WHEN HILLARY KERPEL FINALLY found the strength to hold a hair dryer and dry her then-9-year-old daughter Lauren’s hair, the achievement was so momentous, she noted it in her diary. “I kissed her neck at the nape,” the Bedford, N.Y., dentist and mother of two wrote in March 1994. “I was touched by the warmth of her body on my lips. How lucky I am to have another chance to enjoy doing this for her.”
Kerpel, 47, has reason not to take this simple pleasure for granted. Diagnosed in 1989 with a rare and deadly bone-marrow cancer, she was given less than a year to live. Today she is in partial remission and credits her progress to a therapy that had never before been tested on humans. Partly because of her success, the procedure, a form of bone-marrow transplant, is now being evaluated in 20 patients by the National Cancer Institute and the Arkansas Cancer Research Center.
Kerpel’s journey into medical history began in 1987 when she started experiencing heart palpitations, visual problems, itchy skin and “indescribable fatigue.” Doctors’ diagnoses ran the gamut from failing eyesight to a prolapsed heart valve. It wasn’t until two years later, after insisting on a blood test, that she discovered the dreadful truth: she had multiple myeloma, a cancer that affects 13,000 Americans a year, of whom only 20 percent will survive four years beyond diagnosis. Kerpel’s outlook was even more dire: Doctors at Memorial Sloan-Kettering Cancer Center in New York City gave her, at most, six months to live. “I said, ‘If I’m dead, I’m dead,’ ” she recalls, ” ‘but I’m not panicking.’ ”
Kerpel didn’t just stay cool, she took charge. First she rejected the chemotherapy recommended at Sloan-Kettering, reasoning that its debilitating effects could be deadly for a patient whose survival prospects were already so dubious. Next she gave herself an intensive course in myeloma. “All I did was read,” says Kerpel, who early on left her practice to concentrate on her health. “I fell asleep reading and woke up reading.” She had further testing done at the Mayo Clinic in Rochester, Minn., and discovered, to her relief, that she suffered from a slower developing form of the disease called smoldering myeloma. Treatment, doctors informed her, could be put off until severe symptoms, like brittle bones, appeared.
By the summer of 1991 these symptoms had arrived, first in the form of intense back pain. Soon breathing, too, became difficult. A tumor 1½ inches long at her sixth rib prompted a return to Mayo in the fall. Here she learned she had developed more than a hundred tiny spinal tumors. (She was immediately given radiation to help shrink them.) By late 1992 the pain had taken over, and Kerpel could scarcely move. She sat propped up in bed with multiple stress fractures in her spine and cracked ribs. “I was a mess,” she says.
Just when things looked bleakest, Kerpel’s husband, Stan, 49, a dentist and oral pathologist, came upon an article in The New England Journal of Medicine describing an experiment that showed that a vaccine for lymphoma—a disease similar to myeloma—was feasible for humans. In December 1992 a frail Kerpel called its primary author, Dr. Larry Kwak, of the National Cancer Institute’s Biological Response Modifiers Program in Frederick, Md. She learned that he had cured mice with myeloma by creating a vaccine from the antibodies of a cancerous mouse, using it to fortify the bone marrow of a donor mouse, then transplanting that bone marrow back to the sick mouse. The Kerpels were impressed. “If there could ever be any such thing as a cure, this was our best shot,” says Stan. Adds Hillary: “I told Dr. Kwak, ‘If you want your patient, you’ve got her.’ ”
Kwak decided to accept the challenge. “This was my opportunity to realize my ideas,” he says. But he, too, was under considerable pressure. He had to produce a human vaccine, and he still had to get Federal Drug Administration permission to experiment on humans. For two months a team of scientists developed a vaccine from a blood protein created by Kerpel’s cancer. Kerpel, for her part, already had a bone-marrow donor, her brother Bruce Harris, an ideal genetic match.
By April 1993 the FDA had okayed the emergency experimental vaccine for Harris, a 49-year-old U.S. Army colonel. He was injected with two doses of the vaccine in Maryland. It was a brave act of brotherly love. Never before had bone marrow been fortified with a cancer vaccine while it was still in the body of the donor. Says Harris: “It was a sweaty-palms decision.” Yet after discussions with his wife, Lorraine, a CPA, and their three grown children, and after being assured by Kwak and other doctors of the procedure’s safety, Harris had decided he would help. “We don’t believe there is a significant cancer risk,” says Kwak, who nevertheless is having Harris’s blood monitored every six months. (Kwak emphasizes that the procedure uses one single protein out of thousands from a cancer cell. “We definitely don’t want people out there trying to apply this approach by injecting themselves with cancer cells. That would be really dangerous,” he says.)
Kerpel’s family has always been close. Born Hillary Harris, she and Bruce, her only sibling, were raised in a loving home in Northport, N.Y., by her mother, Janet Harris, 79, and her father, Sidney, 80, a retired bandleader. A 1969 graduate of Hofstra University in Hempstead, N.Y., Hillary met Stan Kerpel while working as a children’s art therapist. In 1979, after graduating from the School of Dental Medicine at Stony Brook, N.Y., she married him.
The family’s support would see her both through the disease and its painful aftermath. With her mother, brother and husband by her side and her father taking care of the kids at home, Kerpel received her brother’s marrow on April 13, 1993, at the Fred Hutchinson Cancer Research Center in Seattle, a hospital she had chosen because of its success with transplants. Within a month the enriched marrow began overwhelming the myeloma. Yet the recuperation and her body’s struggle to accept the marrow were at times as brutal as the illness itself. “My eyes were yellow, my teeth loose,” she recalls. “I had sores all over. Breathing was painful.” Her bones further weakened by massive doses of steroids, Kerpel broke both hips simply from the stress of trying to sit up in bed. Throughout, she drew comfort from a poster of Lauren, now 11, and son Alex, 13, by her bed. “I would look up at my kids’ faces and say, ‘I’ve got to keep going,’ ” she says. “One hour at a time was my motto.”
On Sept. 6, 1993, Kerpel was released from Hutchinson, and after three months at the Burke Rehabilitation Hospital in White Plains, N.Y., she went home in a motorized wheelchair. Although she had shrunk 3½ inches from vertebrae fractures, her recovery was under way. It would take Kerpel seven arduous months to walk again. She now moves tentatively, with the gait of a much older woman.
Cancer specialists caution that the procedure remains far from established. Dr. Ronald Levy, chief of oncology at Stanford University Medical School, says, “It has to be tried on more people to know if this is coincidence or cause and effect. We think it makes sense but can’t prove it yet.”
Indeed, although Kerpel’s cancer has been under control for two years, her blood still shows minute traces of tumor tissue. As frail as she is, she remains immensely grateful for each day she can embrace life. “It’s amazing that in all this grief, we can find peace, love and meaning,” she says. “I know we’re a stronger family because of this.”
MARIA SPEIDEL in Bedford