A new CHOP research program is exploring ways to reduce long-term effects of cancer treatment

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At 8 years old, Raine Talley spent a lot of time in and out of children’s hospitals in Philadelphia and Delaware to get treatment for leukemia, a type of blood cancer that weakens the body’s immune system.

“As a kid, you weirdly accept a lot of stuff,” Talley said. “Like when you’re in third grade, you just get a bone marrow transplant. It’s kind of just what happens.”

Chemotherapy treatment and a bone marrow transplant, followed by radiation, eventually cured Talley’s leukemia. But that wasn’t the end of her journey with cancer.

Over a decade later, while in college, doctors found early-stage thyroid cancer, one of the most common secondary cancers for people who’ve been exposed to radiation, especially as children.

Now at 27 years old, Talley is being treated for kidney cancer, which her doctors suspect may be linked to prior cancer treatment, but can’t prove that with certainty.

“One day, I was rock climbing, living my normal life, and then the next day, I was having some really bad side pain,” she said. “They did a CT scan, and they found a kidney mass. I think that was sort of the full circle moment for me.”

Advancements in cancer treatments like chemotherapy, immunotherapy, radiation, transplants and surgery have allowed more and more children to survive their diseases.

But the same treatments that are saving people’s lives can later cause delayed hormone development, infertility and secondary cancers, or chronic health complications like muscle and bone weakness and impaired vision and hearing.

A new research program at Children’s Hospital of Philadelphia will focus exclusively on the long-term effects of cancer treatment in children and identify interventions that can reduce some of these health complications in survivors as they become teenagers and adults.

“Everyone focuses on the cure, but I think cure alone is absolutely not enough. You need to focus on quality of the cure,” said Sogol “Goli” Mostoufi-Moab, CHOP endocrinologist and oncologist. “When you come to the late effects clinics, you become aware of the many chronic health challenges our survivors experience that impact their day-to-day quality of life.”

Mostoufi-Moab, who is the program director of the new Pediatric Cancer Survivorship Outcomes Research Program, said the project builds upon a long history of research and work at CHOP to study the effects of chemotherapy and radiation, which are extremely effective in curing many kinds of cancers, but they can be harsh on the body.

“The hallmark of early survivorship studies was to really put late effects on the map, to describe, for example, that if you received radiation to the chest, you could develop life-threatening cardiovascular events in early adulthood,” she said. “Now, we have reached a point that we need to focus on the opportunity to stop or prevent many of these late effects from occurring in the first place.”

Cancer survivors often find themselves keeping track of specialist appointments, MRI or CT tests, other medical screenings, bloodwork and additional treatments years after their initial disease was cured or went into remission.

It sometimes feels like a full-time job, said Talley, who has been working at an animation studio in Portland, Oregon.

“People talked about cancer survivorship like, ‘Oh, you’re done. You survived.’ And like, ‘Everything’s good now, you’ve done it,’” she said. “And really, the most work is after.”

Constantly being on the lookout for a long list of potential late-term effects from her prior cancer treatments can be overwhelming, Talley said.

“Sometimes you feel like, is this just the cut and paste list that they give to everyone or am I specifically at a high risk for these types of things? Like, do I actually need to be worried about that?” she said.

Navigating the years and decades after surviving cancer can come with burdens and challenges that extend beyond the medical aspects, Mostoufi-Moab said. These challenges can impact mental health, lifestyle, financial stability, social life and more.

“I think it can really be a challenge for a young adult survivor of childhood cancer to feel like they are having the same adulthood experience as their peers,” said Mostoufi-Moab.

The first time Henry Korneffel realized that he was different than his peers was when he was a child and getting treatment for juvenile myelomonocytic leukemia, a rare form of the disease.

“It was probably kindergarten, first grade, and I had to have a feeding tube all the time, and I remember I’d have to skip school sometimes to get it changed,” he said.

Korneffel and his family lived in Colorado, but his parents brought him to CHOP for treatment, which included chemotherapy, full-body radiation, a bone marrow transplant and a partial splenectomy over the course of several years.

The treatment plan cured his leukemia, but it later caused delayed growth and hormone development as Korneffel aged, and he needed to take medication to help.

When he was 18, Korneffel was again diagnosed with cancer. This time, it was a tumor in his right thigh that was successfully treated with chemotherapy and surgery, but that left him with some swelling and nerve damage to this day.

Now 24 years old, Korneffel lives and works in Los Angeles. He hopes cancer treatment is behind him, but he knows that all his past treatments still put him at a higher risk of future health complications.

“I don’t think that dread really ever goes away,” he said. “But you need to find things in life that really bring you joy. I’m lucky I’ve had such an incredible time finding new friends, being in a new city and having a medical system behind me that is so supportive.”

For Talley, she said surrounding herself with family and friends, staying present and not stressing too much about what’s ahead helps her manage the daily challenges of surviving cancer each time.

“I like to kind of know what’s coming up, but sometimes you don’t know that and you just have to take what you can get,” Talley said. “You have to let go of that kind of control, because you don’t have it. That’s something I am definitely working on.”