin.

Pheo Para Alliance Launches New Patient-Focused Website to Coincide with NET Cancer Awareness Day

The world’s largest advocacy organization for one of the most misdiagnosed neuroendocrine tumors has launched a new website featuring much-needed information on diagnosis and treatment options for pheochromocytoma (pheo) and paraganglioma (para) patients.

Patient Highlights:

  • Patient Support Services & Partner Organizations
  • Updated Diagnostic & Treatment Information
  • Glossary of Terms

The new Pheo Para Alliance website, which officially launched November 10th to coincide with NET Cancer Awareness Day, also provides ample opportunities for the entire pheo para community to get engaged and support the Alliance’s global mission to advocate on behalf of its patients and spread awareness amongst medical professionals. 
Coming Soon! The Alliance is also making preparations to launch a new international Doctor Tracker and Community Forum on the site where patients can share information and experiences.

Unicorn Foundation Australia hosts Asia Pacific Neuroendocrine Tumor Society (APNETs) on November 9-11 in Melbourne

It was a great honour to play host to the 6th annual Asia Pacific Neuroendocrine Tumour Society (APNETs) meeting in Melbourne in November at the Melbourne Exhibition and Convention Centre (9th – 11th). APNETs, founded in 2013 by a group of healthcare professionals who recognized the need for the creation of a regional society dedicated to enhancing the care of patients with neuroendocrine tumours.
With close to 200 registrants representing over 19 countries, APNETS 2018 will go a long way in spreading and integrating NET research amongst the Asia-Pacific Region and beyond.

This year’s scientific program brought together experts from around the world in all disciplines of NET patient care, who presented the most up to date research, clinical trials, guidelines, treatment options and diagnostics. It was unique that every one of the invited speakers accepted the invitation, and The Unicorn Foundation is so grateful to the experts who shared their knowledge over the three days, finishing with the patient symposium. It was a real pleasure and honour to have leading experts including Prof Dermot O’Toole the Chair of the European Neuroendocrine Tumor Society (ENETs), the President of APNETs Dr Harjit Singh, Dr Anita Borges (India), Dr Ben Lawrence (New Zealand), Prof James Yao (USA), Prof Halfden Sorbye (Norway), Prof Anthony Gill AM (Australia) and Dr Simona Glasberg (Israel), to name but a few. Below is a snapshot of the program with more details on what was presented to be found on the Unicorn Foundation Australia website

Simone Leyden presented an oral presentation as part of the “What Patients Want To Know” – Unmet needs in the global NETs community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals. This was really well received by the audience of health care professionals and sparked discussions that continued throughout the meeting.
World NET Cancer Day on Saturday November 10 (the second day of the meeting) started with an early walk, “NETwalk”. It was great to see so many of the attendees of APNETs as well as patients and families join in for a leisurely walk around Melbourne, a great way to start day two and World NET cancer Day.
Special thanks to Prof Rod Hicks and Dr Grace Kong of Peter MacCallum Cancer Centre, who did an exemplary job with the scientific program.
APNETs above all, was an incredible opportunity to network, share ideas and motivate as we all strive to improve NET patient outcomes. We look forward to the many projects inspired by the meeting and working together further in the future.
Day One – Why Should I Suspect NETs?
Prof James Yao (MD Anderson Cancer Centre, United States)
An update on the evolving epidemiology, biology and prognosis of neuroendocrine neoplasms
Dr Simona Glasberg (Hadassah-Hebrew University Medical Centre, Israel)
Endocrine Features of NETs
Day One – Diagnosis of NETs
Prof Michael Hofman (Peter MacCallum Cancer Centre, Australia)
Molecular imaging in diagnosis and treatment planning
Day One – What patients want to know?
Prof Michael Jefford (Peter MacCallum Cancer Centre, Australia)
Survivorship considerations for people with NETs
Dr Erin Kennedy (Peter MacCallum Cancer Centre, Australia)
Nutritional aspects, including short gut syndrome

Run for the Stripes 2018

Nearly 800 runners and walkers came together at the Philadelphia Zoo for this year's Run For the Stripes to raise awareness and funds for research for neuroendocrine (NET) cancers. Over $55,000 were raised and all funds will go directly to the University of Pennsylvania Neuroendocrine Cancer Research program, funding research that could lead to new treatments and ultimately a cure for Neuroendocrine Cancer. 

Black or White Festival in Poland

This year a Black or White festival was organized in Krakow, Poland to mark NET Cancer Day. The festival has been initiated by Dr. Anna Sowa-Staszczak - Endocrinologist and Nuclear Medicine Specialist from Krakow University Hospital, who treats patients with NET tumors.

Musician Premieres New Song in Honor of NET Cancer Day 2018

In honor of NET Cancer Day 2018 Giovanna Joyce Imbesi is premiering a new digital song she has written and recorded, “Give Me Peace,” featuring vocalist Lettrice Lawrence. According to Giovanna, the song “honors those who have passed and celebrates those who are enjoying another year of life.  Music is medicine.” Giovanna and Lettrice talk about “Give Me Peace” in this video.

Click here to listen to the beautiful new song.

NET Italy: Patient & Physician Meeting on NET Cancer Day 2018

On NET Cancer 2018 NET Italy shared a day with patients and doctors in the ENETS Center of Excellence Sant’Andrea Hospital in Rome. NET patients and caregivers, and a diverse group of doctors representing the dedicated multidisciplinary team were all part of the event, where patients had the chance to freely ask questions and clarify doubts.
NET Italy presented their project involving a number of ECM Meetings on rare cancers dedicated to family doctors, where expert NET oncologists informed about epidemiology and day-to-day routine. The course was extended to include two other types of cancer - sarcoma and head-neck cancers, since interest was poor in the beginning. This network approach has shown good physician engagement and effective results - new diagnosis have been made thanks to the suspicion of doctors who took part in the meetings.

Medical  News

Inherited Risk Factors for NETs

Many patients and families facing a neuroendocrine tumor (NET) diagnosis wonder if they inherited the disease from their parents or if they can pass it down to their children.
Most cases of NETs are not associated with hereditary risk factors. Researchers estimate that inherited factors may be associated in 17% of PNETs and 25% of pheochromocytomas and paragangliomas. Other rates vary by primary site and subtypes of tumors.
Knowing you have an inherited genetic risk factor won’t always have an impact on your treatment plan, but it can affect a surveillance plan. If a genetic risk factor is confirmed, your doctor may order additional testing on a regular basis to monitor for other associated risks.
Justin Annes, MD, PhD, Stanford University, is a physician-scientist with a long-standing interest in hereditary neuroendocrine tumors. He gave a talk on the subject at a NETRF patient and caregiver conference. View his presentation here.
How do you know if you have an inherited mutation?
The route to a clinical diagnosis for an inherited genetic mutation varies. In some cases, the presence of two or more associated medical conditions or syndromes can meet the criteria. A patient’s medical history, as well as their family’s medical history, is part of the evaluation process. Having a first-degree relative with a known mutation also plays an important role in establishing a clinical diagnosis. 
If a genetic mutation is suspected or known, your doctor may conduct a clinical evaluation that could include:

  • Blood or urine tests
  • Imaging test
  • Gene tests

There are many different types of gene tests using a range of technology. The types of gene testing kits advertised on TV or sold in the drug store will probably not help someone learn about their risk factors for NETs.  The type of genetic test your doctor would order would screen for a specific set of mutations, which may not be included on the panels of the tests available commercially.

More information from NETRF.

Safety and Efficacy of Combining Capecitabine and Temozolomide (CAPTEM) to Treat Advanced Neuroendocrine Neoplasms

"Safety and Efficacy of Combining Capecitabine and Temozolomide (CAPTEM) to Treat Advanced Neuroendocrine Neoplasms" abstract was published in Medicine in October 2018 (vol. 97, issue 41).

Abstract text:
"Retrospective studies have suggested that capecitabine combined with temozolomide (CAPTEM) is effective for treating patients with advanced neuroendocrine neoplasms (NENs); however, the efficacy and safety of this regimen needs to be verified by high-quality evidence or results of randomized controlled trials.

We carried out a meta-analysis to evaluate the safety and effectiveness of a CAPTEM protocol for patients with advanced NENs. Systematic electronic literature searches were conducted using PubMed, EMBASE, and the Cochrane Library, and among meeting abstracts of the American Society of Clinical Oncology, European Society for Medical Oncology, European Neuroendocrine Tumor Society, and North American Neuroendocrine Tumor Society, up to June 30, 2017. We selected studies describing CAPTEM regimens for treating advanced NENs and reported on tumor response and/or toxicities according to clear World Health Organization (WHO) grading of patients. Three reviewers independently and repeatedly identified studies, extracted data, and assessed the quality of the literature. A single-proportion meta-analysis was applied to included articles.

Fifteen studies with a total of 384 individuals were included. Medium overall survival in most studies was more than 12 months, whereas medium progression-free survival was similar or slightly higher than that in studies using other treatment regimes. Disease control rate of CAPTEM administration for patients with NENs was 72.89% (95% confidence interval, 64.04–81.73%; I 2 = 82.4%; P < .01). WHO grade 3 to 4 toxicities, such as thrombocytopenia (3.36%), neutropenia (0.69%), lymphopenia (0.65%), anemia (0.59%), mucositis (0.57%), fatigue (0.54%), diarrhea (0.49%), nausea (0.39%), and transaminase elevation (0.13%) were reported in the trials included.

CAPTEM is effective and relatively safe for treating patients with advanced NENs."

Read the full article here.

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