From a Grateful Patient
Judy Hileman: Traveling Any Distance for Research and Care
Judy Hileman, a Kansas native with a PhD in nursing who had been a nurse for 50 years and a nurse educator for about half of that time, had endured two grueling and unsuccessful chemotherapy regimens in her home state since being diagnosed in June 2012 with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). The diagnosis itself – which she received on her 70th birthday – had come as a shock to Hileman, who says she had been “healthy as a horse” all her life.
“It resulted in a couple days of stark terror as we (her husband Phil and she) read everything we could find on the Internet and got an appointment with the oncologist who had treated my mom, who had CLL when she was 91,” Hileman recalls.
After a six-month regimen of chemotherapy brought no improvement, her oncologist sent her to Kansas University Cancer Center (KUCC), where she was placed on a second regimen that also failed.
“The second chemo not only didn’t work, but my bone marrow was worse – 95 percent involved after two months,” Hileman says, noting that her doctors determined her cancer cells contained genetic mutations that made her resistant to standard chemo.
Concluding that she needed something other than standard treatment, her KUCC and local oncologists conducted a computer search for clinical trials around the nation for which she might qualify. After considering their options, the Hilemans decided to pursue a study at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James) that was testing the effectiveness of a promising experimental drug called ibrutinib as a targeted agent for patients with CLL/ SLL who have not responded to, or who have relapsed after, standard treatment.
Principal investigator Kami Maddocks, MD, says ibrutinib inhibits a certain protein that is believed to help blood cancers such as leukemia and lymphoma live and grow. “By inhibiting or ‘blocking’ the activity of this protein,” Maddocks says, “it is possible that ibrutinib may kill the cancer cells or stop them from growing.”
After visiting The James for preliminary screenings, Hileman began the trial in July 2013, staying with her husband Phil in their motor home at a nearby campground since regular clinic visits at The James were required for the first five weeks.
“We were immediately impressed with The James,” she says. “Everyone was so informed and caring, from the registration folks to the nursing assistants, nurses and our primary caregivers – Dr. Jeff Jones and certified nurse practitioner (CNP) Mollie Moran. I have never seen a team that works together as well as The James.”
The Hilemans were equally impressed by the trial results. “All the symptoms were gone in four days, and I lost five pounds of tumor mass the first week. After eight weeks, scans showed a reduction in all of my affected lymph nodes by more than 50 percent, and a mass in my lower back, which had never responded to either of the first two chemos, was gone,” she recounts.
By 15 weeks, her lab tests had begun to normalize and she had her energy back, enabling her to resume her “normal life including taking care of the house, cooking, tending gardens, and volunteering at our grandkids’ schools.”
Hileman returned to the James every 3 months for a checkup while continuing on the trial. Unfortunately, on July 7, Judy succumbed to a secondary blood cancer. Her husband, Phil, believes that Judy would still want to share her clinical trial experience as, “She considered it an honor. If it causes one more person to gain access to a successful clinical trial, it was worth all her effort. It gave us ten wonderful months which I will cherish.