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INCA Monthly Newsletter - January 2018 News Update

At the Second Patient-Physician Symposium INCA and Medical Leaders Will Discuss a Roadmap of Actions to Address Unmet Needs of NET Patients


INCA is getting ready for the second Patient-Physician Symposium, entitled Unmet Needs of NET Patients: From Identification to Action to be held as part of the scientific program of the 15th ENETS Annual Conference, in Barcelona (7-9 March 2018).

The Symposium is a joint effort by NET patient and medical leaders to identify and address issues that impede optimal care and research. It will feature an overview of NET Cancer Awareness Day and the launch of INCA White Paper on Unmet Needs in NETs by Simone Leyden, and a rich selection of perspectives on the information NET patients need to have and the benefits of patient involvement in research, offered by NET patients, expert clinicians and NET nurse specialists.

INCA welcomes everyone who will be at the 15th Annual ENETS Conference and is interested in the topics above, to join the INCA-ENETS Symposium on March 9, at 9:35 am in Meeting Room 111 at CCIB.
The preliminary program of the ENETS Conference can be found here.
INCA Members' News
Medical News

 INCA to be Represented on the ECCO Patient Advisory Committee

European Cancer Organisation (ECCO) invited INCA to nominate a representative to serve on the ECCO Patient Advisory Committee (PAC) for the next mandate (February 1, 2018 -  Feb 1, 2020). 
Being committed to endorse patient interest agenda, ECCO created the Patient Advisory Committee (PAC) 2008, to provide European patient organizations and bodies involved in patient care with a platform to express their expectations in solidarity with the professional organizations and afford ECCO direct insight into the issues and challenges faced by cancer patients. 

The ECCO PAC is composed to reflect the breadth of predominantly European cancer patient advocacy groups and may include other European public health patient advocacy groups who have a substantive interest in cancer while ensuring a majority of the seats assigned to European cancer patient advocacy groups. International cancer patient advocacy groups will be considered when there is no European equivalent covering the same disease area. 
This invitation certainly offers a valuable opportunity for INCA to help ECCO optimize patient-centered activities, as well as place NET cancer patients' specific interests higher on the cancer community agenda. The INCA Board appointed INCA Executive Director, Teodora Kolarova to serve as a representative for INCA on the ECCO Patient Advisory Committee. More infomation can be found on ECCO website.

INCA Shares Unmet Needs Findings with Patient Organizations Tackling Rare Cancers Challenges 


From the 2nd to the 4th of December 2017, Rare Cancers Europe (RCE), the European Society for Medical Oncology (ESMO) and the European School of Oncology (ESO organised) a specific training course for rare cancers patient advocates. The event brought together in Milan patient advocates from across Europe, including Turkey and Russia, to exchange views and ideas with clinicians and researchers, involved in the ESO-ESMO-RCE Clinical Update on Rare Cancers event running in parallel and on the same venue. 

The last session on Saturday offered inspiration from several rare disease groups on what patients can do to have an impact and bring about change in their community. Teodora Kolarova presented INCA recent experience with the White Paper on Unmet Needs for NET patients, which has used tools such as surveys to produce instrumental data from patients and healthcare professionals. The audience was captured by the INCA infographics and motion graphics campaign, which reflected patient organizations' ability to be active across all media. A number of groups looking to raise the awareness about their disease recognized NET Cancer Day as a benchmark achievement.

All presentations from the training course have been published on Oncology Pro and are also accessible via the RCE website

INCA Members' News

AMEND Marks its 15th Anniversary


2018 marks the 15th year of AMEND’s work to provide information resources and support services to families affected by multiple endocrine neoplasia and associated tumours and disorders.  Therefore there is plenty going on this year, such a few highlights:
•    AMEND members will be taking part in 2 major surveys.  The European Multiple Endocrine Neoplasia Alliance (EMENA), of which AMEND is a member, will be asking patients with MEN to tell us about the state of care for MEN within their EEA countries.  The other will be a survey done in collaboration with the NET Patient Foundation as part of our Project Research Road Trip.  The survey aims to get a better idea of the thoughts of patients with endocrine and neuroendocrine tumours in the UK with regard to current and future research.
•     AMEND was delighted to work with Dutch patient group, Belangengroep MEN, to develop Dutch translations of our kids’ cartoons on MEN1 and MEN2.  They can be viewed here.  If any other group is interested in adapting and translating the cartoons for its patient communities, please feel free to get in touch with Jo Grey directly to discuss Licence fee and editing costs.
•     AMEND is launching a brand new website this month at  The new site better reflects AMEND’s strong branding, is much more inviting and most importantly, more engaging for younger people.  Already launched is AMEND’s latest patient information resource; ‘Working with your Medical Team’.  This new title explains the composition and roles of the MDT and Centres of Expertise, and gives helpful tips on making the most of hospital appointments and communicating with medical professionals. It is free to download from the website.

Every Day is NET Cancer Day: APTED France Gathered Patients and Physicians in Nantes


On 26th January, 2018, APTED held a meeting with patients and healthcare professionals in Nantes, France. The meeting was organized in partnership with Renaten, GTE (Groupes d'étude des tumeurs endocrines), Central University Hospital of Nantes and the Central University Hospital of Angers. 
Some of the topics under discussion covered: 
•    surgical modalities in Pancreatic NETs: immediate or delayed surgery. When? Why?
•    the multi-disciplinary consultation meetings; 
•    What to do when the primary tumor is not identified?
•    carcinoid heart disease.

More from APTED.

CNETS Canada Launches a Call for Applications for the 2018 NET Research Grants on    February 15


CNETS Canada has lots of exciting plans for 2018 in keeping with its priorities to provide support, education and awareness for Canadians on all aspects of Neuroendocrine Tumours (NETs). 

Fundraising events continue to be critical for CNETS Canada to be able to support research initiatives specific to neuroendocrine cancer. For 2018 CNETS Canada is participating in 4 major fundraisers. The NET patient community has continually demonstrated a strong commitment to supporting CNETS Canada’s fundraising efforts. Each year, research funding priorities are determined through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board. The past recipients were: 2016 NET Research Grant Recipients, 2017 NET Research Grant Recipients. On February 15, CNETS Canada will launch a call for applications for the 2018 NET Research Grants. The 2018 Canadian NET Research Grants Recipients will be announced in July 2018.

NET Patient Foundation's Data Collection Project Shows Increase in Incidence of NETs throughout the UK


NET Patient Foundation shared some of their data collection project within the UKINETs community in December 2017 illustrating the increase in incidence of NETs throughout the UK. 

Historically the incidence and prevalence of neuroendocrine tumours (NETs) has been difficult to establish due to issues with disease coding and data collection. Studies by Ellis et al in 2006 estimated the incidence of gastroenteropancreatic neuroendocrine tumours (GEP NETs) to be 1.3 per 100,000 per year (incidence hereafter given as cases per 100,000). However, the SEER USA data suggests a four-fold higher incidence, and prevalence of 35 per 100,000. This study aimed to identify the incidence and prevalence of NETs over a ten-year period utilising the Public Health England (PHE) population-based cancer registry. This study has clearly demonstrated that incidence of NETs in England is significantly higher than previously reported. The data demonstrate similar incidence and prevalence rates to those reported in the SEER database. Importantly, it highlights that colorectal and lung NETs are  the most common primary sites.

More from NET Patient Foundation.

NET Research Foundation Supports a Project for Understanding and Treating NETs: In the Form of Laboratory Mini-Organs

Will the ability of a Dutch molecular geneticist to build miniature human organs in a Petri dish solve a decade’s old problem in NET research? How the tiniest laboratory replicas of your small intestine might help scientists run a dress rehearsal to see if your next treatment will work.  

Researchers use laboratory models to understand cancer cells and to test new treatments. But it has been difficult to produce laboratory models for neuroendocrine tumors. One reason is that the tumors are widely different from one another (called heterogenous). The slow growth of these cells also serves as a major obstacle in conducting efficient and accurate laboratory experiments.  For these reasons, there are only a few preclinical models available to study NET treatments.

NETRF has been involved in the quest to develop a reliable laboratory model for more than a decade. This void is a major obstacle in moving research forward, and it sets NETs apart from other cancer types in being able to achieve progress. “Being able to create stable and reliable intestinal NET organoids from tumor tissues, that are able to expand indefinitely, will be a major breakthrough in the field of neuroendocrine cancers,” said Effie Tzameli, PhD, NETRF director of research. “For the first time, we will have a precious laboratory tool to use for different types of experimentation.”

More from NETRF.

PRRT Trials for Pheo/Para Patients Have Begun at the National Cancer Institute in
Washington, D.C.

The  Pheo Para Alliance announced that PRRT trials for pheo/para patients have begun at the National Cancer Institute, a division of the National Institutes of Health in Washington, D.C. More information on this important clinical trial can be found here

The alliance, which was formed by the merger of the Pheo Para Alliance and the Pheo Para Troopers into a single organization, has chosen patient advocacy for its major focus.

That intention was formally announced at ISP 2017 in Sydney, Australia (30 August-3 September 2017). The Pheo Para Alliance - a silver-level sponsor of the event, has begun posting videos of conference presentations on its website.


The Unicorn Foundation Australia to Host the 6th Annual APNETS Meeting

The Unicorn Foundation looks forward to hosting the 6th Annual Meeting of the Asia Pacific Neuroendocrine Tumor Society (APNETs) taking place on 9-11 November 2018 at Melbourne Convention and Exhibition Centre. Due to the massive success of the 4th World Theranostics Congress in 2016, an international scientific meeting is to be convened by a patient organisation, which is noteworthy.
The scientific program's topics include:
•    When should I suspect a NET?
•    Endocrine features of Neuroendocrine Tumors
•    Familial NETs
•    What patients want to know? – including presentation on  INCA Unmet Needs White Paper findings
•    Medical management of low grade NETs


Speakers from Europe, United States, Norway, NZ, India, Malaysia and Australia will feature in the program, which you can view here.
Registration and abstract submission is now open.

Elke Claus from VZW NET & MEN Kanker, Belgium: I Hope That I Can Help Others Be Stonger

Elke Claus, a passionate member of VZW NET & MEN Kanker, Belgium, shares her story in the respected magazine “allesoverkanker” ( everything about cancer), which is an initiative of the “Kom op tegen Kanker” (stand up against cancer) national Flemish organization. "I am hoping that my story will help others be stronger and get though this more easily if that's ever possible."

You can normally only die once", says Elke, who is a mother of 3 brave boys, "But I will have to die twice."  She and her husband Steven had to cope with two quite different experiences associated with two different cancer diagnoses. 

Read more here.

Medical  News

Stanford University NET Fellowship

Stanford University School of Medicine has established a new one-year Neuroendocrine Tumor (NET) Fellowship under the direction of NANETS Board Member, Dr. Pamela Kunz. The increasing incidence and prevalence of NET disease combined with the complex multidisciplinary care required by NET patients, Stanford University developed this focused fellowship program to fill a need.

The goals of the fellowship are:
•    To acquire a thorough knowledge base of basic and applied medical sciences that pertain to NETs and to be able to apply this knowledge when caring for NET patients from diagnosis to developing tailored treatment plans.
•    To gain experience in the clinical care of NET patients and an understanding of when to involve specialty consultants.
•    To understand the emerging field of survivorship as it applies to NETs as a model for chronic cancer.
•    To gain skills in clinical research related to NET patients including clinical trial design and conduct, management of a NET Database, and apply these skills to an independent clinical or translational research project.


FDA Approves New Treatment for Certain Digestive Tract Cancers

The U.S. Food and Drug Administration today approved  lutetium Lu 177 dotatate for the treatment of a type of cancer that affects the pancreas or gastrointestinal tract called gastroenteropancreatic neuroendocrine tumors (GEP-NETs). This is the first time a radioactive drug, or radiopharmaceutical, has been approved for the treatment of GEP-NETs. Lutetium Lu 177 dotatate is indicated for adult patients with somatostatin receptor-positive GEP-NETs.

“GEP-NETs are a rare group of cancers with limited treatment options after initial therapy fails to keep the cancer from growing,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “This approval provides another treatment choice for patients with these rare cancers. It also demonstrates how the FDA may consider data from therapies that are used in an expanded access program to support approval for a new treatment.”

GEP-NETs can be present in the pancreas and in different parts of the gastrointestinal tract such as the stomach, intestines, colon and rectum. It is estimated that approximately one out of 27,000 people are diagnosed with GEP-NETs per year.
Lutetium Lu 177 dotatate is a radioactive drug that works by binding to a part of a cell called a somatostatin receptor, which may be present on certain tumors. After binding to the receptor, the drug enters the cell allowing radiation to cause damage to the tumor cells.

The approval of lutetium Lu 177 dotatate was supported by two studies. The first was a randomized clinical trial in 229 patients with a certain type of advanced somatostatin receptor-positive GEP-NET. Patients in the trial either received lutetium Lu 177 dotatate in combination with the drug octreotide or octreotide alone. The study measured the length of time the tumors did not grow after treatment (progression-free survival). Progression-free survival was longer for patients taking lutetium Lu 177 dotatate with octreotide compared to patients who received octreotide alone. This means the risk of tumor growth or patient death was lower for patients who received lutetium Lu 177 dotatate with octreotide compared to that of patients who received only octreotide.

The second study was based on data from 1,214 patients with somatostatin receptor-positive tumors, including GEP-NETS, who received lutetium Lu 177 dotatate at a single site in the Netherlands. Complete or partial tumor shrinkage was reported in 16 percent of a subset of 360 patients with GEP-NETs who were evaluated for response by the FDA. Patients initially enrolled in the study received lutetium Lu 177 dotatate as part of an expanded access program. Expanded access is a way for patients with serious or immediately life-threatening diseases or conditions who lack therapeutic alternatives to gain access to investigational drugs for treatment use.

Lutetium Lu 177 dotatate was granted Priority Review, under which the FDA’s goal is to take action on an application within six months where the agency determines that the drug, if approved, would significantly improve the safety or effectiveness of treating, diagnosing or preventing a serious condition. lutetium Lu 177 dotatate also received Orphan Drug designation, which provides incentives to assist and encourage the development of drugs for rare diseases.

Read more at FDA website.

QUEBEC Lists Everolimus for NETs of Gastrointestinal or Lung Origin


We are very pleased to announce that Quebec has listed Everolimus  for the treatment of non-functional neuroendocrine tumors of the digestive tract or lung  effective December 15, 2017 as Médicament d’exception with the following criteria:
For the treatment of non-functional, well-differentiated neuroendocrine tumors of the gastrointestinal tract or lung, unresectable, advanced or metastatic, in persons  whose illness has progressed in the previous 6 month and  whose performance status according to the ECOG is 0 to 1.

More details on the established reimbursement and renewal criteria are available with the new formulary update available on the RAMQ website

The template for the Medicament d’Exception request specific to Everolimus has been published accordingly and can also be found here.

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