The mission of the Patient Advocacy Committee of the Pacific Northwest Prostate Cancer SPORE is to promote effective interaction and collaboration among investigators, patients and all who are concerned with prostate cancer. Thus the committee transmits the views of patients and members of support groups to investigators in the field of prostate cancer. Simultaneously it communicates to patients and support groups information about current research, especially clinical trials.
We are ourselves working on re-engaging to create a better and more helpful relationship between the advocates and clinicians. As of now, many of the patient advocates are patients who are a part of the prostate cancer community. Our Chair, Marty Chakoian, is the leader of a prostate cancer support group and a member of the “Us Too” leadership.
A note about our highlighted trials and the role of genetics as biomarker for precision treatment in prostate cancer:
We’d like to point out that the selected trials listed here are specifically funded through our SPORE grant and have key translational research aspects. These are only just a small subset of our extremely active portfolio of clinical trial opportunities we have for our patients. Our trials can be broken up into therapeutic trials (some aspect of treatment may be experimental) and/or observational or translational (treatment is standard and patients volunteers to provide their data, e.g. PSA values over time, their feedback such as their quality of life, or their samples, e.g. blood or archived materials). You can find a full listing of our rich clinical trial offerings on the Seattle Cancer Care Alliance website.
The SPORE-related trials listed below are related to genetics and biomarkers. This is not by accident, but because our program has lead much of the research this important, practice-changing area of clinical innovation. In 2015, we helped discover that about a quarter of men have mutation in genes related to DNA damage repair (e.g. BRCA1, BRCA2, PALB2). Moreover, these mutations would likely predict that cancers would be especially sensitive to a chemotherapy called carboplatin and a newer class of targeted pills (PARP inhibitors), including olaparib, rucaparib, and others. This important discovery is the basis for the COBRA study.
Our SPORE investigators are treating physicians at Seattle Cancer Care Alliance and University of Washington.
The inclusion of patient advocates is a crucial element of our Prostate SPORE. Our experienced patient advocates provide assurance that our clinical trials are designed to provide a meaningful patient impact. They also assist with outreach to the prostate cancer patient community and assist with recruitment of patients to our research protocols and clinical trials.
Marty Chakoian is a 17-year prostate cancer survivor and facilitator of the Us TOO in Seattle Prostate Cancer Support Group. In that role he has come to understand the critical role support groups play in helping patients and caregivers navigate the complex decisions around diagnosis and treatment. Marty joined the Board of Us TOO International in 2018 and currently serves as Board Chair, advocating for programs that reduce the racial equity gap in prostate cancer affliction and mortality.
Jack is a 22 year Prostate Cancer survivor, diagnosed with Gleason 9 PCa in April 1999. He became a patient at the UW Medical Center and the SCCA in January 2000. Jack has been an integral and steadfast member of the PNW Prostate Cancer SPORE Patient Advocacy Group since 2002. He is also a long time member of the US TOO Men's Support Group. Most recently, Jack volunteered his time and contributed to a Patient Exercise Video Series aimed to help Prostate Cancer Patients improve their health and overcome treatment side effects via the implementation of an exercise routine.
David was diagnosed with metastatic prostate cancer in 2013 and has been patient at SCCA since 2019. He joined the Patient Advocacy Group in 2020. He is a retired professor with experience in cellular and molecular biology of cancer. Before he retired he held positions at Cold Spring Harbor Laboratory, N.Y. (1981-2004), founding Director of the Sheila and David Fuente Graduate Program in Cancer Biology at the University of Miami School of Medicine (2004-2009), and Professor in the Department of Biological Sciences at the Korean Advanced Institute of Science and Technology, DAejeon South Korea (2009-2019). In addition to scientific research and graduate and undergraduate education he has been involved in outreach programs for elementary through high school students.
Ms. Higgins’ brother was diagnosed with advanced-stage metastatic prostate cancer. Both she and her brother became quick studies of all aspects of an advanced stage cancer moving through a rapid succession of treatments. Working at an outpatient clinic at Harborview Medical Center helped with this intense pace of learning, but in the process gave Ms. Higgins a passion for sharing information with other patients and creating a better patient experience. Also informing her work as an advocate was meeting with senators in Washington D.C. on behalf of the Western Washington’s Alzheimer’s Association requesting additional funding for Alzheimer’s research. Ms. Higgins also has extensive experience in fundraising for non-profits.
Jack is a 23 year PCa survivor. He was Chapter Leader of the Tacoma Prostate Cancer Support for 14 years and has been a member of the SPORE PCa Patient Advocacy committee for more than 20 years.
Jim Kiefert was a longtime PNW Prostate SPORE Patient Advocate, and a beloved member of the Prostate Cancer community. Jim was well known for the smile he shared with all, and for being a fierce fighter in his battle with prostate cancer. Jim was always eager to help others, providing his undivided attention, kindness, and respect. He made an indelible positive impact on countless people in the international prostate cancer community through his dedication, patience, humor, and compassion.
Jim Kiefert was diagnosed with prostate cancer in 1989 at age 50. He had surgery and radiation which did not eliminate the cancer. Jim retired in 2001 as a school district superintendent having spent 41 years in education serving as a math/science teacher, University professor and public school administrator. He was a Fulbright Scholar who studied at the American University in Cairo, Egypt and served as Executive Secretary of the Washington Educational Research Association for 19 years.
Jim credited his prostate cancer diagnosis with changing his life - sparking changes in diet, exercise, stress reduction, spirituality, and focus on the appreciation of the most important things in life. Jim and his wife Maureen had eight children, 14 grandchildren, and six great grandchildren. Together they received ACS M2M facilitator training and became facilitator trainers. They formed and facilitated support groups in The Dalles, OR and Olympia, WA. Jim served on the Board of Us TOO International, including chairing the Board from 2005 to 2007. He also served as Chairman of the Comprehensive Cancer Control Program for the State of Washington, Chair of the Pacific Northwest SPORE patient advocacy group, advisor to the Washington Prostate Cancer Coalition, and a member of the Prostate Integration Panel for the Congressionally Directed Research Programs.
Jim said: "Living with prostate cancer makes you realize that every day is a gift, to be spent wisely."
Exercise can help those living with prostate cancer to overcome the side effects of androgen-deprivation therapy, and it may have helpful effects on cancer biology. Yet many people with prostate cancer aren’t sure how to start an exercise routine. Fred Hutch experts and local patients created a series of videos to show people with prostate cancer how to safely exercise at home to improve their health.