Guest editor’s note:
This month, the Cancer History Project presents the first of several oral histories which I conducted with individuals who have experienced cancer in a preliminary attempt to begin to capture some of those experiences.
Although sources regarding the experiences of scientists and clinicians are often readily available, sources documenting the patient experience—a topic which historians of medicine like myself are deeply committed to elucidating—tend to be more difficult to find and are less frequently saved by archivists.
While each person has a unique story to tell, common areas we are investigating include the process of learning about a diagnosis, communication with treating clinicians, decision-making, treatment and its side effects, the impact of cancer on family and friends, and lasting effects of both the disease and its treatment.
Our first oral history is with Judy Orem, a participant on the phase I clinical trial of STI-571, or Gleevec. While the story of Gleevec’s discovery and clinical testing is well known, Judy’s narrative provides new perspective into the experience of being one of the first individuals to participate in a clinical trial of one of the earliest targeted therapies in hematology and oncology.
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.
“We said that the Gleevec was user-friendly. All of us had been on interferon. So the Gleevec was just, to us, nothing,” she said.
Orem’s prognosis improved with the first blood test while on the new drug.
“I got a cytogenetic response, which means there was actually a decrease in the Philadelphia chromosome,” Orem said.
Given that patients on Gleevec were doing well, participants in the trial asked the Leukemia & Lymphoma Society whether they could start their own support group—separate from patients with CML who weren’t on the same drug at the time.
One of the positive things for me when I was first diagnosed, was I was given a buddy box to look through and pick out a name of somebody who had CML. I called that person, and what she had told me was basically, ‘I’m five years out.’ I don’t remember anything else, but that she was alive still at five years. So that was a real positive thing.
“I kind of spearheaded that and ran that one. We did a newsletter. We met once a month. Dr. Druker would come to the meeting,” she said. “He would explain to us why he wanted the counts to drop down, and then when getting started on the drug, he explained the whole process, what they were looking for, what they hoped to see.
The first and final copies of the newsletter for the Leukemia & Lymphoma Society support group of STI-571, or Gleevec participants, appears here.
“He had people come and show us sample slides of what our bone marrow looked like, which cells were bad ones, which were the good cells. We had people do mind meditation.
“We had somebody come and talk about pharmacology and what drugs should go with and what drugs we shouldn’t take, talking about herbs and which ones were bad and what to look for on them. It was a real educational time, and he did that.”
On the day of this interview with Doroshow, 24 years later, Orem stopped by to say hello to Druker at OHSU.
“I just really enjoy him, and he seems to think that I’m OK. I was the first one of his patients to get this cytogenetic response, and one of the early patients,” she said. “All of his patients are special to him, and he remembers everybody, and he remembers about their family and what’s going on. Just a unique individual. Anytime I get a chance, I say hello.”
Today, far past the expected three- to five-year survival Orem faced, before Gleevec became the standard of care treatment for CML, Orem likes to spend time with her family.
“I have welcomed two grandchildren. Our grandson just graduated high school in March, got through early. As I was telling somebody this morning, COVID made it such that people were really pretty confined places,” she said. “Our granddaughter had just gotten her permit. I attend church, but church was online. So I said, ‘Sunday mornings are good mornings, not very many people out driving. Let’s go driving.’”
Orem’s time managing her CML with interferon had not been easy. She was fired from her job as a secretary at a school, relocated to Portland for treatment, and had painful side effects.
Still, she kept a positive outlook—especially when speaking with members of CML support groups.
“A lot of us kept in contact. It was just–I think what I tried to get to them, is I’m still here. I think that was an important thing to know,” she said.
