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INCA Monthly Newsletter - September 2017 News Update

Event highlight: ISP 2017 in Australia 

Patients and medical experts are gathered at 5th International Symposium on Phaeochromocytoma and Paraganglioma (ISP 2017) in Sydney, Australia, from 30 August to 2 September 2017. ISP 2017 showcases new therapeutic approaches, delivers new insights and more hope for patients carrying the genetic susceptibility to pheo-paratumours. INCA members Unicorn Foundation Australia, Pheo Para Troopers and AMEND join forces in staging a patients symposium to share new insights and better options for disease management. More information about ISP 2017   

INCA Members' News
INCA Member in Focus: The Neuroendocrine Tumor Research Foundation (NETRF), USA
Medical News

INCA on Meaningful Patient Advocacy – at a prIME Masterclass in NETs on NET Cancer Day 

Teodora Kolarova, INCA Executive Director was invited to speak about Meaningful Patient Advocacy at the prIME Masterclass in Neuroendocrine Tumours to be held on 10-11 November in Amsterdam, the Netherlands (venue: De Koepelkerk at the Renaissance Amsterdam Hotel). The Masterclass, co-chaired by Dermot O’Toole and Philippe Ruszniewski, will engage experts in the field of neuroendocrine tumors (NETs) in a highly interactive 1.5-day live meeting. This educational activity will provide a comprehensive update on the management of NETs to European medical oncologists, endocrinologists, gastroenterologists, nuclear medicine specialists, and other healthcare providers involved in the NET patient journey. 

Read more on INCA website
INCA Members' News

CNETS Canada announces 2017 NET Research Grant recipients

The CNETS Canada  Neuroendocrine Tumour Research Grant provides each calendar year grant-in-aid for two projects up to a maximum of $40,000 per project.  The NET research funding priorities were determined through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board (SMAB).   To be eligible for the 2017 NET Research Grant, it was determined that the project must be a clinical trial or a clinical or fundamental research project (including animal or cellular models) to examine issues relevant for the diagnosis and treatment of Neuroendocrine tumors (NETs).  

The two 2017 Neuroendocrine Tumour Research Grant Recipients are focusing on the areas of lung NETs and immunotherapy for high grade NEC patients.  Dr. Philippe Joubert from Quebec Heart & Lung Institute (IUCPQ) - Université Laval, will work on “Comprehensive clinical and molecular characterization of diffuse idiopathic pulmonary neuroendocrine cells hyperplasia (DIPNECH)” .  The second recipient is Dr. Simron Singh from Sunnybrook Health Sciences Centre, who will focus on “Predicting response to immunotherapy in neuroendocrine carcinoma”.  

More information on INCA website
More information from CNETS Canada

CNETS India informs Alpha PRRT is now available for NET patients in India

CNETS India team is happy to share that two nuclear medicine centres in India have started Alpha PRRT for NET patients.  World over, many clinical trials have established the benefit of PRRT for metastatic NETs. Alpha PRRT uses the more powerful alpha particle emitting agents, Actinium 225 or Bismuth 213, in place of Lutetium 177 or Yttrium 90, which are the commonly used beta emitters for PRRT, to target the somatostatin receptors expressed by the tumor cells. According to CNETS India, Alpha PRRT holds higher energy leading to higher efficacy and lower toxicity to normal tissues and hence lesser side effects as compared to the currently available Lu177 based PRRT. Currently Alpha PRRT is already available at two superspecialty hospitals in Delhi and Bengaluru in North and South India, respectively. 

More information from CNETS India


NET Patient Foundation launches the first NET retreat for 10-year anniversary

After 10 years of the NET Patient Foundation UK and having received the most amazing support from the NET community, the team wanted to give a little back to those who have to live with this disease and its unpredictable and complex nature. 

NET Patient Foundation teamed up with Penny Brohn Cancer Care and hired their beautiful Georgian building on the outskirts of Bristol, England for the weekend around NET Cancer Day. They have asked a number of professionals to help run sessions on various topics including; mindfulness, living with disease, nutrition and food, and also a session where questions can be asked to experts in oncology, gastrointestinal medicine, dietetics, surgery and NET nursing. 

We wanted to offer something for those who may not have a NET but who support loved ones who have…so we decided to run the first NET Retreat”, commented on the 10-year anniversary idea NET Patient Foundation team.  “We truly hope this will be a time to build friendships, a time to focus on areas of concern, a time to ask questions but ultimately a time to socialise, relax and be looked after.”

The organization will be producing a short video following the event and hopes to be able to run another NET retreat very soon.

More information from NET Patient Foundation

Nutrition tips for NET patients from NET Research Foundation conference

What, when, and how you eat can help to improve your response to cancer treatment and help ease burdensome symptoms and side effects - according to University of California, San Francisco, U.S., Dietitian Greta Macaire, MA, RD, CSO, consuming the proper nutrients can mean fewer complications, faster recovery, and improved strength and energy. She presented a talk at a Neuroendocrine Tumor Research Foundation (NETRF) Patient Education Conference at Stanford University. It can be challenging to prepare nutritious meals and snacks when a NET patient feels tired and weak. Your sense of taste may have changed. You may also be coping with nausea and/or diarrhea. Greta Macaire talk offered also advice on online resources featuring recipes about healthy eating during cancer care as well as a number of cookbooks.  

More information on INCA website
More information from NETRF

Pheo Para Troopers, USA, invite pheo/para patients for pre-screening for inclusion in clinical trial

In the end of July 2017, Pheo Para Troppers, USA, announced a clinical research group at Yale Medical School anticipates beginning a clinical trial in the near future with pheo/para patients to test a drug already approved for use in multiple types of cancer for efficacy in our patient population.

If patients are interested in learning more about this trial and being pre-screened for potential inclusion in this study, they can contact  Dr. Ranjit Bindra at:

More information from Pheo Para Troopers

Australian Federal Health Department supports patients living with NET by a grant to Unicorn Foundation

In the end of July 2017, Australian Federal Health Minister Greg Hunt presented the Unicorn Foundation co-founder and CEO Simone Leyden with a grant to build the resources for support and education for patients and medical community.  The event included a morning tea with NET cancer patients to discuss and recognize the need for greater resources in this area.  The grant is for a total of $280,000 over four years. 

The Unicorn Foundation plans to use the funds to build on their vital online resources such as webinars, continue the successful patient forums nationwide, continue critical support services, maintain their database system, develop a disease specific patient friendly app that will help develop research priorities, build a network of interested Health Care Professionals and provide educational materials, among other projects.

More information from Unicorn Foundation Australia

Unicorn Foundation New Zealand campaigns
for government funding of PRRT for NET patients 

Unicorn Foundation New Zealand and eight more cancer local organizations presented a manifesto to the Minister of Health, politicians and their health advisors in a campaign to encourage all political parties to work with the NGOS to help Kiwis receive improved cancer care, funding and access to treatment no matter where one lives in New Zealand. Almost 50 New Zealanders with neuroendocrine cancer are currently raising tens of thousands of dollars to pay for treatment in Australia because the life-prolonging treatment isn't available locally.

Unicorn Foundation New Zealand along with patients are petitioning Pharmac, the New Zealand government agency that decides which pharmaceuticals to publicly fund in New Zealand, to consider funding specialist Peptide Receptor Radionuclide Therapy (PRRT) for NET patients.  2000 signed letters were delivered along with the Consumer Submission made by Unicorn Foundation New Zealand.
Siobhan Conroy, CEO of Unicorn Foundation New Zealand, said to local media: “About 2000 New Zealanders have neuroendocrine cancers but only a fraction need PRRT, and it was a relatively cheap treatment for Pharmac to support. It gives patients extended life and quality life. Patients can go back to work quite often. It is being around to see key milestones in a patient's life - that's absolutely massive." Budget 2017 includes a $60m boost to Pharmac to allow greater access to medicines. Outcome of active lobbying effort of local cancer organizations can be expected in October.  

More information from Unicorn Foundation New Zealand

INCA Member in Focus

The Neuroendocrine Tumor Research Foundation (NETRF), USA

Interview with Ron Hollander, Executive Director

When was the organization founded and how?
We were founded in 2005 as the Caring for Carcinoid Foundation by Nancy Lindholm, who was diagnosed with neuroendocrine cancer at 29 years old. She lived with her disease for many years, and grew the organization into a leading funder of NET research. To reflect the expanding scope and focus of our work, the Foundation changed its name in 2015 to the Neuroendocrine Tumor Research Foundation. 

Could you share some highlights of projects and your activity?
NETRF is focused on NET research funding, resulting in tangible advances in basic, translational, and clinical research. To achieve that goal, we work to attract the best researchers, giving hope to patients, and inspiring loyal supporters.  In addition to the dozens of dedicated NET researchers we have supported over the years, we are proud to have recruited 11 accomplished researchers from other related fields to join our cause and focus on research to improve treatments and find cures for NETS. 

Since 2005, we have awarded more than $18 million in large-scale, multi-year research grants to leading scientists at renowned research institutions in the U.S. and abroad. In 2017 alone, we awarded more than $4 million USD to fund transformative research to expand our understanding of the disease and inform personalized treatment options.

NETRF also champions the empowerment of neuroendocrine cancer patients worldwide through education about their disease and resources for care to improve quality of life through our:
  • Free patient education conferences, which are also available internationally as livestream events and online videos
  • Web-based information about NETs
  • Monthly newsletter and social media channels.
The Foundation has also worked closely with INCA over the last year during my tenure as President. NETRF funded a portion of INCA’s unmet needs survey and helped support the joint INCA/ENETs Summit in Barcelona.
How do you see your future role?
NETRF continues to expand its international role. We are actively recruiting grant proposals from all countries in pursuit of our research goals: 
  • Increasing the quality and quantity of NET research
  • Attracting new researchers to the field
  • Creating NET research models for scientists to use for experiments
  • Adapting other cancer diagnostics to NETs
  • Testing existing therapies for precision medicine.
At the same time, we are committed to keeping the patient community connected to advances in the field, working to understand patient needs, and giving voice to those needs as part of the prioritization of research resources.  We are particularly interested in the INCA work to discover unmet needs in research and to work closely with our global colleagues to fill those gaps.

Visit NETRF website
Medical  News

Videos from the NET Session at the SNMMI Patient Education Day

In June 2017, the Society of Nuclear Medicine and Molecular Imaging held its annual Patient Education Day at their Annual meeting in Denver, USA. The event featured three thoughtful presentations from NET clinicians about the state of NET Management and Nuclear Imaging. Presentations were about Nuclear Medicine for NETs Patients,   PRRT from a Worldview, NET Management in the era of new options.  NorCal CarciNET Community President, Josh Mailman was also featured on SNMMI TV talking about the Future of Nuclear Medicine.

More information from NorCal CarciNET

Fast-track surgery boosts success rate for pancreatic cancer patients

A potential breakthrough was made by researchers at The University Hospitals Birmingham, which could have a significant impact on pancreatic cancer survival rates in the UK.  As part of the pilot, pancreatic cancer patients with jaundice, who had an operable tumour on their pancreas, were fast-tracked to surgery. This cut the average time for patients to have surgery from two months to just over two weeks. 
The research, which was published in the HPB Journal in August 2017, also found that £3,200 per patient was saved by cutting out treatment for the symptom of jaundice before surgery, as well as reducing complications and hospital readmissions after surgery. It was also revealed that the pilot treatment increased the number of patients whose surgery was successful by 22%.

This is a significant study for many reasons,” says Ali Stunt, founder and chief executive at Pancreatic Cancer Action.  “Current clinical guidance advises against performing surgery on patients with jaundice, due to the risk of complications. However, this study found that the chance of having complications following fast-track surgery are no greater than surgery following treatment for jaundice.”

Read the research in HPB Journal

More information from Pancreatic Cancer Action

Survey on Out-of-Pocket Costs, Financial Distress, and Underinsurance in Cancer Care

In August 2017, a new cross-sectional survey study on Out-of-Pocket Costs, Financial Distress, and Underinsurance in Cancer Care was published in JAMA Oncology Journal.  The research team made the survey with the approval of Duke University Medical Center.  The article points out at the results that show more than one-third of insured cancer patients receiving anticancer therapy faced out-of-pocket costs that were greater than expected, and patients with the most distress were underinsured paying almost one-third of their income in health care-related costs. The financial burden of cancer treatment is a well-established concern. Owing to cost sharing, even insured patients face financial burden and are at risk for worsened quality of life and increased mortality. Underinsured patients (those spending more than 10% of their income on health care costs) are a growing population and are at risk given the looming heath policy and coverage changes on the horizon. In this setting, the survey argues little is known about what expectations patients have regarding those costs and how those cost expectations might impact decision making.

Scientists deliver knock-out blow to multiple cancers

Targeting healthy cells that have been hijacked by cancer cells could help treat many different types of the disease, according to a research funded by Cancer Research UK, and published in the Journal of the National Cancer Institute in August 2017.  Scientists found that targeting an enzyme known as NOX4 stops the action of a type of cell called cancer associated fibroblasts (CAFs), reducing the size of tumours in mice by up to 50 per cent. Fibroblasts are healthy cells whose role is to hold different types of organs together. When they are hijacked by cancer cells, they become CAFs and are known to help tumours grow, spread and evade therapy.  Until now, attempts to target them have proved unsuccessful. For the first time, researchers identified that NOX4 is needed for CAFs to form and help tumours grow in many cancer types. But they could stop this happening by blocking NOX4 using a drug that is being developed to treat a condition called organ fibrosis.

These findings could form the basis for new treatments and help make cancers respond better to existing drugs. Cancer Research UK is now funding the Southampton scientists to see if this approach improves treatments like immunotherapy and chemotherapy to make them more effective.

Dr Áine McCarthy, Cancer Research UK’s senior science information officer, said: “Some cancers are incredibly difficult to treat, and can use the body’s own cells to help them grow, evade treatment and spread around the body. Researchers have been trying to unlock the secrets behind this for many years and this study is a big step forward in understanding how some cancers achieve this.”

More information from Cancer Research UK
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