Survival Only the First Step in Leukemia Battle : City of Hope Seeks to Conquer Long-Term Side Effects of Childhood Treatment

She is 18, her doctor says, a victim of childhood leukemia who has beaten the disease and has matured into a beautiful, brilliant young woman.

The young woman is among a growing number of people who are surviving leukemia to adulthood, says the doctor, Robert B. Rosen, senior physician in the department of pediatrics at City of Hope Medical Center here.

But in one respect, the young woman is different from many survivors, Rosen said: She apparently has suffered no long-lasting side effects from the radiation treatment that was used to save her life.

Rosen said the national cure rate is now 60% among childhood leukemia victims, but a large number suffer long-term side effects, including abnormal growth of the jawbone, cataracts, thyroid cancer and disturbance of the pituitary gland, so the child does not achieve normal height or normal puberty. Learning disabilities are common.

Survivors Studied

So Rosen and his colleagues at the City of Hope, a national medical and research institute that specializes in major diseases, are attacking childhood leukemia on two fronts: They are studying the long-term survivors while trying to develop less drastic methods that are just as effective at saving lives.

City of Hope is the only center in the San Gabriel Valley doing such research, but it is among a number of research centers nationwide involved in the problem. Childrens Hospital in Los Angeles is one of them.

City of Hope, which provides free patient care, has an annual operating budget of $90 million. The budget for the leukemia program is about $1 million a year.

At City of Hope, Rosen is assisted by a team that includes ophthalmologists, cardiologists, neurologists, psychologists and a dentist.

“We know learning problems are tied to cranial radiation,” Rosen said, “so now that the shadow of suspicion has fallen on radiation, we almost don’t use it.

“We are now using radiation-free methods such as new forms of chemotherapy, a chemical treatment for the disease. They may produce the same results as radiation, but the effects may be much more transient.”

Rosen uses the word “may” because it will be many years before the long-term effects of new medications are known.

46 Alive and Well

He and his colleagues are studying a group of patients treated between 1972 and 1979. In that study, which initially included 66 patients in the group, 46 are alive and well, with the disease in remission. The others have either died or City of Hope has lost track of them.

There are 50 children in the medical center’s leukemia program. Each child comes in weekly for 2 1/2 to 3 years, Rosen said. After that time, therapy is stopped. About one in five children suffers a relapse, Rosen said, and treatment for them is resumed.

“We have to treat a child longer than he has evidence of the disease,” Rosen said. “What we do not have is a means of detecting small numbers of leukemic cells in the bone marrow.” He said that if doctors had a means of detection, they would treat the child only one year and then could know if that was long enough.

Childhood leukemia can occur in a child from infancy through the teens, according to Dr. David J. Lang, chairman of pediatrics, but the peak age is 2 to 4.

In recent years, there has been no significant change in the occurence of leukemia in the United States, he said. Among Caucasians--its principal victims--the disease strikes 38 children a year for each 1 million in the population. Lang said it is mostly a white middle-class disease, apparently because of genetic and environmental factors.

“It is the most common childhood cancer, but it is a rare affliction,” he said.

‘Job Is Life and Living’

The emotional and intellectual consequences of the illness can have long-term effects, said Morris Powazek, director of the pediatric psychology department.

“When I first started 15 years ago working in children’s cancer hospitals, psychologists helped prepare the children to die,” he said. “Progress has changed my job. Now my job is life and living rather than death and dying.”

Powazek said learning disabilities affect about 50% of long-term survivors.

“The development of children is dramatically affected by the disease and treatment,” he said. “Our studies show a high rate of learning disabilities, but it is hard to say what aspect of the disease or treatment is responsible.

“The result can be nasty kids with behavioral disorders. Intellectually, they are OK, but they are several years behind where they should be in school. Once the children are placed in remedial programs, the behavior problems are much better.

Powazek said it is important to get the children back in school as fast as possible after they begin treatment.

“Very few children feel good about themselves if they don’t return to school soon, usually six months after diagnosis,” he said. “They have to be with other children to be emotionally healthy, so school reintegration is important.”

Not all patients have problems. Rosen said that one of his former patients, who is now in his late 20s, is a pediatrician. Another is studying for the priesthood.

But, said Rosen, “occasionally we have a catastrophic event. Last year we had a suicide. The patient had been in complete remission and was in college when he met a girl who did not return his love.”

Must Learn to Adjust

Rosen said he did not know what effect, if any, the leukemia played in the patient’s suicide, but noted that the young man was pessimistic by nature and easily depressed.

Powazek said children with leukemia also have to learn to adjust emotionally if their adult lives are to be normal. The older the child, the poorer the prognosis, Powazek said, because the very young children have no fear of death.

“But no matter what the age of diagnosis,” he said, “most of the long-term survivors are in the mainstream of life and are well functioning young adults.

“How a child handles anxiety has a great deal to do with how they are as adults. Some use cancer as an excuse for not functioning well while in others the cancer makes them grow up faster.

“Most long-term survivors are not preoccupied with cancer, but in the back of their minds they know their disease could come back even though it is unlikely. One sign of progress is when they plan ahead instead of living one day at a time; when they recognize that the world is stable rather than fragile.

“The kind of personality they have plays a big part in how they handle the stress.”