LCRP Consumer Peer Reviewer
One of Colleen Ziegler’s favorite things to do is spend time with her husband, Tom, and daughter, Taya, at their home in Rochester, New York. When Colleen awoke one night coughing up blood, her world as she knew it changed drastically. A 15-month-long lingering illness, beginning as a slight cough, worsened to a debilitating cough. Colleen first saw her primary care physician, who thought it was allergies and gastroesophageal reflux disease (GERD) symptoms. An allergist diagnosed her with asthma and prescribed inhalers. Two Ear, Nose, and Throat specialists thought it was a voice box disorder. However, the night she woke up coughing up blood, an emergency room visit resulted in a diagnosis of lung cancer with brain and bone metastasis. After a PET scan and brain MRI, Colleen was diagnosed with stage IV lung cancer and given a 3- to 6-month prognosis. While in the hospital, she was given a FISH test to check for any genetic mutations. After 3 weeks of waiting for test results, she was finally confirmed with a diagnosis of stage IV ALK-positive non-small cell lung cancer. As a 58-year-old non-smoker and 15-year survivor of stage II breast cancer, she was shocked to learn that she now had lung cancer.
Knowing she had to take action after her diagnosis, Colleen set out on a mission to find the best course of treatments, believing that clinical trials would give her the best possible chance for longer survival. She was determined to educate herself and others on the disease. She received, and currently still receives, alectinib as her first line of treatment. Colleen has expressed when alectinib no longer works for her, she hopes research will help her carry on, either with a cure or continuing to live a life with cancer.
Prior to her retirement, Colleen worked in sales management for pharmaceutical companies for 22 years. She currently volunteers at a hospice home, and due to her lung cancer diagnosis, she is a lung cancer advocate. In 2021, Colleen joined the Lung Cancer Research Foundation’s (LCRF) ® Board of Directors. She values her work with the LCRF ® and understands, on both a personal and consumer level, the critical need to fund research. She feels that working on this panel allows her to “not waste [her] lung cancer” (a phrase she borrowed from Kirk Smith, a fellow lung cancer survivor). She strives to be an asset to the teams involved in funding research, particularly by helping the review panel focus on research that would address a specific need and have the greatest impact.
Colleen has lived with stage IV lung cancer for over 7 years. During this time, she has educated herself, and now she plays a vital role in educating others.
Her advocacy work includes:
- Co-founder of Life and Breath
- Co-founder of ALKFusion
- Currently active member of Lung Cancer Action Network
- Participating in the Department of Defense Lung Cancer Research Program (LCRP)
- Volunteering with the LUNGevity Peer-to-Peer mentor program
- Participating in the development of patient-focused videos and print materials on lung cancer diagnosis, advocacy, and living with lung cancer, such as the ALK Positivity Videos & Patient Stories - ALECENSA® (alectinib)
- Volunteering with the annual Lung Cancer Voices Summit hosted by GO2 Foundation for Lung Cancer ©
- Co-authored and presented a patient advocacy poster at the 2019 World Conference on Lung Cancer in Barcelona, Spain
Colleen has handled her diagnosis of stage IV lung cancer with amazing resilience. Serving on both the LCRF’s ® Scientific Advisory Board and Scientific Executive Committee this year, she plays a vital role within the foundation. It was through her involvement with the LCRF ® that she was nominated to be a consumer peer reviewer for the Congressionally Directed Medical Research Programs’ LCRP. She is currently serving her third year as an LCRP consumer peer reviewer, reviewing grant applications alongside clinicians and researchers in the field.
“Every panel I participate in has provided me with great insight into the brilliant work that is taking place and gives me hope that the trajectory of this disease is changing course because of the dedication of the scientists who push the research forward,” Colleen said. “Being a part of the LCRP process and working with the researchers/physician scientists on the panel allows me to ‘not waste my cancer’ and be part of the solutions, and not only a person living with lung cancer.”
Colleen has one piece of advice: “Have hope.” She continues to fight daily despite her lung cancer diagnosis, and by doing so, she has made a meaningful impact in the research community.
The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.
Last updated Friday, January 27, 2023