In 1998, a CML patient was out of options. Then she chanced into a treatment—Gleevec

Описание: When Judy Orem learned of her chronic myeloid leukemia diagnosis in 1995, she chose interferon over a treatment that seemed more risky—a bone marrow transplant.

“I don’t think I had any decision to make. I was simply told I was going to do that… It was that or nothing,” Orem said to Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, who is guest editor of the Cancer History Project during the month of June.

Orem ruled out bone marrow transplantation from the outset. Doctors at Stanford told her that she would have a 50% chance of survival during her first year of that treatment. With interferon, she could get three to five years, she was told.

What did it take—and what did it mean—to survive with the disease and treatment at that time?

“We walked out of there, talked about it, and said, ‘You know? I’d rather spend the year feeling OK than to go through all that and 50% chance of dying from the treatment,’” she said. “And so I chose not to do anything other than the interferon.”

Sixteen years earlier, in 1979, Orem saw her grandmother die of the same disease. Treated with chemotherapy, her grandmother experienced fearsome hallucinations and confusion before she decided to quit treatment.

“I was sort of focused on the three to five years, thinking that when it quit, what it might be like—because of what happened with her,” Orem said.

Orem began taking 3 million units of interferon a day, and worked her way up to 9 million—“that way, you’ll be able to tolerate it,” her doctor said.

Meanwhile, a friend of hers in a support group hosted by the Leukemia & Lymphoma Society had a doctor who emphasized how terrible the drug would be, and as a result, Orem said the friend had a hard time tolerating more than 4 million units.

“I made it to the 9 [million] because my doctor told me I could do it and we’d work up to it. I think that positiveness was really good,” Orem said.

Orem stayed on the same dose of interferon until 1998, when a bone marrow biopsy showed that the disease was progressing.

“They probably had about six to nine months left before it would just take over, and maybe they could keep me alive for a year with massive chemo,” Orem said.

Desperate, Orem sought out other options. She consulted doctors at Fred Hutchinson Cancer Research Center to see whether she could be a candidate for bone marrow transplant. This time, doctors told her she had only a 5% chance of survival if she underwent that treatment.

She rejected that option.

“I didn’t realize, at the time, that the interferon had gone in and disturbed the marrow, and it destroyed some of the marrow, and that was why I wouldn’t be as likely to survive,” she said.

“But I had a little ‘but’ there, and that was that Dr. Druker from OHSU had already been studying from the petri dish on up on a new drug for CML.”

The drug was Gleevec, which Orem had heard about from a medical technologist friend who had walked her through much of her treatment.

Orem connected with Brian Druker, director of Knight Cancer Institute at Oregon Health & Science University and Jeld-Wen Chair of Leukemia Research, who discovered the drug Gleevec (imatinib) that would ultimately save Orem’s life.

Human trials for Gleevec didn’t start until 1998—the same year Orem discovered her interferon treatments were no longer working. She decided to participate in the phase I trial at OHSU.

Orem recalls Druker’s humor and commitment to her treatment at the time.

He said, “‘If this doesn’t work, we will do everything we can to keep you safe, to do whatever else, to try to set you up with something, to help you out—because it would really look bad to have you die on the study,’” she said. “I loved that. He was marvelous. He still is marvelous. But that was just enough to say, ‘Yeah, I trust this guy and I want to try his drug.’”

Before beginning the Gleevec trial, Orem consulted with doctors so that her family could take a “family memory trip” to New Zealand. Given that her interferon had stopped working, and Gleevec was a Hail Mary pass, she had wanted to preserve these memories.

Her platelets—high from having to end interferon treatment for three months before she began the Gleevec trial—required that Orem undergo pheresis before the trip. She was prepared to undergo it again just before the plane ride if need be.

“I was so miserable that I got two seats so I’d have one to lay down on,” Orem said.

In New Zealand, Orem submitted two blood tests so that she could adjust medication to keep her platelets under control. By the end of the trip, she recalls her flu-like symptoms virtually disappearing because she was further out from her interferon treatments.

Afterward, she began the phase I Gleevec trial.

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