St. Jude for LIFE

Thus far, nearly 900 adults have returned to St. Jude as participants in a unique follow-up study. These patients are continuing their relationship with St. Jude—for life.

In 1986, Eric Blumer’s life was spared. Now he puts it on the line every day.

“I love being a police officer,” says Blumer, who began treatment for acute lymphoblastic leukemia at St. Jude Children’s Research Hospital when he was 5 years old. “Being an officer is my way of giving back.”

Another way he shows his gratitude is through his participation in St. Jude LIFE. Three years ago, the hospital began one of the most ambitious follow-up projects ever conceived—an initiative that brings childhood cancer survivors back to campus to study the long-term effects of their disease and its treatment.

At first, employees, visitors and patient families were surprised by the sight of adult patients strolling the corridors. But now that nearly 900 former patients have returned for St. Jude LIFE evaluations, their presence has become commonplace. Participants even discover they are a source of inspiration to the families.

“A lot of the kids and their parents look at me with my armband, and they say, ‘You’re a survivor?’ Then they want to know my story,” says Heidi Fowler, who received treatment for Wilms tumor (kidney cancer).

“Back in 1975, I had less than 30 percent chance of survival because my grapefruit-sized tumor had been ruptured during exploratory surgery at another hospital,” Fowler says. “I gladly tell families my story, and they say, ‘You’ve given us so much hope.’ That means the world to me.”

Welcome back

When St. Jude opened its doors 48 years ago, children with cancer faced a virtual death sentence. Today, more than 80 percent of those patients survive their disease. Unfortunately, health problems often occur as a result of cancer or its treatment. St. Jude investigators have found that adult survivors of pediatric cancer encounter significantly higher rates of health issues than their peers—problems such as second cancers, an increased incidence of heart and lung disease; and a variety of psychosocial and behavioral issues.

Other institutions have attempted to conduct follow-up studies, but their success has been impeded by their need to rely on surveys and questionnaires to gather data. St. Jude is the world’s first institution to embark on an initiative that provides a uniform clinical assessment for such a large group of childhood cancer survivors.

Researchers expect that results garnered from St. Jude LIFE will help in the development of safer therapies for new cancer patients and will help identify survivors who may be at risk for specific health problems during adulthood. That’s why Jackie Jerry agreed to participate in the study, 30 years after a diagnosis of ovarian germ cell tumor.

“I’ve had no secondary problems as a result of my treatment, but I think St. Jude LIFE is going to be wonderful for a lot of other patients,” says Jerry, who has worked as a nursing care assistant at St. Jude for 16 years.

Unlike Jerry, who has watched the hospital’s growth firsthand, many participants are overwhelmed by changes that have occurred since their departure.

“It was kind of surreal to come back to the hospital. I didn’t know what to expect,” observes Doug Hostetler, a Maryland resident who received treatment for non-Hodgkin lymphoma when he was 11 years old. “I enrolled in St. Jude LIFE for my own benefit—to find out if I had any health problems—and for the benefit of children who will come after me.”

All participants in St. Jude LIFE undergo risk-based assessments based on the specific treatment they received as children. For instance, clinicians evaluated how the therapy Hostetler received in 1983 has affected his heart, bones and neurological system. His testing ranged from a thorough eye exam and bone density analysis to dietary counseling, an echocardiogram and a session with an exercise physiologist.

The frequency of follow-up visits depends on each survivor’s risk profile. Most St. Jude LIFE participants will return to the hospital once every couple of years.

Survivors at risk

The study’s first three years have yielded some startling results, says Melissa Hudson, MD, principal investigator for St. Jude LIFE.

“Of 70 women who were at risk because of chest radiation, we identified nine who had breast cancer,” Hudson says. “This group is considered to have a risk comparable to that of women who have the breast cancer gene. I’m not surprised that they have a high incidence of breast cancer, but I’m shocked that they were either unaware of their health risk or that they simply failed to undergo suggested screenings, which should begin at age 25, or eight years after radiation. Many times, doctors in their communities were not advising the screening, either.”

Hudson admits that community physicians generally encounter few, if any, childhood cancer survivors.

“It’s much more common to see survivors of adult malignancies,” Hudson says. “Childhood cancer survivors have unique health issues. We have to figure out the best ways to communicate that information to health care providers.”

St. Jude investigators are also discovering many cases of heart disease in the study’s participants.

“They have health problems that we typically see in populations that are aging,” Hudson says.

Many survivors are overweight, inactive and have high cholesterol or diabetes—conditions that can exacerbate cancer-related problems such as heart disease.

“We’re seeing these conditions in younger people who generally are not practicing health behaviors that can help reduce or control their risks,” Hudson says. “They need to know how important it is to make lifestyle changes to maintain their health.”

As a result of these issues, St. Jude LIFE investigators are looking at ways to ensure that more survivors receive regular health screenings in their commu-nities, practice healthy behaviors and understand their health risks. Based on data obtained through St. Jude LIFE, researchers are already planning intervention studies.

Helping tomorrow's survivors

Eric Blumer considers himself a lucky man. With a broad smile, he counts his blessings: He is healthy and has a great job and family. His 4-year-old stepdaughter views him as a superhero who “catches bad guys.”

But Eric is not just helping citizens by keeping the streets safe. He’s also helping scientists improve treatment for today’s children and for other adult cancer survivors.

“St. Jude did so much for me,” Eric says. “I figured I could do my part to help them find out what long-term effects may be happening to me and to others. Hopefully, those studies will also help future survivors.”

Reprinted from Promise Spring 2010

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