Some summers are unforgettable. While her days were not always sunny during the summer of 2005, it is a time that remains close to Raine Talley’s heart as a cancer survivor. Toward the end of second grade, it seemed like Talley could not get rid of a terrible cold, but the illness dragging her down turned out to be acute lymphoblastic leukemia (ALL), a cancer of the bone marrow and blood.
Instead of heading off to camp or lounging at the pool like her friends, Talley, of West Chester, Pa., began receiving chemotherapy and then preparing her tiny body for a bone marrow transplant at The Children’s Hospital of Philadelphia in the fall. ALL is the most common form of leukemia found in children, accounting for about 30 percent of all pediatric cancer. It also has one of the highest cure rates of all childhood cancers; currently, more than 80 percent of children with ALL will survive into adulthood. Talley, now 18, remains cancer-free.
As the seasons turn this year, Talley is packing bags, buying books, and getting ready for her first semester as a college student majoring in film at Drexel University in Philadelphia. Her ultimate goal is to make a documentary film that would help others gain a better understanding of childhood cancer and these young patients’ journeys.
“I really identify myself by my history with cancer and how it has affected me,” Talley said. “Because at a young age, I saw of lot of sickness, it gave me a different insight into people.”
One of the ways Talley already has given back to the cancer survivor community is by contributing her time to research projects at CHOP that aim to help investigators learn about the late complications that can follow childhood cancer. A few years ago, she met Goli Mostoufi-Moab, MD, MSCE, an endocrinologist and pediatric oncologist for the Cancer Survivorship Program at CHOP, whose research focuses on why cancer survivors are at risk for poor bone health, given the numerous, complex endocrine abnormalities that can occur after various childhood cancer regimens. Dr. Mostoufi-Moab invited Talley to participate in research studies that involved evaluation of her bone density and body composition.
“It was pretty interesting to see how research can help you in your daily life,” Talley said. “I found out more about why it is important for me to be conscious of my bones and really try to keep them healthy. I think it would be good for others to do research because it can help them know more about their bodies too.”
In an article published in the September issue of Journal of Bone and Mineral Research, Dr. Mostoufi-Moab and colleagues reported that long-term survivors of bone marrow transplants treated with total body irradiation had skeletal complications that included increased marrow adiposity, abnormal bone microarchitecture, and abnormal fat distribution. These factors could affect bone mineral density, a component of bone strength.
“Furthermore, long-term survivors demonstrated sarcopenic obesity, insulin resistance, and vertebral deformities,” the study authors wrote. “Future studies are needed to identify strategies to prevent and treat metabolic and skeletal complications in this growing population of childhood (allogeneic hematopoietic stem-cell transplantation) survivors.”
Childhood cancer survivors demonstrate increasing prevalence of chronic endocrine abnormalities, particularly as they age into young adulthood. Yet, there is a paucity of extended, long-term follow-up survivorship research studies in aging childhood cancer survivors, Dr. Mostoufi-Moab said.
“Motivated survivors such as Raine, who are invested in their health and participate in research studies, provide the foundation to elucidating the long-term effects of childhood cancer therapy,” Dr. Mostoufi-Moab said. “The ultimate goal from survivorship research is to establish better prevention and risk-based screening protocols for childhood cancer survivors. For this reason, the data from survivorship research studies are critical to ensure continued healthcare investment in the follow-up care survivors need, particularly as they transition to adulthood.”