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INCA Monthly Newsletter - October 2017 News Update

Highlight: INCA at ESMO 2017 - the must-go forum in the cancer world! 

ESMO 2017, taking place from 8th to 12th September in Madrid, Spain, represented four days of animated debates on the future of oncology with the participation of INCA. A record number of abstracts was submitted – 1 736 abstracts were selected for presentations. Nearly 24 000 attendees and 482 clinical trials were discussed in 192 sessions with 163 Phase-3 studies.
More information from the European Society for Medical Oncology

CONTENTS:
INCA News
INCA Members' News
INCA Member in Focus: The NET Patient Foundation, UK
Medical News
INCA News

INCA prepares for NET Cancer Day 2017 

INCA prepares for NET Cancer Day 2017, November 10, to reinforce the campaign Let’s Talk about NETs with a focus on Unmet needs in information about NETs. This year the campaign will again distribute NET Cancer Day coffee cups, which can be used to strike partnerships with local cafes, hospitals, public institutions, to help raise awareness on NETs. A series of infographics and animations capturing the key findings of the INCA Survey on Unmet Needs (among NET patients and family, healthcare professionals and patient leaders in 26 countries) will be employed to relay the message Let's Talk about NETs

Read more on INCA website

A website promotes The Global NET Survey collaborative project of INCA and Novartis

A website http://netcancerexperience.com/ is being promoted with a wealth of NET patient stories that articulate their experience.  The idea of the website is to illustrate the findings of the Global NET Survey conducted by the collaborative efforts of INCA and Novartis.

The website contains real-life stories, some of them by INCA members’ representatives, and offers information and advice on how to handle practical issues in everyday life with NET. 

Read more on INCA website
INCA Members' News

The Carcinoid Cancer Foundation USA Launches
New Educational Carcinoid Syndrome Website

The Carcinoid Cancer Foundation USA has launched a new website, www.carcinoidsyndrome.org. This website is designed as a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. The Carcinoid Cancer Foundation’s web initiative is to ensure a place for education and information for all who would have any questions on carcinoid syndrome.  One can find everything about the disease as well as advice on wellness and contact with patient advocacy community. 

More information from carcinoidsyndrome.org

CNETS Canada requests nominations
for the Maureen Coleman Award

INCA member CNETS Canada has announced start of nominations for annual Maureen Coleman Award.  This award recognizes an individual for their outstanding contribution to the neuroendocrine cancer patient community.

The late Maureen Coleman was the Founder and Past-President of CNETS Canada who passed away in 2013 from neuroendocrine cancer. Maureen was a remarkable woman with great vision, passion and compassion and she made a significant contribution to the neuroendocrine cancer community worldwide. In her honour, CNETS Canada established the Maureen Coleman award to recognize exemplary dedication to this community. The award will be an engraved plaque and recipient names will be published on the CNETS Canada website and other communications channels.

The award is open to Canadians whose work or dedication has had a significant impact on the NET cancer community. Nominations are accepted by October 30, 2017 at email: info@cnetscanada.org The annual award is presented around NET Cancer Awareness Day, November 10th.
Photo:  Jacqueline Herman, President of CNETS Canada, with award recipients 2016 – Sherry O’Grady Fox and Natalie Mezey. 
More information from CNETS Canada

NET Patient Foundation UK encourages
for NET Cancer Day Coffee Morning

NET Patient Foundation UK announced that for this year's NET Cancer Day they are asking everyone to hold a coffee morning to help raise awareness of Neuroendocrine Cancer and to raise some much needed funds for the organization. Volunteers are invited to sign up by completing the form on the website and NET Patient Foundation will send everything one would need including posters, coffee cups and other bits to help raise awareness on the day. 

More information from NET Patient Foundation

NET Research Foundation USA announces two Patient & Caregiver Educational Conferences

NET Research Foundation’s Patient & Caregiver Educational Conferences draw neuroendocrine cancer patients and caregivers from across USA. Since their first conference in 2009, more than 3,000 attendees have participated in those events, and they continue to provide a vitally needed opportunity for education and fellowship. To ensure there are no financial barriers to participation, all conferences are offered free of charge.

Two forthcoming conferences were announced by NET Research Foundation: one in Indianapolis on November 11, 2017; and the other one in Houston on January 27, 2018. While the agenda for each conference varies based on patient feedback and presenter expertise and availability, all seminars feature a panel of leading clinicians in the fields of oncology, surgery, nutrition, and psychosocial wellness. Each expert typically gives a brief presentation followed by a moderated question and answer session. This unique platform is highly effective at connecting patients and caregivers with physicians who can answer pertinent questions and provide the latest information on neuroendocrine cancer treatment and research.

More information from NETRF

Pheo Para Alliance and Pheo Para Troopers
to merge in one organization


Pheo Para Alliance and Pheo Para Troopers, the two most recognized global nonprofit organizations focusing on pheochromocytoma and paraganglioma (pheo/para) have announced their intentions to merge. The goal of the merger is to optimize assistance to patients of this orphan cancer. 

Historically, the Pheo Para Alliance has focused on donor programs that support research and medical advances, while the Pheo Para Troopers created a grassroots campaign for direct patient support.  The decision to merge comes at a time when both organizations are poised for a period of significant growth.  Combining research, funding and patient direct support will make the new Pheo Para Alliance the most comprehensive pheo/para patient organization on the globe.

More information from Pheo Para Troopers

Unicorn Foundation Australia calls for cafes
to join Let's Talk about NETs



Unicorn Foundation Australia calls for cafes to raise awareness on NETs on this year's NET Cancer Day on November 10th, by joining the campaign with using branded coffee cups for the day. The cafes will receive posters, flyers, balloons and other promotional material as well as donation tins and receipt booklets. There is a template letter to the cafes, which Unicorn Foundation supporters can use to explain the cause to their locals and initiate raising awareness.  

More information from Unicorn Foundation Australia

INCA Member in Focus

The NET Patient Foundation UK

Interview with Catherine Bouvier, CEO

When was the organization founded and how?
The NET Patient Foundation was founded in 2006, but the idea had been developing for at least a year before the formal launch. I was the Specialist Nurse at the Royal Free Hospital in London and there was a small support group there called Living with Carcinoid, that was set up by our now Chairman, Peter Gwilliam and his wife. I knew something had to be done to address the terrible unmet need I was sensing throughout the UK from all the desperate calls I was receiving, the misinformation and the isolation. Myself and two patients, Andy and Cathy, set about to find some money to launch a wider charity - widen the NET - and with Peter’s permission we formed the NET Patient Foundation, and at the time that incorporated the Living with Carcinoid group. I was determined to provide better information; at least, to all NET patients with all types of NET, as so many were being managed in the wrong way.

Education was so vital, so we started with a website thanks to a generous donation from Paul Hunter, a well-known snooker player, who himself had been diagnosed with a NET and subsequently lost his battle at the age of 28. I was still a Specialist Nurse at the hospital at that time but the communication we were receiving through our website was so overwhelming that I left my post at the Royal Free to try and support the patients in the community. It was a huge leap of faith, but one that I have never regretted 11 years on.

Could you share some highlights of projects and your activity?
We have five pillars of activity: 
  • Support - we have two specialist nurses, a medical advisory board, two psychologists and our NET Natter programme, providing community support all over the UK, alongside supportive tools for our patients including wallet cards for easy access to the toilet and carcinoid crisis emergency prevention.
  • Education - patient materials are a passion of ours, and the development of our NET Handbook has been a real achievement. We also provide factsheets for all NET types and have ‘easy to read’ ENETS guidelines incorporated into every factsheet.
  • Advocacy - we strive to be an evidence-based advocacy group, collecting real-life data from the NET community to drive change in both commissioning for NET treatments and clinical practice. We developed our own Patient Experience Survey gathering nearly 1000 responses in England alone, we produced the first report challenging the Cancer Plan in England and the second report supporting the NET Scottish community is due out on NCD 2017. We also employed a dedicated NET Cancer Analyst who is pulling out all the stops to get relevant data for us to support our NET services.
Our other two pillars are research and awareness. We have employed a new member of staff, Bal, to focus on our awareness remit, and we continue to have our clinical fund supporting pilot projects in the UK, but also in-house projects and projects related to diet and nutrition. We have submitted one abstract to a major journal this year, in collaboration with our medical colleagues, looking at symptoms prior to diagnosis of a GEPNET, three more being submitted to our National Conference regarding our new statistical data for incidence, prevalence, survival and associated cancers, and two further abstracts being reviewed for submission to journals early next year.
 
How do you see your future role?
The future is all about gathering data, not opinions, pushing for qualitative research to be integrated into clinical studies, focusing on the real needs of our patient population not making assumptions, helping patients live better with their disease and empowering patients and all who are involved in NET patient care to be educated and knowledgeable, but ultimately to continue to be the voice for this hidden cancer.

Visit NET Patient Foundation website
Medical  News

Invitation for participation by health professionals
Nutrition in NETs: Health Professional Survey


Health professionals who regularly treat or manage patients with a neuroendocrine tumour (NET) are invited to participate in a short online survey, which aims to explore the experiences of health professionals regarding nutrition issues and management experienced by patients diagnosed with a NET.

The online survey is voluntary will take approximately 5-10 minutes to complete. All health professionals regularly working with NET patients, including those working in medical oncology, radiation oncology, nuclear medicine, gastroenterology, endocrinology, surgeons, nursing, dietitians and allied health, are invited to complete this survey.

This survey is part of a research project being carried out by the staff at Peter MacCallum Cancer Centre and The University of Melbourne, Australia; and is supported by the Victorian Cancer Agency, Department of Health and Human Services, and Austin Health, Australia. The coordinating principal investigator will use results of the survey as part of their PhD studies.

Responses to the survey will be anonymous and participants will not be asked to provide their name, or the name of their workplace, at any stage during the survey. Consent to take part will be assumed upon completion of the survey.

Please encourage your experienced healthcare professionals in your country to participate, the survey is not intended for patients! 


The online survey will be open until 30th November 2017 and can be accessed here 

New research paper on Pheochromocytoma and Paraganglioma Susceptibility Genes

A new research on “Pheochromocytoma and Paraganglioma Susceptibility Genes” was published in JAMA Oncology Journal in September 2017.  The paper examines the associated risk of the disease in the context that 25%-50% of Pheochromocytoma and Paraganglioma are caused by inherited syndroms.  The e/summary points out that approximately 40% of the tumors of the autonomic nervous system, pheochromocytomas and paragangliomas (PCC/PGL), are associated with an underlying inherited mutation, more than any other tumor type. Even for genes in which an association between mutation and disease has been well established, the frequency of mutations is quite rare; thus, a paucity of data exist on which to base clinical recommendations for patients regarding the risk for developing the first PCC/PGL (e.g., if they are identified though familial mutation testing), additional primary PCC/PGLs, metastatic disease, and other tumor types. 

More information in JAMA Oncology

ESMO 2017: Patients Feel Psycho-social Impact of Chemo
More Acutely than Physical Side Effects


The preliminary results of a study presented at the ESMO 2017 Congress in Madrid show that socio-psychological factors have become more significant for patients today than physical side effects such as nausea and vomiting, which were among the top concerns in similar studies carried out previously. The side effects of chemotherapy seriously impact cancer patients’ daily lives, and managing them is a longtime concern for doctors. 

The side effects of chemotherapy seriously impact cancer patients’ daily lives, and managing them is a longtime concern for doctors. Patient assessments on the subject have been carried out regularly since 1983. The new study presented at ESMO 2017 showed that perceptions of chemotherapy side effects in breast and ovarian cancer patients change not only over time, but also throughout the course of treatment.

With the most recent analysis dating back to 2002, we felt it was time to collect new data and update the interview format,” said study author Dr. Beyhan Ataseven from Kliniken Essen MitteEvang, Huyssens-Stiftung in Essen, Germany. “Living conditions have changed, and so have the accompanying therapies linked to chemotherapy. As doctors, we want to know what our patients care about.”


More information from ESMO 2017

Experience with PRRT from India 

A new research report by a scientific team from New Delhi, India, on “Exceptional Therapeutic Outcome of Metastatic Neuroendocrine Tumor with Peptide Receptor Radionuclide Therapy” was published by Journal of Nuclear Medicine & Radiation Therapy.  Authors are Manoj Gupta from the Department of Nuclear Medicine, Rajiv Gandhi Cancer Institute and Research Centre; Partha S Choudhury from the Department of GI-Oncosurgery, Rajiv Gandhi Cancer Institute and Research Centre; and Anurag Mehta from the Department of Pathology, Rajiv Gandhi Cancer Institute and Research Centre.  

More information from Journal of Nuclear Medicine & Radiation Therapy

World Cancer Research Day was celebrated on 24 September 


World Cancer Research Day was celebrated on 24 September 2017 by the initiative of 11 promoting organizations.  The event stressed how crucial it is to continue promoting cancer research in all different fields and in a collaborative and integrative manner so that we can reduce the impact of cancer reducing the estimated numbers so that by 2030 1 person would not die of cancer every 2 seconds. World Declaration for Research on Cancer was launched. It calls for the active involvement of citizens, enterprises, institutions and leaders in diverse areas and activities to join efforts to promote research in order to reduce the number of people who develop cancer and to improve survival rates and the quality of life among cancer patients. 

Sign the World Declaration for Research on Cancer for a future without cancer!

ASCO and Friends of Cancer Research Release
Comprehensive Recommendations to Broaden Eligibility Criteria
for Cancer Clinical Trials

ASCO and Friends of Cancer Research (Friends) are calling for the use of more inclusive eligibility criteria for cancer clinical trials. This recommendation is in conjunction with the release of a Special Series, published in the Journal of Clinical Oncology (JCO). The series, which includes a joint ASCO-Friends research statement, provides a comprehensive examination of eligibility criteria for cancer clinical trials with recommendations to address eligibility criteria in five specific areas: minimum age requirements for trial enrollment, HIV/AIDS status, brain metastases, organ dysfunction, and prior and concurrent malignancies.

This joint initiative provides a roadmap for how to safely employ broader eligibility criteria for cancer clinical trials and promote a culture of inclusion,” said ASCO President Bruce E. Johnson, MD, FASCO. “Allowing more patients to participate in clinical trials will ultimately enhance our understanding of how a given treatment should be utilized to treat the diverse patients we see in everyday clinical practice.”

According to the two organizations, eligibility criteria are intended to protect the safety of trial participants — particularly those populations that may be more vulnerable to adverse events of a trial drug – as well as define the trial population. Overly restrictive eligibility criteria, however, can impede patient accrual to cancer clinical trials and reduce the generalizability of trial results, making findings more difficult to apply to treatment of real world cancer patients.


Historically, access to clinical trials has been limited to relatively few patients,” Said Dr. Jeff Allen, President & CEO of Friends of Cancer Research. “Broadening the eligibility criteria for clinical trials will provide the opportunity for more people to participate in research studies.  Not only will this improve access, it will make the trial results more reflective of the people that will ultimately use the drug.”

More information from ASCO
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