Susan’s Research Miracle
Thanks to cancer research, Susan “Sue” Hill was here to celebrate her 50th wedding anniversary. She’s had 15 precious years with her daughter and was here when her granddaughters were born. She’s become a mentor and friend to people with cancer all across the country.
Thanks to cancer research, Sue is alive today—and thriving.
Sue’s research miracle came through a clinical trial for the drug Jakafi (ruxolitinib). It works by targeting proteins known as Janus kinases, or JAKs, which control the production of blood cells. Sue has primary myelofibrosis (MF). It’s a rare blood cancer—only about 18,000 people have been diagnosed with it in the United States. Today MF is considered a chronic, progressive, yet manageable disease, but when Sue was diagnosed in 2001, MF wasn’t even classified as a cancer—and it was considered terminal. That’s how far we’ve come—thanks to cancer research.
She was told there was nothing to be done but treat the symptoms, but she wasn’t satisfied with a death sentence. She sought out Dr. Thomas Beck, a longtime, widely respected oncologist who was then the medical director of St. Luke’s Mountain States Tumor Institute (MSTI).
“I needed someone who wouldn’t give up on me, who would advocate for me,” Sue says. “That person was Dr. Beck.”
Dr. Beck found the ruxolitinib trial for Sue, and she’s been on the drug ever since. It’s literally keeping her alive. Susan Mahoney, clinical research coordinator at St. Luke’s MSTI, has been with Sue throughout her journey, and organized her participation in the trial. “Dr. Beck and Susan are my guardian angels,” she says. She’s also a big fan of her current oncologist, Dr. Benjamin Bridges, who took over her care after Dr. Beck retired.
Today Sue is a very active advocate for people with myeloproliferative neoplasm (MPN) diseases and other cancers. She started a local support group and works with Incyte, the company that makes Jakafi, telling her story and educating others with an MPN diagnosis. She serves as a mentor for new and ongoing patients through the Leukemia & Lymphoma Society, Imerman’s Angels, the MPN Research Foundation, and MPN Advocacy & Education International. She also finds time to volunteer every Friday with St. Luke’s tiniest patients in the Newborn Intensive Care Unit.
She offers hope to others, letting them know they’re not alone, and showing them they can have many good years ahead. “I’ve been able to be part of my granddaughters’ lives, now eight and nine years,” Sue says. “My goal was seeing them get to kindergarten—now it’s seeing them on their way college.” Thanks to cancer research.