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Patients must monitor longterm effects, too

Recent studies show that childhood leukemia now has a cure rate of more than 90 percent and improved survival rates are attributable to clinical trials that help doctors learn the best drugs and doses to treat kids with ALL, better supportive care, improved nutrition, the use of antibiotics, blood transfusions, and more.

In the 1990s, the five-year survival rate was between 70 and 80 percent; in the 1970s, it was only 50 percent and in the 60s, it was close to zero. But the success rate today is reached with the use of highly toxic interventions that put children at risk for other problems as they age.

Because of this, Baystate Children’s Hospital established a Late Effects Clinic to monitor patients.

“The best treatments today for childhood leukemia are very intensive and pretty toxic,” said Satkiran S. Grewal, M.D., founder of the clinic.

Problems can include obesity, bone problems, secondary cancers, learning and memory issues and cardiac problems, among other difficulties.

Doctors make a comprehensive assessment of the treatment used on a particular patient and a list of potential future problems.

“Basically, we make a road map for recommended future screenings into adulthood,” Grewal said. “This patient might need an echocardiogram to check for heart problems once every five years for the rest of his life or an ultrasound to examine the thyroid.”

It is crucial, he said, for doctors to be frank with patients, but also offer hope and optimism.

“Patients and their families need to know that longterm follow-up is required for the remainder of their lives,” Grewal said. “You are walking a tightrope, though. You want to be honest, but you also don’t want them living in fear for the rest of their lives.”

— SANDRA DIAS

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