• Advocating for research
• Coaching other patients
• Raising awareness
We contacted some of the people who told their stories in the first two years of the video series. Here are updates from five Survivors.
Pancreatic cancer impacted Roberta years before her own diagnosis, losing her father, uncle, and before that, her grandmother. So when she began having vague symptoms, she insisted on being tested for the disease.
It’s hard to believe my family and I have been fighting, surviving, and living with pancreatic cancer for 20 years. I say my family and I because pancreatic cancer does not just affect the patient/survivor but the whole family. My sons are healthy, successful, and in good relationships. Vic and I have been together for 52 years and married for 47. It’s funny, when we talk about survivors he jokingly wants to be acknowledged as a survivor since he’s survived being married to me for so long!
We tend to put off doing things we want to do when we are not facing life-threatening situations because we think there is plenty of time down the road to do these things. I was guilty of this until I was faced with this deadly disease. Since my diagnosis, I completed my first half marathon, got my first tattoo, jumped ten times from a “not so perfectly good airplane” and I’m already planning jump number 11!
I’m very active in volunteering. I’m a member of a Pancreatic Cancer Survivor Council, a Patient Research Advocate, and most recently Executive Producer and Host of a podcast live-streamed on a local radio station. Understand I didn’t know what a podcast was, I had never listened to one. The podcast, “Living Hope; Your Journey with Pancreatic Cancer” shares the journey of those affected by pancreatic cancer. I want to bring awareness, give hope and inspiration to those affected. We air live every Thursday at 11 am PT on OC Talk Radio; we also stream live on our Living Hope Facebook page. Older episodes are available at many places you can find podcasts and on our Living Hope website.
For reasons unknown to myself or my medical team, my tumor became dormant and my last chemo treatment was in December 2018. I hope others will see that we are survivors, and we can live and thrive with pancreatic cancer.
After his pancreatic cancer diagnosis in 2012, Steven discovered that he had family members who carried the BRCA2 mutation. This made him eligible for certain clinical trials.
I celebrated the 10th anniversary of my Whipple surgery in June 2022. I have been NED (no evidence of disease) since 2016, despite originally progressing to metastatic disease to the liver. I was the first pancreatic cancer patient in the world to participate in the PARP-1 inhibitor clinical trial testing Rubraca. I am still taking the oral medication (for almost eight years) as maintenance monotherapy, which makes me the longest pancreatic cancer patient on the drug.
Pancreatic cancer advocacy has become an important part of my life. I serve as a patient and caregiver mentor and the Outreach Chair of the New Jersey affiliate of the Pancreatic Cancer Action Network (PanCAN). In February 2020, I gave the Word of Welcome at the third World Pancreas Forum in Bern, Switzerland. I retired from my job in January 2022, and am now very active as a patient research advocate serving on the GI Cancers Committee of the Eastern Cooperative Oncology Group (ECOG) and the Hematology/Oncology Pharmacy Association (HOPA).
When not involved with pancreatic cancer activities, I make extended trips to Switzerland relaxing with family, friends, and old work colleagues.
Camille got a second opinion and changed doctors to get treatment from someone who believed in treating her.
I am happy to report I am now a 10 year stage IV pancreatic cancer survivor. Since my recovery I have spent the last seven years fundraising and bringing awareness to pancreas cancer.
Because of these activities, patients have reached out to me from all over the U.S. and beyond. I spend the majority of my time coaching patients through their treatments. In addition, I help patients get a second opinion and “match-make” like patients so they have a concrete support system.
I believe that it’s important for patients to see good outcomes.
Ed had a number of symptoms that he attributed to overwork. Then he developed jaundice and it became clear something was seriously wrong.
Life since pancreatic cancer in 2008 has been good. In 2018, Kathie and I celebrated our Golden Wedding Anniversary—we have now been married more than 54 years! Our family has expanded to include five more grandchildren, so we now have twelve.
Swimming continues to be an important part our lives. Kathie and I both work at the State College Branch YMCA, where she is a swim instructor and swim stroke consultant, and I am one of the Head Lifeguards. I have resumed open water racing, representing Kimmer Aquatics (named for a neighbor, Kim Lichman, who is a survivor of colon cancer)—team membership is limited to our family. Since 2015, I have swum the Golden Gate Bridge two times (20 times total since 1965), Alcatraz once (five times total since 1965), and one time each for the Statue of Liberty, Misery Island in Massachusetts, Walden Pond in Massachusetts, and a 10K from the Golden Gate Bridge to the San Francisco Bay Bridge. Remarkably, I still hold the record for a round trip swim on the Golden Gate, a swim I did in 1965.
Since 2015 we have also become hikers and bikers, with a goal of hiking to the many waterfalls in Pennsylvania. We have been able to travel—Scotland, New Zealand, Ireland, Canada, and in July 2022 Cancun, Mexico, where we swam with whale sharks.
I remain in regular contact with Dr. Dean Nora (now retired), the Kaiser surgeon who did my Whipple procedure in 2008. Due to the continuous support and love of my family, the skill and caring by Dr. Nora and the Kaiser staff in 2008, and the skill and caring of the Geisinger physicians and staff, I have a remarkable retirement and life.
After surviving her four-year pancreatic cancer treatment journey, Laurie turned her sights on advocacy, working with organizations, patients, doctors, and pharmaceutical companies to bring about better treatment options.
As a 16-year survivor, I am grateful for every day; challenges are viewed through a different lens. I am passionate about my cancer advocacy and continue to provide patients coaching sessions, helping them take charge and be an active participant in the healing process.
I am a member of the board of directors for PRECEDE (Pancreatic Cancer Early Detection Consortium) at NYU Langone Cancer Center, an international, multi-institutional collaborative initiative for early detection of pancreatic cancer.
I am participating in a research advocacy program at UT Southwestern Medical Center in Dallas, Texas, helping to bring the community voice to research from a patient’s perspective. I am the pancreatic cancer moderator for CancerConnect, an online cancer support community for 36 cancers.
I consult with La Roche-Posay who is developing a new skincare line of products for cancer patients. Contributing with a small group of survivors, we offer our impressions and suggestions for marketing and impacting the cancer community in offering much needed help for self-care!
Now that things are opening after COVID-19, I have had opportunities to deliver a few speeches and work with genetic testing companies and pharma. A friend, Tina Staley (licensed therapist and social worker for over 30 years) and I have designed a cancer workshop, Thrive with Cancer, starting September 27.
I relocated to Dallas knowing only two people just before COVID-19 hit. The pandemic created abundant challenges, but I have made a fulfilling life with engaging and kind new friends. I was diagnosed with endometrial cancer two years ago. Honestly, after undergoing the Whipple and having pancreatic cancer treatment for four years, this was very manageable. I am healthy, active, and have not been on any pancreatic cancer therapy for the last 12 years.
I am grateful for the continued support of my healthcare professionals, support organizations, friends, and family. We only have this moment, sparkling like a star in our hand and melting like a snowflake. My mantra is: Postpone nothing—appreciate everything!