WASHINGTON, DC (Aug 04, 2017)— The Cancer Support Community (CSC), an international nonprofit, today announced the results of its study from the Cancer Experience Registry of cancer caregivers at the 2017 American Psychological Association Annual Convention.

Findings show that among other things, cancer caregivers experienced substantial anxiety (48 percent of respondents) and elevated fatigue (37 percent). Additionally, the top needs expressed by caregivers include:

• 72 percent wanted better understanding of the patient’s medical condition, treatment, and prognosis
• 62 percent wanted to learn how to manage personal stress
• 62 percent lacked information about available financial resources
• 54 percent desired guidance on how to navigate the health care system

Also of note, caregivers experiencing more unmet needs were people who reported less knowledge about the patient’s cancer. They felt less prepared to provide and coordinate care, and they experienced greater burden.

“The emotional and physical health of cancer caregivers are seldom monitored, so caregivers tend to fall through the cracks,” said Alexandra Zaleta, Ph.D., Senior Director of Research at CSC. “Early recognition of distress and appropriate intervention are imperative for the well-being of the caregiver and long-term care of patients.”

“My mother’s diagnosis of metastatic breast cancer was an overwhelming and confusing experience,” said Anabella Aspiras, RN, MPA, Senior Director of Strategic Initiatives at CSC, and a former caregiver. “I was fortunate enough to benefit from the free services and programming for caregivers provided by my local CSC affiliate, which gave me hope and helped me to stay positive.”

149 caregivers took part in this study. They are a part of CSC’s Cancer Experience Registry that includes over 12,000 patients and caregivers of 45 cancer types.

See full poster presented at the 2017 American Psychological Association Annual Convention.

Brian d'Arcy James Runs Chicago Marathon in Honor of His Father and Cousin to Benefit the Cancer Support Community. Go TEAM TOM!

WASHINGTON, DC — Brian d'Arcy James of Netflix’s series 13 Reasons Why, Academy Award-winning film Spotlight, and Tony Award-winning Broadway hit Hamilton is set to take on the 26.2-mile-long challenge of the 2017 Bank of America Chicago Marathon on October 8th and raise money to support cancer patients and their loved ones served by the Cancer Support Community.

“Like most everyone, my life is touched by cancer. My father Tom James died of cancer at age 50 and my cousin Tom is currently fighting cancer,” said James. “This is why my brother Andrew and I are running the Chicago Marathon under the banner of TEAM TOM to benefit the Cancer Support Community. What makes CSC so wonderful to me is the wide approach they take to not only support patients who are dealing with diagnoses, but also the friends and family around them who are as well.”

“We were very heartened when Brian and Andrew reached out and said they want to run the Chicago Marathon to benefit the Cancer Support Community in honor of their father and cousin,” said Kim Thiboldeaux, CEO of CSC. “We wish Brian and Andrew the best of luck and we will loudly cheer on TEAM TOM on race day!”

In 2012, James performed at CSC’s annual Spring Celebration Gala in New York City at which quintessential American fashion designer Carmen Marc Valvo was honored. In supporting CSC, James joins a prominent group that includes Tony winner LaChanze, Daytime Emmy nominee Katherine Kelly Lang, former WBA middleweight boxing champion Daniel Jacobs, Orange Is the New Black actress Alysia Reiner, David Alan Basche of TV Land's The Exes, and Broadway’s Golden Couple Marin Mazzie and Jason Danieley.

This year is the 40th anniversary of the Chicago Marathon. Chicago is one of the biggest marathons in the world attracting tens of thousands of runners to the race to raise money for different charities. The race is on Sunday, October 8, 2017.

All funds raised will benefit the Cancer Support Community.

DONATE TO TEAM TOM

About Brian d’Arcy James

Brian d’Arcy James was awarded the 2016 SAG Award, Critics Choice Award, Gotham Award and the Independent Spirit’s Robert Altman Award for Best Ensemble, for his portrayal of “Matt Carroll” in the 2016 Best Picture Oscar®-winning film Spotlight starring opposite Michael Keaton, Mark Ruffalo, and Rachel McAdams.

James is a celebrated stage actor who has received three Tony nominations for his work on Broadway in the hit musical “Something Rotten,” “Shrek the Musical,” and “Sweet Smell of Success.” In 2015, he originated the role of King George in Lin-Manuel Miranda’s “Hamilton” off-Broadway and was honored to reprise it on Broadway this summer.

His upcoming film projects include: MARK FELT: The Man Who Took Down The White House, with Liam Neeson (September); Aaron Sorkin’s directorial debut, Molly’s Game, opposite Idris Elba and Jessica Chastain (November); Stephen King’s 1922, directed by Zak Hilditch; Song of Back and Neck, directed by Paul Lieberstein; Theresa Rebeck’s Trouble, starring Anjelica Huston; and Danny Strong’s JD Salinger biopic Rebel in the Rye, starring Nicholas Hoult and Kevin Spacey.

In Toronto, Brian was honored by the Creative Coalition for his work in film, presented by Molly’ Game director Aaron Sorkin.

On television, James co-stars as Henry Baker in the hit Netflix series “13 Reasons Why.” Other credits include ‘Manhunt: Unabomber,” “The Big C,” and “Smash.”

As a concert artist, James has performed worldwide at venues that included The White House, Madison Square Garden, and Carnegie Hall.

DENVER – (July 13, 2018) – The Cancer Support Community (CSC), a global nonprofit, announced today a new partnership with Rocky Mountain Cancer Centers (RMCC) that will enable Colorado’s largest and most comprehensive provider of cancer care to expand its supportive care for patients and caregivers.

Built on CSC’s national program model, thanks to the generous financial support of the Barbara Bradley Baekgaard Family Foundation, this agreement will make services available across RMCC’s 13 primary clinic locations with CSC satellite hubs being established at RMCC’s clinics in Lone Tree and in Colorado Springs. Now, anyone throughout Colorado impacted by cancer will have access to CSC’s comprehensive, scientifically validated psychosocial support programs, including professionally facilitated support groups, education, social connections, healthy lifestyle classes, and other resources.

CSC and RMCC leaders made the announcement at the Colorado State Capitol where Lt. Gov. Donna Lynne read a proclamation commemorating Colorado Cancer Caregivers Day. The proclamation recognizes those who provide essential support during a patient’s diagnosis.

“Bringing the Cancer Support Community to the Colorado community builds upon our vision to lead the way in cancer care. We believe that the CSC and RMCC collaboration tightly aligns with our shared values: minimizing the impact of illness and expanding the meaning of life for patients and their loved ones,” said Susan Ash-Lee, Director, Supportive Care, RMCC.

“Today marks a major step forward for cancer patients and caregivers in Colorado. We are honored to work with RMCC to provide free supportive resources that will help patients gain a sense of control at a time when a medical diagnosis can make life seem so chaotic,” said Kim Thiboldeaux, CEO of CSC.

The announcement marks another milestone for CSC in Colorado. In January, the Denver-based MyLifeLine.org Foundation, a unique web-based communication platform that connects cancer patients and caregivers to their community of family and friends, became part of CSC, and Denver is now the global nonprofit’s digital hub.

The ceremony at the Capitol also featured two caregivers, Jen and Britton Thomas, whose story helped inspire the proclamation. Jen and Britton each utilized the free services provided through MyLifeLine and relied heavily on its care coordinator features to ease the daily burdens while navigating their spouses’ cancer journeys. In addition, Britton’s wife received treatment at the RMCC.

Unfortunately, their spouses each passed away too young. Years later, Jen and Britton met serendipitously through MyLifeLine and bonded over shared caregiving experiences. In time, they fell in love and got married to begin a new life together and they now have a baby daughter, Ashlyn, who turned one on June 17.

“We share our story so that other families facing a cancer diagnosis know that you do not have to endure this experience alone,” said Britton and Jen Thomas. “So many parts of our story—from MyLifeLine to RMCC are connected through CSC, which means enhanced services for patients and caregivers.”

Atlanta, Georgia - The Cancer Support Community (CSC) announced today at the 2017 ASH (American Society of Hematology) Annual Meeting and Exposition the results of a study of chronic lymphocytic leukemia (CLL) survivors as part of its Cancer Experience Registry. The study explores how CLL affects daily life, finances and relationships. It also examines the association between quality of life and CLL course of treatment.

“This study is an important first step into understanding the challenges and concerns specific to CLL patients and the psychosocial consequences of being diagnosed with CLL,” said Linda House, CSC president.

Well over half of respondents (62 percent) indicated that CLL “somewhat to very much” affected their views on life expectancy. Also noted were concerns about quality of life (41 percent), finances (40 percent), ability to work (34 percent), and relationships with friends and family (26 percent).

Over one-fifth (21percent) of CLL survivors reported experiencing substantial levels of anxiety and fatigue as compared to the general US population. Of note, worse anxiety was significantly associated with active treatment, whether it was the first line of therapy or subsequent therapy, even after controlling for the effects of age, gender, education, and income. Interestingly, poorer quality of life outcomes were not related to being in active surveillance (“watch and wait”) treatment.

“These findings highlight the importance of examining changes in quality of life and distress throughout the cancer experience and that psychosocial services, like those offered through CSC, play a vital role in supporting patients and survivors who have these symptoms and concerns,” said Alexandra Zaleta, PhD, CSC Senior Director of Research.

The poster will be formally presented on Saturday, December 9 from 5:30 to 7:30 p.m. at the ASH (American Society of Hematology) Annual Meeting and Exposition. The full poster as presented at the Meeting is available online here.

WASHINGTON – (Jan 30, 2019) –The Cancer Support Community (CSC), a global nonprofit, is launching a unique research study focused on individuals diagnosed with Acute Myeloid Leukemia (AML), a cancer of the blood and bone marrow which accounts for approximately 19,520 new cases of cancer each year (American Cancer Society, 2018).

“AML is a serious diagnosis and patients require immediate and intensive treatment. Because of the acute nature of the disease, there is much to be learned about the patient and caregiver experience with AML,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “This new study gives us the opportunity to learn more from patients about the full spectrum of their experience and allows us to address their concerns through our support services, educational materials, and by informing public policy.”

The Cancer Experience Registry: AML will explore the patient experience on several different topics, such as, their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its partners.

The Cancer Experience Registry: AML was created thanks to support from inaugural sponsors, Astellas Pharma Inc. and Jazz Pharmaceuticals. First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 13,000 patients, survivors, and caregivers. The Cancer Experience Registry: AML is the 11th in a series of specialty registries hosted by CSC.

“We are proud to work with CSC to create an important resource to help AML patients and their loved ones navigate the physical and emotional challenges of this rapidly progressing and life-threatening blood cancer,” said Steven Benner, M.D., senior vice president and global therapeutic area head, Oncology Development, Astellas. “By generating actionable data to inform programming and scientific discourse, we believe this registry may help contribute to creating a brighter future for AML patients.”

“At Jazz, our passion for addressing patients’ unmet needs drives our day-to-day activities and fuels our commitment to raising awareness about conditions like AML,” said Allen Yang, M.D., Ph.D., vice president and acting chief medical officer of Jazz Pharmaceuticals. “We are pleased to support this ground-breaking hematology initiative and we thank the patients and caregivers for their willingness to share their experiences with AML.”

About Astellas

Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. For more information, please visit our website at www.astellas.com.

About Jazz

Jazz Pharmaceuticals plc (Nasdaq: JAZZ), a global biopharmaceutical company, is dedicated to developing life-changing medicines for people with limited or no options, so they can live their lives more fully and redefine what is possible. As a leader in sleep medicine and with a growing hematology/oncology portfolio, Jazz has a diverse portfolio of products and product candidates in development, and is focused on transforming biopharmaceutical discoveries into novel medicines. Jazz Pharmaceuticals markets Xyrem® (sodium oxybate) oral solution, Erwinaze®(asparaginase Erwinia chrysanthemi), Defitelio® (defibrotide sodium) and Vyxeos® (daunorubicin and cytarabine) liposome for injection in the U.S. and markets Erwinase®, Defitelio® (defibrotide) and Vyxeos® 44 mg/100 mg powder for concentrate for solution for infusion in countries outside the U.S. For country-specific product information, please visit www.jazzpharmaceuticals.com/medicines. For more information, please visit www.jazzpharmaceuticals.com and follow us on Twitter at @JazzPharma.

As research shows more consumers are searching online for health information, this union will deliver innovative digital services for cancer patients.

[Washington, D.C.] – The Cancer Support Community (CSC), an international nonprofit organization, announced today that MyLifeLine, a foundation whose digital platform has been engaged in transforming the experience of cancer patients over the past decade, will join CSC to bring together more than 30,000 patients, survivors, and loved ones in search of connection and community.

The addition of Denver-based MyLifeLine adds to the global network of 190 service locations, including 47 CSC and Gilda's Club affiliates, partnerships with hospitals, and educational resources that touch one million people each year. CSC's role as the leading voice for patients also includes in-depth research and policy advocacy.

"Together, we will build on our shared mission to ensure that no one faces cancer alone, and we will do so in an innovative, groundbreaking way," said Kim Thiboldeaux, CEO of CSC. "We will transform the way individuals whose lives are disrupted by cancer get information and build a community of friends and family to help them through this experience. We will also increase the patient's voice in policy debates and form new partnerships with corporations, foundations, and other organizations."

Marcia Donziger, a cancer survivor whose personal experience and that of her friends inspired the creation of MyLifeLine 10 years ago, will join CSC as Vice President, Digital Strategy and Business Development.

"I believe this collaboration is a major victory for people impacted by cancer. As a cancer survivor, I know firsthand the stress, anxiety and isolation that cancer inflicts upon patients and their families," Donziger said. "MyLifeLine was created as a gift for all patients diagnosed after me. I wish I had a tool like MyLifeLine to help me coordinate the care and support I needed. The Cancer Support Community elevates the MyLifeLine community in a meaningful way by integrating their award-winning cancer education materials and personalizing the resources based on everyone's unique situation. This new endeavor is a dream come true for me as I have admired the work of Cancer Support Community for decades."

Thiboldeaux and Donziger said they are committed to a seamless transition that engages the individuals and groups that rely on both organizations' services. For more information.

NEW YORK– (June 26, 2017) – The Biden Cancer Initiative today announced Kim Thiboldeaux, CEO of the Cancer Support Community (CSC), along with other national leaders in the cancer field, has been selected to serve on the Initiative’s Board of Directors.

In his final State of the Union address in January 2016, President Barack Obama tasked Vice President Joe Biden with leading the Cancer Moonshot, a national effort to dramatically accelerate progress toward cures and achieve ten years of progress in five. Through the Biden Cancer Initiative, Vice President Biden will continue his work to reimagine how the government, academia, non-profits, and private sector can better organize their resources and systems to collaborate to take on cancer.

“The Biden Cancer Initiative is honored to have Kim join our board. As head of the largest professionally-led nonprofit network of cancer support organizations worldwide, Kim has a wealth of knowledge about the true experiences of cancer patients and their loved ones. Understanding the cancer experience from the patient’s perspective is essential to improving care—and caring—for cancer patients. Her personal experiences will help us achieve the Biden Cancer Initiative’s goals; they remind us to never lose sight that our work is in the service of all people who have been diagnosed with this life-threatening disease,” said Greg Simon, President of the Biden Cancer Initiative.

“It is an honor and a privilege to be asked to serve on the Board of the Biden Cancer Initiative,” commented Thiboldeaux. “No one knows better the importance of this work than Vice President Biden. His leadership and passion, combined with his personal experience as a caregiver and a father who lost his son to cancer, makes him the perfect person to continue this vital work to end cancer as we know it.”

Thiboldeaux joined The Wellness Community in 2000 as President and CEO. In 2009, The Wellness Community and Gilda’s Club joined forces to become the CSC, where Thiboldeaux has maintained her role as CEO. Thiboldeaux helped CSC become one of the largest providers of social and emotional support worldwide, advancing the idea that psychosocial care is as important as medical care in the face of a cancer diagnosis. CSC provides social and emotional support through a network of more than 50 local affiliates, more than 100 satellite locations and online. The organization also maintains a Research & Training Institute in Philadelphia and a Cancer Policy Institute in Washington, D.C.

The study will examine care options, quality of life and other issues impacting patients

PHILADELPHIA, PA– (Sept. 9, 2019) –The Cancer Support Community (CSC), a global nonprofit, is expanding its innovative patient experience work by launching a new research study to capture the patient experience of those diagnosed with liver cancer.

“Liver cancer is a critical illness that often has unique challenges,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “Because there is so little research around liver cancer, this new initiative will help us better understand how health care providers can solve the unmet needs of people living with liver cancer around topics like broad cancer care, quality of life, and managing other chronic diseases in addition to their cancer.”

The Cancer Experience Registry: Liver Cancer will explore the patient experience on several different topics such as their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its health care partners.

First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 14,000 patients, survivors, and caregivers. The Cancer Experience Registry: Liver Cancer is the 13th in a series of specialty cancer registries hosted by CSC. It was created thanks to support from Genentech, a member of the Roche Group.

CSC is grateful for the work of The Bili Project Foundation, Blue Faery: The Adrienne Wilson Liver Cancer Association, and the Global Liver Institute, who have partnered to help with this project.

Patients and caregivers can access the registry and share their story by creating an account at https://www.cancerexperienceregistry.org/.

The Cancer Support Community Delivers Groundbreaking Immunotherapy Support and Education Program to Patients and Providers

Cancer Support Community launches first-of-its-kind immunotherapy pilot program in partnership with cancer centers in Colorado, Mississippi, New York, Ohio, Tennessee, and Washington

WASHINGTON, DC — The Cancer Support Community (CSC), an international nonprofit, today announced the launch of Immunotherapy & Me, an innovative program to support the unique needs of patients receiving immunotherapy treatment, and the clinical staff who care for them. The program aims to identify and implement patient-centered practice solutions across the continuum of immunotherapy care.

“The Cancer Support Community sees that immunotherapy is greatly impacting how we treat cancer, with marked advances in the treatment of lung, melanoma, genitourinary, hematologic, head and neck cancers, and more,” said Kim Thiboldeaux, CEO, Cancer Support Community. “This is why we are so excited to work with our pilot partners to improve the experience of patients receiving immunotherapy and to help establish clinical practice tools to advance quality care.”

Immunotherapy uses the body’s own immune system to fight cancer. Given the unique way immunotherapy engages the immune system, recognition and management of side effects can be challenging. Patients and health care teams share the responsibility of promptly reporting treatment-related symptoms, however, patients often require additional education, support, and resources to become active partners in their care.

Immunotherapy & Me addresses this by empowering patients to promptly report treatment-related side effects and by providing staff the resources to streamline patient education around symptom management. Immunotherapy & Me will be piloted at nine oncology practice sites for twelve months, including the collection and reporting of patient outcomes. A core component of this initiative will be assessing patient levels of distress using CSC’s CancerSupportSource® to document program impact on the overall patient experience. Immunotherapy & Me offers patients and staff three categories of activation tools: a web-based app to monitor treatment-related side effects; educational materials that are both immunotherapy-specific and general cancer information; and an expansion of CSC’s existing Cancer Support Helpline to include registered nurses to assist patients and families with concerns related to their clinical care.

“The tools and framework the Cancer Support Community provides through the Immunotherapy & Me pilot are invaluable to our team of physicians, nurses, social workers, navigators, and researchers,” said Dr. Lee Schwartzberg, MD, FACP, medical oncologist and Executive Director of the West Cancer Center based in Memphis, Tennessee. “By engaging a wide-variety of touchpoints—on-site, online, and, over the phone—we maximize patient engagement, can better monitor patient progress, and hope to improve patient outcomes.”

CSC is partnering with nine highly regarded oncology practices for this pilot. These practices allow CSC to bring interventions to immunotherapy patients at the point-of-care while reaching geographically and demographically diverse patient populations. These pilot sites are:

Catholic Health Initiatives

• Harrison Medical Center – Bremerton, Washington
• Harrison Medical Center – Poulsbo, Washington

Centura Health

• Littleton Adventist Hospital – Littleton, Colorado
• Parker Adventist Hospital – Parker, Colorado
• Porter Adventist Hospital – Denver, Colorado

OHC (Formerly Oncology Hematology Care, Inc.)

• OHC West Office – Cincinnati, Ohio

Roswell Park Cancer Institute – Buffalo, New York

West Cancer Center

• West Cancer Center: Corinth – Corinth, Mississippi
• West Cancer Center: Wolf River – Memphis, Tennessee

The Immunotherapy & Me program is made possible through the generous financial support of Bristol-Myers Squibb.

San Francisco, California- [January 25, 2018] - The Cancer Support Community (CSC) announced today at the 2018 ASCO-SITC (American Society of Clinical Oncology-Society of Immunotherapy of Cancer) Clinical Immuno-Oncology Symposium the results of its survey analysis assessing the needs of immunotherapy patients, caregivers, and health care providers.

The survey’s release comes on the heels of a Washington Post story earlier this month examining patient reactions to immunotherapy treatments. The CSC survey, which was conducted in early 2017, sought to better understand and identify key areas of concern or gaps in knowledge and patient care related to immunotherapy as identified by patients, caregivers, and health care providers.

“The findings highlight the need for easily accessible and comprehensive information on immunotherapy,” said Linda House, CSC president. “The Cancer Support Community is committed to providing this solution through our innovative Immunotherapy & Me program that supports the unique needs of patients receiving immunotherapy treatment and the clinical staff who care for them.”

The CSC materials will be an important tool for the patients, caregivers, and providers who revealed the following experiences in the study:

• Most patients (52.4 percent), and nearly 40 percent (39.3 percent) of caregivers, reported that understanding how immunotherapy works and managing treatment-related side effects were ‘quite a bit’ or ‘very much’ of a problem during immunotherapy treatment.
• Among health care providers, about 40 percent indicated that understanding how immunotherapy works and managing treatment-related symptoms and side effects are ‘quite a bit’ challenging for their patients; nearly half (48.7 percent) also stated that finding support with issues related to cancer care was also ‘quite a bit’ challenging for their patients.
• 60 percent of caregivers and nearly 45 percent (44 percent) of patients stated that an online tool/website to manage their immunotherapy (IO) treatment would be ‘quite a bit’ or ‘very much’ helpful to them.
• Nearly 30 percent (29.8 percent) of patients and 50 percent (48.2 percent) of caregivers reported that they would be willing to use an online tool to help manage their, or their loved ones, immunotherapy treatment on a ‘weekly’ basis.
• Of note, almost 90 percent (86 percent) of health care providers reported that they were ‘quite a bit’ or ‘very much’ likely to refer patients to immunotherapy and cancer-related print materials. Well over half (59.3 percent) stated that they were ‘quite a bit’ or ‘very much’ likely to refer their patients to an online tool to help manage their immunotherapy treatment.

House shared the findings at 2018 ASCO-SITC Clinical Immuno-Oncology Symposium. The full poster as presented at the Symposium is available online. The CSC website includes additional information about the Immunotherapy & Me pilot program.