As members of the PanCAN Survivor Council, we serve as ambassadors of hope for anyone affected by pancreatic cancer. We recognize the importance of not going through this journey alone, and the special bonds that form between survivors because of our unique and broad range of experiences. We bring optimism, positivity and community to anyone affected by this disease.
PanCAN is the go-to organization for the pancreatic cancer community and we proudly serve as a bridge between PanCAN and what’s happening locally. We are here for survivors across the country and refer them and their families to PanCAN Patient Services for free resources and support. We represent the voice of survivors and are committed to ensuring that the survivor perspective is integrated into all that PanCAN does.
Anggie has always led an active and healthy lifestyle, so it was a complete shock to her and her family when at 32 years old she was diagnosed with pancreatic cancer. Her journey began in 1996 - she was out with her husband for one of their regular runs when she collapsed and could no longer continue. The nagging pain emanating from her abdomen to her back became excruciating.
She went to her doctor, who told her that she likely had the stomach flu and recommended an over-the-counter medication. Two weeks later, after experiencing a 15-pound weight loss, she knew she was facing something more serious. After insisting that she see a specialist, she was finally referred to an incredible gastroenterologist who was tenacious and would not give up in determining the cause of Anggie’s condition.
For several months, Anggie underwent a range of procedures, including an ultrasound, endoscopy, colonoscopy, MRIs, CT scans and octreotide scans. It was finally confirmed that the strange shape discovered during the ultrasound of her pancreas was actually a pancreatic neuroendocrine tumor the size of a golf ball.
Within a few days she was in surgery for a distal pancreatectomy. Luckily, her tumor did not metastasize, and she did not require additional treatments. But this traumatic experience left more than the scars of surgery. Anggie felt a deep sense of survivor’s guilt. She eventually chose to channel that energy by volunteering with PanCAN, through which she gives hope to those newly diagnosed. Anggie believes that by being an active part of this community she can help find better treatments that offer a greater chance at survival for patients.
After surgery which removed a third of her pancreas, Anne continued her treatment with chemotherapy and radiation, followed by more chemotherapy. Throughout treatment, she continued working full time as vice president of treasury at Marriott International, while taking care of her young family.
Her oncologist referred her to the Pancreatic Cancer Action Network's (PanCAN) website. In 2009, when PanCAN's National Capital Area Affiliate began planning the first PurpleStride Washington, D.C., Anne began her active involvement as a PanCAN volunteer. Over the years, Anne has served as the emcee for PurpleLight and participated in National Pancreatic Cancer Advocacy Day. She even swam 1-mile in the Chesapeake Bay for PurpleSwim – twice!
Today she continues to help organize PurpleStride Washington, D.C. and represent the affiliate as its media spokesperson. Anne currently works as vice president of finance for PM Hotel Group.
He checked into Suburban Hospital in Bethesda, Md., where they diagnosed a stage II tumor in the duodenum. One week later, Clayton was transferred to Johns Hopkins Hospital for the Whipple procedure. During the six months of chemotherapy that followed, he continued to work as an IRS tax compliance officer.
Clayton decided to get involved with PanCAN because of PurpleStride and its four-star Charity Navigator rating. He has served the PanCAN Philadelphia Affiliate for eight years as a PurpleStride participant, PurpleLight organizer and advocate, and he most recently volunteered as the affiliate’s Advocacy Chair. He’s been a regular participant at PanCAN Advocacy events in Washington, D.C.
Having been blessed with good health, Clayton tries to give back to those less fortunate by fighting for research funding as well as better treatment options and early detection methods.
Most recently, his life journey has taken him back to Connecticut near his boyhood home. In 2022 he participated in his first PanCAN PurpleStride Rhode Island and he looks forward to continuing his work with PanCAN on the Survivor Council.
Fortunately, the cancer was in just the right place to produce warning signs that sent her with haste to see her nurse practitioner, Judy. After having a few tests, she was scheduled for a CT scan. The news was devastating – she was in shock. Judy told Diane that it wasn’t a death sentence, and Diane hung onto those words over the next 27 months as she and her devoted husband made their way through the jungle of tests, treatments and new terms – terms such as: needle biopsy, CA19-9, adenocarcinoma, unresectable, 5FU, palliative care.
Diane says that despite the pain and worry, the cancer brought with it many blessings. She now lives day to day with gratitude. Having always been a planner and looking far ahead, she often overlooked the present. Cancer took care of that. After diagnosis, her planning horizon was shortened to 3-month increments, from CT scan to CT scan. Sometimes the cancer grew, but when a scan showed that the cancer had not grown much or at all, Diane would feel that she could safely make plans for the next 3 months – until her next CT scan.
Twenty-seven months after she began treatment, she had a PET scan. When she arrived for her chemotherapy appointment later that day, the nurse told her that she would not be having chemotherapy – the cancer was gone! That was a life-changing moment for Diane.
Diane praises God for seeing her through each step of the way, and for guiding her as she moves through life and helps others who have been struck by pancreatic cancer. In 2008, she saw a newspaper article about a meeting for people interested in starting a PanCAN affiliate. Of course, she was compelled to go! She is a founding member of the PanCAN Boise Affiliate of volunteers and has served in various volunteer chair roles related to outreach. She is currently the Mission Chair and has also helped plan all 10 PurpleStride Boise events.
She feels blessed with a meaningful and rewarding career, serving as professor of finance and associate dean for the College of Business and Economics at Boise State University for 32 years and counting. And, she feels blessed by the many dear friends and volunteers she met through PanCAN, who are dedicated to raising awareness and beating the beast we call pancreatic cancer.
The diagnosis came as quite a shock but John, the whole family, and many friends were positive that he could beat this tough cancer… and he did.
After having some fatigue and abdominal discomfort in early 2015, John’s doctor ordered bloodwork and a sonogram and while waiting for the results, his family noticed yellowing of the eyes. He went for a CT scan, which showed a spot on his pancreas. Two weeks later he was undergoing the Whipple Surgery. Chemo followed, and then radiation. Luckily, all went well and John tolerated the unpleasantness, as many have. It’s six years now, and, “Thank God, I feel great,” he said.
John formed “Team WALMSLEY” for PurpleStride Rhode Island, held each year in Warwick, R.I., and he continues to participate and raise money for PanCAN. “They were a great source of help and comfort during those early months of uncertainty and anxiety,” John said. “Thank you, PanCAN!”
John is a musician who plays guitar and piano and sings at many local establishments. In addition, he has been an active member of the music ministry at his church for over 30 years.
He has a great interest in flying and acquired his private pilot certificate in 1975. Although he is no longer actively flying, he goes up any chance he gets and enjoys every minute.
John and Cindy love to travel, hike and ski but mostly they enjoy being together with family and friends.
“POSITIVITY!” John said. “That is the key.”
Joy Faye Heines
A needle biopsy from a surgeon her internist referred her to showed no signs of cancer, but the surgeon said, “Nothing that can grow in the pancreas can be good,” so a Whipple procedure was scheduled after much thought and prayer.
Joy’s Whipple was on November 9, 2004. The surgical biopsy results were clear: pancreatic cancer. All the margins were clean, and Joy was cancer-free. This was certainly reassuring, but the doctor was also clear: “We don’t have very good luck with pancreatic cancer … and you are going to be my poster child for survivors.” Soon, he had obtained approval for Joy to join a study and had assembled an oncologist, radiologist and support teams. Joy’s treatment was to include concurrent daily radiation and three types of chemotherapy for six weeks followed by a month break, followed by two more six-week courses of the same chemotherapies separated by a month’s break. It took 12 weeks to complete the first six-week course of treatment, as two 17-day hospitalizations – one in the middle and one at the end of the treatment – caused the team to say that Joy was done. They explained the treatment had nearly killed her twice and they were not willing to risk it again.
In 2013, Joy discovered and joined a fledgling Pancreatic Cancer Action Network group in Louisville who were amazed that she was a survivor. No one in the group, comprised primarily of family and friends of those who were affected by pancreatic cancer, had ever met someone who had survived that long. As a result of joining PanCAN, she became a beacon of hope to the group and to survivors in the Louisville area.
She served as the chair of the PurpleLight event for the local group and once Louisville was made an affiliate, she quickly stepped up additionally as the PanCAN PurpleStride chair. Her years of experience as a cross-country and track coach and meet organizer made her the perfect choice for that role. She has also traveled to Washington, D.C., at each opportunity for PanCAN’s annual advocacy event and served as the Louisville Advocacy Chair. Joy has received the Randy Pausch Award from PanCAN for her volunteer service. She is dedicated to raising awareness and looks forward to the day when this all-too-often silent killer will be eradicated.
After 33 years, Joy retired from teaching in 2018. She continues to remain as active as ever as a Girl Scout leader, coach of a JCPS affiliated cross-country running club and working at a greenhouse formerly owned by someone affected by pancreatic cancer. Joy and her husband Rob are anxiously waiting for the day they are blessed with some grandchildren!
In 2012, her life changed for the better, as she describes it, at a pancreatic cancer symposium hosted by the Mayo Clinic. It was there that Lisa discovered PanCAN and was inspired to get involved by then-Minnesota Affiliate Chair Brenda Coleman, who also had pancreatic cancer.
Since then, Lisa has served as Minnesota’s PurpleRideStride Chair and Affiliate Chair. She remains active in the affiliate, reaching PurpleStride Grand Club status in 2019 and 2020 for raising more than $1,000 for PurpleRideStride.
The more Lisa got involved with PanCAN and learned about the disease, the more she realized how lucky she was – and notes the increase in survival since she first became a part of her “purple PanCAN family” as a particular highlight.
Lisa became a member of PanCAN’s Survivor Council because she is committed to doing all that she can to make sure that there will be more long-term survivors, just like her. She’s interested in advancing research and is particularly excited about PanCAN’s Precision PromiseTM clinical trials platform. Lisa looks at precision medicine as the future of oncology and is proud to see PanCAN at the “forefront of such an aggressive and hopeful initiative.”
Lisa’s commitment to patients extends to the wider community, as well. In addition to her Survivor Council position, Lisa serves as a patient advocate on several cooperative research group committees, as well as a National Cancer Institute Steering Committee. She’s also a consultant, working with Research Advocacy Network to provide education and resources to patient research advocates.
Lisa lives with her husband, Frank, and their dog, Larry, in the Minneapolis area and enjoys being outdoors – especially when she’s biking and gardening.
Nothing prepared Nick for the news he would receive when he ended up in the emergency room on March 7, 2017. Nick went to the hospital because he couldn't eat, had extreme back pain and simply couldn't wait for his upcoming gastrointestinal (GI) appointment.
The hospital completed several tests in a few hours. When the doctors came in to see Nick, they explained he had a mass on the head of his pancreas that required further study. Nick received an MRI the next day with a rush order on the results. He met with multiple pancreatic specialists and they all agreed with the diagnosis: Stage III inoperable pancreatic cancer (adenocarcinoma).
Nick began his first line of treatment, which was chemotherapy. After just three sessions, a CT scan showed the tumor was shrinking. But Nick's body had a difficult time recovering from the chemotherapy, so his doctors limited his chemotherapy to six sessions. Nick then began five weeks of radiation with a low dose chemotherapy each Monday. After radiation, a new CT scan showed that the tumor had shrunk further and pulled away from the superior mesenertic artery and vein.
In October of 2017, Nick underwent a 10-hour pylorus preserving Whipple procedure. The procedure was a complete success and scans no longer showed any evidence of disease. Nick was released from the hospital just five days after surgery, and he was determined to go home and heal. Thirteen days later, Nick was the survivor speaker at the PurpleStride Philadelphia event.
Nick joined the Philadelphia PanCAN Affiliate in 2018 and is currently the sponsorship chair. For Nick, being an Affiliate member is an honor and a privilege. He attended his first National Pancreatic Cancer Advocacy Day in June of 2018 and will continue to advocate every year until the outcomes for pancreatic cancer patients are radically different. Nick has lost two cousins to pancreatic cancer and his uncle is on hospice care with stage IV pancreatic cancer. It has been difficult to watch family members and friends die from pancreatic cancer, but Nick carries their memories with him each day as a reminder that we must do more.
After Pamela and her family returned home to California, she had surgery to remove the tumor, followed by six months of chemotherapy and six weeks of radiation. A year and a half later, on December 12, 2012, Pamela and her husband welcomed their third child, a healthy baby girl.
Pamela’s husband found PanCAN Patient Services when he researched how to get help. She wishes her doctors had told her about the resources PanCAN offers. After treatment, she got involved with PanCAN.
She shared her story at PanCAN PurpleStride Los Angeles 2013, and she attended PanCAN’s annual advocacy event in Washington, D.C., to urge Congress to make pancreatic cancer research funding a priority. Now, though, she is ready to speak out in a bigger way about the disease. She is sharing her experience more broadly in hopes of helping others who have faced pancreatic cancer, too.
She is also determined to make sure the Black community has more information on pancreatic cancer and the risk factors and symptoms. She was diagnosed early but knows that is rare with this disease, and that it affects Black Americans more than any other racial or ethnic group.
That all came to a pause when in 2003, Paris was diagnosed with pancreatic cancer. Smart enough to accept God’s plan, yet determined enough not to give up, she did not allow her diagnosis to deflate her wonderful spirit. Although she had her moments, she continued to “stay strong.” As an all-around sports fan, watching sports became her distraction during her recovery, helping her to cope when she was unable to participate in any of her normal pastimes.
Paris got involved with PanCAN in 2014 after learning about PanCAN PurpleStride. With her background in finance, members of the PanCAN Philadelphia Affiliate asked Paris to take on the fiscal aspects of the yearly PurpleStride event. In 2020, she was tapped to serve as the affiliate’s Outreach Chair. Her work has helped to expand the organization’s presence locally by building relationships within the community, including nonprofits, healthcare providers and faith-based organizations.
Through it all, Paris’ survivor’s stride has not been broken as she steps up to serve on the PanCAN Survivor Council.
None of this was expected but Randi received amazing care in Oakland, Calif., and continues to benefit from the never-ending support from her family, friends and care team. Her cancer is well-managed for now.
But Randi felt the need to do a little more and to try to pay it forward. Earlier on in her journey, she was thrilled when she ran into a PanCAN booth at a local fair for cancer patients. There she met Krystal, a lead volunteer with PanCAN’s San Francisco Affiliate. They exchanged information and about a year later, in 2019, she joined the Affiliate as the Outreach Chair. She continues to serve PanCAN in that role.
Randi still lives in Oakland and currently works in marketing at a tech company. She loves all that the Bay Area and life have to offer, from functions and fun to drinking and dining. And when she is at home, she enjoys reading DC Comics, tending to her houseplants and watching reality TV.
Ray had an ERCP every six months until his last one in November 2012. Each time the mass had not grown or changed shape and was still benign. However, in mid-February 2013, Ray became jaundiced and had back pain. Ray’s gastroenterologist admitted him, did some tests, and came to talk to Ray in his hospital room to tell Ray he suspected it was pancreatic cancer and that it would need to come out.
Ray’s doctor referred him to another doctor, who confirmed the diagnosis of pancreatic cancer. They scheduled the necessary test and finally surgery. On March 22, 2013, Ray had a total pancreatectomy that removed his pancreas, spleen, duodenum, and some ducts and blood vessels.
Following two weeks in the hospital Ray had six months of chemotherapy and then five and a half weeks of daily radiation with his final radiation treatment on December 23, 2013. A fantastic Christmas gift.
Despite being insulin dependent, Ray has been cancer-free since his surgery.
From their Port Washington, Wis., home, Ray and his wife, Brenda, have been active with PanCAN’s Milwaukee Affiliate since they attended the PurpleLight event in November 2015. Ray remembers Brenda saying to him that there were so few survivors unlike many other cancers, so it was important for them to be involved. Together they have participated in their local PurpleStride and the past two years they have organized PurpleLight as co-chairs. Ray and Brenda attend affiliate meetings and assist the affiliate with other activities and fundraising.
The Shupes enjoy their cottage in northern Wisconsin with their three grown children and their spouses, and three grandchildren. Ray is involved with a nonprofit ecumenical youth ministry in Port Washington/Saukville, and for the last four years he has served as the Board President of the group.
Further, they love fishing, boating and hunting. Now that they are retiring (Ray since 2013, Brenda soon) they look forward to more traveling around the United States.
Reesa was born in New York City, where she lived with her husband of 53 years and her two children before relocating to Florida. Her career with the New York City Public Schools spanned 34 years, including seven years as the principal of a large urban high school in Brooklyn. Reesa earned two master’s degrees from Brooklyn College and Hunter College in New York City.
Reesa is looking forward to being part of the Pancreatic Cancer Survivor Council and considers it an honor to have been chosen.
A 40-year career in clinical cancer, immunology and stem cell research at academic, government and private research foundations in the U.S. and Switzerland has given him a unique perspective on helping others deal with this disease. He is very active in several U.S. and a Canadian-based support group where he explains and answers questions on the biology of cancer, treatments and clinical trials. Steven has received several appointments with various organizations including serving as a patient research advocate on the GI Cancers Committee of the nonprofit cancer research organization ECOG-ACIN, providing input from a patient perspective during the development and revision of clinical trials. Most recent advocacy position is on the Cancer Communications Committee of ASCO.
Now retired from his career in research, Steven splits his time between his home at the New Jersey Shore and visiting family in Switzerland a few times a year. He has contact with patients worldwide and has actively promoted the many programs and services the Pancreatic Cancer Action Network offers.
We know firsthand that not only do people survive pancreatic cancer, but they can also thrive.
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