Navigating Pancreatic Cancer
We are here to empower you to ask bold questions, seek out the best treatment options, and face the unique challenges of pancreatic cancer head-on. We want to give you the resources and information you need to make informed decisions that are best for you.
As overwhelming as a pancreatic cancer diagnosis is, it is important to act quickly and put a treatment plan into place. Treatment should ideally begin within one month after you receive your diagnosis. Understand your disease. Thoroughly understand what stage of pancreatic cancer you have and inquire about having your blood and tumor genetically sequenced. […]
If you have been diagnosed with pancreatic cancer, a clinical trial may be your best treatment option. Many clinical trials are underway for patients in all stages of the disease and may involve new combinations of currently available drugs or new drugs that have worked in other cancers. No matter where you are in your journey, we encourage you to learn more about clinical trials.
LET’S WIN! Pancreatic Cancer A Dynamic Way to Share Information Recognizing that there is an urgent need for patients to communicate amongst themselves and with the medical community about potentially life-changing treatments and clinical trials, we are proud to be affiliated with Let’s Win. Let’s Win is an interactive online community where patients and families […]
Pancreatic Cancer Connections is online social community that provides a safe space for pancreatic cancer patients and their loved ones to share their experiences, get valuable coping resources, and support one another. Patients interact with others who are facing a pancreatic cancer and can post questions to the board or message other members privately. This community forum is a valuable resource for patients, caregivers, and their loved ones to refer to at various stages of their treatment and recovery.
Patients and loved ones can sign up for Pancreatic Cancer Connections at no cost and will be welcomed into an engaging and supportive community to discuss topics including treatment options, nutrition, and coping with the disease. Pancreatic Cancer Connections is hosted by Inspire, a leading healthcare social network that connects more than 1,000,000 patients and caregivers.
Celebrating 20 Years
Our Story of Progress & Promise
As we reflect on the past 20 years of milestones and build on the momentum we’ve created in advancing the understanding and treatment of pancreatic cancer, we are pleased that we are more than a voice in the national dialogue on pancreatic cancer research; we started the conversation. As the nation’s largest private funder of pancreatic cancer research, we have the profound responsibility of shining a spotlight on pancreatic cancer and doing everything possible to improve the treatment of the disease. To that end, we have directed $165 million to research to date, and we are the only pancreatic cancer research organization that directs 100% of every donation to research.
In honor of the patients and their loved ones facing this life-threatening disease with tenacity and grace, the researchers in laboratories across the country, the clinicians on the front lines of treatment, and the donors, sponsors and other supporters who wholeheartedly believe in our mission, we commemorate this 20th anniversary by looking back at our collective journey and rededicating ourselves to what matters most: improving patient outcomes.
The Need for a Pancreatic Cancer Research Foundation
In 1998, 51-year-old Marc Lustgarten, Vice Chairman of Cablevision, was diagnosed with pancreatic cancer. It quickly became evident that there were few therapy options, and research was practically non-existent. Pancreatic cancer was truly an orphan disease. There was only $16.2 million, or less than one half of one percent of the National Cancer Institute’s (NCI) multibillion dollar budget, allocated to researchers studying pancreatic cancer. Yet, this disease was the nation’s fourth leading cause of cancer deaths.
Charles F. Dolan, Chairman of Cablevision, Marc, and Dr. Robert F. Vizza, former President and CEO of St. Francis Hospital, met to explore options to help Marc and to better understand the landscape of this disease. After evaluating the available treatment options and the state of pancreatic cancer research, they, along with James Dolan, President and CEO of Cablevision, developed a vision for a foundation dedicated to “advancing the scientific and medical research related to the diagnosis, treatment, cure and prevention of pancreatic cancer.” Initial funding was generously provided by Charles F. Dolan, and Dr. Vizza became President and CEO of the Lustgarten Foundation for Pancreatic Cancer Research.
To organize the Foundation, a Board of Directors, Scientific Advisory Board, and Corporate Advisory Board were established. Charles F. Dolan assumed the role of Chairman of the Board, a position which he held for almost 20 years, he is now Chairman Emeritus. A world-renowned Scientific Advisory Board comprised of researchers and clinicians from leading institutions across the country was created to guide our research funding strategy and activities. The Corporate Advisory Board, led by Honorary Chairman former President Jimmy Carter and joined by prominent cable and media executives, enabled the Foundation to promote its mission to millions of Americans.
Marc’s diagnosis and passing had a significant impact on everyone at Cablevision which has been a strong supporter of the Foundation from the start. In fact, on October 4, 1999, Cablevision dedicated the Radio City Music Hall re-opening gala to mark the national launch of the Lustgarten Foundation. During the event, the Foundation’s Corporate Advisory Board announced its commitment to air PSAs designed to heighten awareness of the need for increased research, with the initial PSA featuring former President Jimmy Carter.
Then, in 2008, Cablevision made a multi-year commitment to pay all the Lustgarten Foundation’s administrative expenses. This unique partnership ensured that 100% of every dollar donated went directly to pancreatic cancer research.
Cablevision also used its unique portfolio of high-profile media and entertainment assets to create disease awareness by joining with the Lustgarten Foundation to launch curePC, a public awareness campaign. President Carter was the first of many notable figures, including Danny Aiello, Joan Cusack, Michael Ealy, Dr. Sanjay Gupta, Felicity Huffman, Larry King, Matthew Modine, Rosie O’Donnell, Dr. Mehmet Oz and Dr. Randy Pausch, to record PSAs for the Foundation. The PSAs, along with media coverage of curePC’s campaign activities, reached millions of people and increased awareness of the Foundation and of the need for increased pancreatic cancer research.
Working with the National Cancer Institute (NCI)
At a meeting with the Executive Director of the NCI in 1998, it was agreed that a program was needed to address the survival rate for pancreatic cancer. In 2000, the Foundation joined with the NCI to participate in the first ever NCI Pancreatic Cancer Progress Review Group (PRG) to develop a national agenda for pancreatic cancer research. Based on recommendations from the PRG, the NCI developed an action plan to increase support and funding for pancreatic cancer research. As part of this plan, the NCI committed to fund at least three Pancreatic Cancer Specialized Programs of Research Excellence (SPOREs) for five years, and the first three SPORE grants were awarded in 2003. This effectively more than doubled the annual commitment of the NCI to pancreatic cancer research. Over time, the Foundation’s support of pancreatic cancer research helped stimulate the NCI to increase its pancreatic cancer research funding to more than $152 million in 2016 and inspired the creation of other pancreatic cancer organizations.
Creating a Research Map
The Foundation’s initial research strategy was aimed at attracting researchers to the field of pancreatic cancer. To accomplish this, we sought out and funded researchers from around the world, many of whom have now made it their life’s work to better understand and treat this disease. We awarded a series of $100,000 grants and held scientific conferences bringing together pancreatic cancer leaders to exchange ideas. The Lustgarten Foundation became the driving force in changing the pancreatic cancer research landscape.
We then developed a focused research strategy to identify critical areas of research that when successfully completed, will bring us more quickly to a cure. As part of this strategy, the Foundation invites leading scientists to submit research proposals that address early detection, new drug development and clinical trials. The competitive grants are reviewed by our SAB and then the best proposals receive funding.
As part of this focused research approach, we implemented a pancreatic cancer research map to strategically move key research initiatives forward. The research map represents a dynamic plan, which evolves as new areas of research are identified. Areas of focus, which continue to guide our research today, include earlier diagnosis and more effective treatment, with the goal of finding a cure.
Establishing Dedicated Pancreatic Cancer Research Laboratories
Once the research groundwork had been laid, we could now expand our efforts to start a world-class pancreatic cancer research laboratory at the Cold Spring Harbor Laboratory on Long Island. Founded in 1890 and home to eight Nobel Prize winners, Cold Spring Harbor Laboratory has shaped contemporary biomedical research and was the ideal location to establish the first Lustgarten Foundation Dedicated Pancreatic Cancer Research Laboratory in 2012.
David Tuveson, M.D., Ph.D., a renowned pancreatic cancer expert, was brought on as the director. As a physician-scientist, Dr. Tuveson merges his laboratory and clinical research, enabling him to bring new options to patients more rapidly. Twenty-five scientists in the lab focus exclusively on pancreatic cancer, designing new models of the disease and discovering novel therapeutic and diagnostic platforms. To help meet the need for additional research, we are opening two more dedicated pancreatic cancer research laboratories in the fall of 2018.
Founding the Distinguished Scholar, Research Investigator and Translational Clinical Grant Programs
In 2014, we launched two programs to stimulate new research. The Distinguished Scholar program supports scientists who are at the top in their field and are at the forefront of today’s most exiting breakthroughs in pancreatic cancer research. The Research Investigator program funds talented scientists with historical accomplishments in cancer research. Through these grants, the Foundation also attracted prominent scientists from other fields to study pancreatic cancer.
In 2017, we started the Translational Clinical grant program, which focuses on research “from the bench to the bedside” and funds new, innovative multi-institutional translational research projects.
Collaborating with Stand Up To Cancer
The Lustgarten Foundation – Stand Up To Cancer (SU2C) collaboration has played a critical role in promoting therapeutic discoveries that can lead to new treatments. This collaboration has flourished with now more than $85 million of combined funding. More than 170 investigators across 28 leading research centers in both the United States and the United Kingdom are conducting multicenter, multidisciplinary projects with explicit objectives to drive innovation to the clinic to tackle pancreatic cancer. Together, these collaborative teams have planned, started or completed 22 clinical trials.
Our first joint research project focused on Abraxane, which the FDA approved in 2012 in combination with gemcitabine as first line treatment for patients with advanced metastatic pancreatic cancer. This was the first new treatment approved in nine years and is now the standard of care for many patients.
In 2018 we joined forces to create the Pancreatic Cancer Collective to accelerate the research process and improve patient outcomes. Through the Collective, our two organizations are positioned to attract new collaborators; improve the diagnosis of pancreatic cancer; and support the next generation of pancreatic cancer investigators. The initial funding commitment for the first round of grants is $25 million with a commitment to continue over many years.
Pancreatic cancer research is moving faster than ever before, and there has never been a more exciting or hopeful time for patients. Our Lustgarten-funded researchers have achieved significant milestones in understanding and treating this disease and in detecting the disease earlier – advancements that are already changing patient outcomes.
Mouse Model Created for Pancreatic Cancer and the Role of the Stroma
One of the most significant early advancements was achieved by our Chief Scientist, Dr. David Tuveson, during his tenure at the University of Pennsylvania. Dr. Tuveson generated the first genetically engineered mouse model for pancreatic cancer, a model which is now used throughout the scientific community to test new therapies for pancreatic cancer. He also discovered that pancreatic cancer tumors develop a protective membrane, or stroma, which prevents chemotherapy from reaching the cancer cells, impeding treatment.
Pancreatic Cancer Genome Project
To further understand the disease so it could be more effectively diagnosed and treated, in 2008 we funded renowned cancer researcher Dr. Bert Vogelstein of Johns Hopkins University’s Kimmel Cancer Center to lead the most comprehensive genetic sequencing that had ever been done for any cancer. The Pancreatic Cancer Genome Project was named one of the top three
“Breakthroughs of the Year” by Science. Dr. Vogelstein found that:
- Pancreatic cancer is caused by a number of mutations acting together, rather than by a single gene;
- Understanding the mutations offers the potential for new diagnostic tools and therapies;
- Certain mutated pancreatic cancer genes are cancer-causing, while others are mutations that occur simply as a result of the cancer being formed;
- The KRAS gene is mutated in nearly 100 percent of all pancreatic cancer tumors.
The Pancreatic Cancer Genome Project laid the groundwork for two major milestones to come later: the development of CancerSEEK, a blood screening test and the use of Keytruda,® an immunotherapy treatment for advanced pancreatic cancer patients whose tumors are mismatch repair deficient.
Researchers led by Dr. Vogelstein designed a blood test called CancerSEEK and published data on this groundbreaking test in 2017. CancerSEEK can detect the presence of early pancreatic cancer and seven other cancers and identify the organ of origin of these cancers. This study lays the groundwork for a single blood screening test for multiple cancers, including pancreatic cancer, that could be offered as part of routine medical checks. The initial research for this blood test began in 2008, when we launched the $1.25 million Pancreatic Cancer Biomarker Development Project, the start of our long-standing Early Detection Initiative, with the goal of developing new earlier detection and screening methods and better imaging techniques.
“Years from now, death from cancers will be a lot less common, and that’s going to be in large part due to earlier detection.” – Bert Vogelstein, M.D., Lustgarten Foundation Distinguished Scholar
In an unprecedented, fast-tracked review, the FDA approved Keytruda® (pembrolizumab) as the first immunotherapy treatment for advanced pancreatic cancer patients whose tumors have a unique genetic mutation called mismatch repair deficiency that alters their capacity to repair DNA, which is a factor in cancer development. It is estimated that approximately 1 in 50 advanced pancreatic cancer patients has a tumor that is mismatch repair deficient. The approval of Keytruda® was named a runner-up for the prestigious “Breakthrough of the Year” award by Science in 2017.
Personalized Medicine and the Organoid
Another significant research achievement was Dr. Tuveson’s development of the organoid for pancreatic cancer, which brought the laboratory closer to the clinic. Organoids are three-dimensional cell culture systems which reproduce a patient’s tumor in a dish to test it repeatedly with different drugs, with the aim of identifying new treatments. Presently, it is difficult to determine how a patient will respond to a specific treatment and therefore, patients may be treated with drugs that they won’t respond to. In the laboratory, the organoid becomes the subject for testing. Researchers have demonstrated that organoids can accurately predict how patients with pancreatic cancer will respond to a variety of treatments. This translational technology offers the hope of personalized cancer treatments in the future.
In fact, working with Dr. Tuveson, Dr. Brian Wolpin, Dana-Farber Cancer Institute, is now personalizing treatment directly for patients to identify the best second-line treatment options. He is testing each patient’s organoid response to different therapies and genetically sequencing both the tumor DNA and the inherited DNA. The sequencing findings are then used for patients’ treatment, which may include using off-label use of medications that treat other cancers. Dr. Wolpin’s recent research findings have suggested that approximately one-third of pancreatic cancer patients may have a genomic alteration that could impact treatment decisions and guide doctors to choose a specific therapy for a personalized medicine approach.
As we continue to fund the most innovative research, we are also focused on serving as a resource for those impacted by pancreatic cancer. The Foundation created and began distributing a variety of free online and printed educational materials to help patients and loved ones make informed healthcare decisions. The Foundation also provides support directly to patients and caregivers who contact our Patient Information Coordinator. Moreover, we collaborate with an online, free clinical trial matching and referral service.
In 2016, Let’s Win! Pancreatic Cancer, an interactive online community, was founded as an unprecedented platform that enables doctors, scientists and patients to share fast-breaking information on potentially life-saving pancreatic cancer treatments and clinical trials. The goal is to provide actionable information all in one place. In 2017, to further help patients and their loved ones navigate their pancreatic cancer journey, we launched an online patient/caregiver support community, Pancreatic Cancer Connections, in partnership with Let’s Win! Pancreatic Cancer Foundation and Inspire, a leading healthcare social network.
Recognizing the need to reach out directly to the pancreatic cancer community, we launched the Lustgarten Walk program, starting with one walk in Long Island in 2001, which attracted over 1,200 people and raised more than $140,000. Today, the program has raised more than $40 million, and we hold more than 40 walks annually in nearly 20 states in our quest for a cure. When our walk program started, our participants were walking in memory of loved ones lost to the disease; now, 20 years later, survivors attend our walks and community events, offering inspiration, hope and support to those who are going through the same journey.
To complement the walk program, the Foundation’s supporters began holding community events across the country to raise awareness and funding for pancreatic cancer research. Events included golf outings and other sporting events; weddings, anniversaries, and other milestone celebrations; social activities; and workplace initiatives. Nearly 300 events are held annually throughout local communities as well as large scale fundraisers.
For the past 17 years, the annual Holiday Rock & Roll Bash, initiated by Cablevision CEO James Dolan and hosted by Cablevision, The Madison Square Garden Company and AMC Networks, has attracted thousands of attendees and has raised a cumulative total of nearly $24 million for research. In 2013, A Night at The Forum, featuring a private performance by the legendary Eagles, was held to commemorate the re-opening of the newly renovated Forum in California. This sold-out event raised close to $2.5 million for research.
Beyond the support we’ve received through our walks and events, we are incredibly grateful for the generosity of our thousands of individual and corporate donors whose outright gifts have been so instrumental to the Foundation’s growth. These gifts, in addition to the substantial financial support provided by Cablevision, have profoundly impacted the amount of research we can fund in areas including earlier detection and new treatments. We have recently received multimillion dollar bequests from the estates of Walter B. Wriston and Mary Brenneisen. We closed out 2017 with a multimillion dollar corporate gift from Creative Bath Products, Inc. These substantial bequests and gifts are making a difference in the research we can fund that can impact patients and their loved ones.
As we embrace the future, we are proud to report that we have directed $165 million to research to date, including an unprecedented $40 million in 2017-2018 alone. We are continuing to make large-scale commitments to leading pancreatic cancer researchers, funding studies that seek to stretch the boundaries of science. We have established a private fund for administrative expenses to replace Cablevision’s support, so that we can continue to direct 100% of every donation to pancreatic cancer research.
We will continue to focus our research program on the areas that will have the greatest impact for patients: earlier detection and early intervention; personalized medicine; and new therapies. For our earlier detection and early intervention program, we are working to move forward the routine blood test in the doctor’s office (CancerSEEK), advance imaging capabilities to pick up tumors when they are smaller, and test innovative neoadjuvant (before surgery) therapies so patients with locally advanced pancreatic cancer who would generally not be operable can have surgery.
We are supporting research that advances personalized medicine by using new technologies to conduct genetic sequencing in order to identify existing medicines and new therapy combinations that are most likely to improve patient outcomes.
We are unwaveringly committed to the guiding principle that it is our duty to change patients’ lives, create a larger community of survivors, and give patients reasons to have an abundance of hope. We believe it’s no longer a matter of “if” we are going to conquer this disease. It’s a matter of when.
Gavin DeGraw Joins Us in the Fight
Having lost his mother to the disease, singer, songwriter Gavin DeGraw knows firsthand how devastating pancreatic cancer is for patients and their families. Gavin is turning his grief into action by helping us raise awareness.
When his mother first passed, Gavin told People magazine that he had a terrible time writing music. “I was too overwhelmed with sadness to complete anything. Everything I was writing was just sounding like a hymn, and it was making me so sad.”
Gavin finds keeping busy and supporting the Foundation is helping him work through his grief.
He is currently on his RAW TOUR — a “very raw, acoustic based” show. For tour dates and locations, www.gavindegrawtour.rtouring.com
“My mother didn’t make it and unfortunately right now that’s a common story. But it doesn’t have to be the story permanently. By funding research, the Lustgarten Foundation is going to change the course of this disease. I encourage everyone to get involved in some way – join a walk or make a donation.” — Gavin DeGraw
In addition to all being fans of his music, everyone at the Foundation is grateful to Gavin’s support in helping us raise awareness for pancreatic cancer. We know his mother is proud of him.
Collaborating with SU2C
The Lustgarten Foundation and Stand Up To Cancer have funded more than 170 investigators across 28 leading research centers and have planned, started or completed 22 clinical trials. The Pancreatic Cancer Collective is building on this momentum and pushing the boundaries of what can be accomplished even further.
Pancreatic Cancer News
Pancreatic cancer often spreads, forming metastases in the liver or lungs. The prognosis is better for patients with metastases in the lungs. However, the organ that is more likely to be affected depends on the cancer cells’ ability to alter their characteristics and shape – as a research team at the Technical University of Munich (TUM) has discovered.
Long-term pancreatic surveillance of high-risk patients identified cancers while they were still resectable, and 85% of such patients remained alive 3 years after diagnosis, researchers reported. An artist’s rendering of a body, with the pancreas shown in red. “Among individuals undergoing pancreatic surveillance, specific detectable lesions with worrisome features predicted neoplastic progression. The short-term outcomes […]
As an avid reader of obituaries, I’ve been struck by how many people these days are succumbing to pancreatic cancer, a cancer long considered rare.
And relatively speaking, it is still rare, accounting for just 3 percent of all cancers. But it is also one of the deadliest because symptoms almost never develop until the disease is advanced and incurable.
Although 55,440 cases, affecting 29,200 men and 26,240 women, are expected to be diagnosed this year in the United States, 44,330 people will die of it, often within months of diagnosis, making it the fourth leading cause of cancer deaths in this country (after lung, colorectal and breast cancer). Furthermore, it is on track to become the second most deadly cancer by 2030.
Identifying certain compounds found in breath samples helped distinguish patients with pancreatic cancer from those without, according to research published in the British Journal of Surgery.
George Hanna, PhD, FRCS , of the department of surgery and cancer at Imperial College in London, and colleagues wrote the role of these volatile organic compounds (VOC) found in the breath have been studied in other cancers in the past.
Boosting the power of some cancer drugs could be as simple as modifying what you eat, according to two recent studies in mice. The results are the latest from an ongoing push to harness the body’s metabolism to fight cancer.
A study1 published on 11 July in Nature finds that supplementing mouse chow with the amino acid histidine made a chemotherapy called methotrexate more effective against leukaemia cells. Histidine, which is particularly rich in foods like meat and beans, can be given as a nutritional supplement.
A groundbreaking clinical trial on whether diet could boost the effectiveness of cancer drugs is set to be launched by one of the world’s leading oncologists.
The work, led by Siddhartha Mukherjee at Columbia University Medical Center in New York, will investigate whether a high-fat, low-carbohydrate diet could improve outcomes for patients with lymphoma and endometrial cancer.