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.
Deborah Doroshow, MD, PhD, Assistant professor of medicine, Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai
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.
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.
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.
“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.
A video and podcast recording of the conversation with Doroshow and Orem appear above.
Transcript
Judy Orem: Well, at this point, I’m a 78-year-old wife, mother, grandmother. I was 51 when I was diagnosed with CML.
JO: Well, I was married and had a daughter and a son—no grandchildren yet. I have a master’s in education and I was working in the school district as a glorified secretary for the visually impaired program and enjoying that.
JO: We liked to travel. We’d go to Mexico for a couple weeks every year. We’d go to central Oregon. We had moved to California, so we would come back up to Portland, where we live now, because our families were both here in Portland.
JO: In the Bay Area, out in the Walnut Creek area.
JO: Nobody told me that. My grandmother died of CML in 1979. My mother was diagnosed with CLL in 1991. In 1995, I was going in for a physical, and in the back of my mind, I said, “I ought be thinking about and wondering whether I perhaps would have any of this.”
I had asked the doctor to do a blood test, and she said, “Oh no, you’re not scheduled for a blood test,” and I said, “Yes, I want a blood test done.” So I got a call later that day saying, “Judy, I made an appointment for you for tomorrow with a specialist.” And I said, “I’m sorry, but I’m going to be busy tomorrow. I can’t.” She said, “No, nothing is more important than this.”
What had happened was that my blood test came showing I had 5% blasts in my drawn blood, peripheral blood, and she thought I was in blast crisis or accelerating into that with CML.
She called this other doctor up and said, “I want this patient tested tomorrow—bone marrow biopsy tomorrow.”
I went in the next day with my husband and had the test done. And the doctor said to me, “This is not normally what I do. I normally talk to you, wait a couple weeks.” But she says, “Your doctor was very insistent.”
She did the biopsy and said, “Yes, you have CML, but you’re in chronic phase. You have those blasts out there. Don’t know why you have so many out there, but in your own marrow, you’re still at only 5%. So you’re in the chronic phase.”
JO: That you had about a three- to five-year life expectancy.
When my doctor told me that it was CML, but I had to have the proof from the marrow—I called my husband, I called my daughter, and I called our son. Our son said, “Oh, mom, something will come along. You’ll be just fine.”
Well, that was not a very nice thing to say. I mean, yes, he was encouraging me, but I wanted a little more sympathy. I wanted a little more—maybe I’m not going to be. I got that, of course, from my daughter, and my husband said, “No, no, no, you can’t have this. I’m the one that should go first.” And so that was their reaction to all of this.
JO: Yes. And how did I feel? I had tingles all the way up the arms. I remember another couple days later going to a women’s retreat planning meeting, and on the way over, I started crying. I got myself under control and went to the meeting and then sat there and cried again. It’s very emotional. It’s really sometimes a really hard experience. It’s kind of the fight or flight, I think.
JO: A little bit. I knew she had the high blood counts. I knew that she and my grandfather went to visit a missionary friend in China, and they were on a boat. It was a horrible experience. I made an appointment for her to see her doctor when she got back.
He had put her on chemo. That was a horrible experience for her. I mean, it was different then. Then finally she decided to go off of it, and they told her she would have three days to live, that her counts would go up so high that she’d just have an aneurysm.
So yes, that was the experience.
JO: Well, she had to stay at the hospital. She was in a hospital bed. She kind of hallucinated. Somebody brought her flowers and she thought they were horrible things—and get them out of there, and smells, and she could hear people talking and laughing about not really knowing what was going on.
She was just kind of in a surreal world, but everything affected her in a bad way.
JO: She did.
JO: 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.
JO: Drugs had changed at that time. And now, instead of the chemo, they were doing interferon.
JO: Well, what I did was I called a friend who is a medical technologist. I said, “Would you lead me through what they do for a bone marrow biopsy?” Because nobody told me the process. I wanted to know.
JO: Yes. They just said, “You’re going to have one.” So she explained the whole process of numbing the area, then going in through the bone, about the draw. The draw is about five to six seconds. That’s the painful part. You just take deep breaths for that and then it’s over. She took the mystique away from it for me.
JO: I think that probably happens a bit, that the doctors forget that the patients don’t know what’s going on. And my friend was very much in my corner all the way along, explaining all the blood test results, why some cells came out looking kind of teardrop-shaped—why this, why that, why something was high, something was low. She explained all this to me, and so that was really helpful too.
JO: The Leukemia & Lymphoma Society had booklets about it. But I went to a general cancer support group for a while, and was in a group. I was the only one with CML. The others had a variety of different cancers.
And one day, I walked out of there and I said, “I have to leave.” And I never went back, because I couldn’t take everybody else’s diseases. The whole thing was too much for me when I was dealing with my own. I had, by that time, found out that the Leukemia & Lymphoma Society had a support group just for leukemia and lymphoma people.
I went to that, and met other people with the same disease, and that was very helpful, because that’s where I got, really, a lot more information.
JO: Yes, actually. She was very, very good. So was my primary care physician, actually. I gave her a certificate for a pound of See’s chocolate when she rushed everything through for me.
JO: And so in both cases, both doctors were very good.
JO: Boy, that was in 1995. That was a long time ago. She was actually very good. She’d been a medical technologist herself.
JO: And she made her own slides, did her own stuff, because she knew she did the better job than anybody else could do. She had that attitude. She was very, very good. She and I talked about the disease.
She gave me information herself, and she actually was very encouraging when she gave me the prescription for the interferon. To begin with, it was the first part of December ‘95. We were coming up to Portland for Christmas and she said, “You can wait to take this drug until after Christmas, because it might make you feel a little uncomfortable.”
Of course, I wasn’t quite sure about that. When I came up, I saw my mother’s oncologist, who said, “Yes, your doctor’s right. You’re fine. You don’t have to start right away.” But I wanted a second opinion, and I got that.
Anyway, the doctor said to me, “I’m going to start you out on 3 million units a day, and now you go three days, and then you’ll increase it to 6 million units, and then we’ll move it up to nine.” She says, “That way, you’ll be able to tolerate it.”
She was very positive on my being able to do this. Well, I got to the end of the sixth day, and I called and I didn’t get a hold of her. But I called and left a message, and I said, “I don’t think I’m quite ready to go to the 9 million yet. Can I wait another day?” Well, I didn’t get a result back, but I waited another day and then went to nine.
I had a friend from my support group who had a different doctor who said, “This is going to be really rough for you. It’ll be terrible.” It was very negative about the results. I mean, how they’d feel on it. And she could never make it past about 4 million units.
JO: 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.
JO: I don’t think I had any decision to make. I was simply told I was going to do that.
What I did do was to say that I wanted to give it to myself. She said I could. I had two neighbors. One was a young gal who was a nurse, and the other neighbor, who was a nurse too—and the younger one came over and explained to me how to fill the needle, how to tap it off so that I get air bubbles out of it, and she watched while I injected myself.
Both of them said to me, “If you need any help, we’ll come over and do it.” What I needed was somebody to show me how to do it. I was very fortunate.
JO: I did.
JO: Yes.
JO: I don’t think they knew a lot then. I think the most, was that it would keep it under control.
JO: Well, it was that or nothing. But my husband graduated from Stanford. We went over to Stanford Medical and talked to them about having a bone marrow transplant as an option.
And sat there and listened to him talk about the fact of what I would go through for the year. It didn’t sound very pleasant, and the fact that by the end of the year, I probably had about a 50% chance of surviving.
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.” And so, I chose not to do anything other than the interferon.
JO: Well, that was just to see at that Christmastime, whether I really was right in delaying the treatmaent.
JO: That I’d gone? No, because we were up in Portland.
JO: I stayed on that dose from, actually, January of ‘96 until, well—June of ‘98 they did another biopsy and said that things were progressing and 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.
JO: I called Fred Hutch at that point, Hutchinson, and asked them about a bone marrow transplant. They said having been on the interferon for two and a half years, I had a 5% chance of surviving.
JO: Yes.
JO: It was like, “Oh.” 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. But it was… well, we’ll take each day as it comes.
JO: Yes. They simply called and told me.
JO: I don’t remember that.
JO: It was, 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, and my good friend who is the medical technologist had read about it, or heard it on the radio. I can’t remember which.
She called me and she called Dr. Druker’s office and said, “I think the two of you need to get together.” And so he actually called me and asked me if I was interested in possibly being in a phase I trial. I said yes. I was very interested. Actually, this was prior to June.
It was back in ‘96 that he was starting to do this. And he said he’d put me on. So this was… I have to go. I’d forgotten—I have to go way back. He’d put me on a list. And as it got closer, he’d let me know. Well, they didn’t start the human trials until ‘98–’98 is when I found out that the interferon wasn’t working. In the background, I had Dr. Druker’s drug, which they were just beginning to do. So I really had an overlap, already, of another possibility.
JO: Actually, for almost two years.
JO: No.
JO: That phase I trial was to find toxicity level.
Phase II was to see if it showed the signs of working, and phase III was a continuation. Normally, trials were a placebo for phase I and then on. That was all I knew about. But I had gotten a couple of notes from him saying how they were progressing.
I knew that. When ‘98 came along and this other was failing, I talked to my doctor and she said, “Well, are you sure you want to go into a phase I trial? I’d really rather you went to phase II, because phase I is just for seeing if it works.” Well, it turns out that for this trial, Dr. Druker was only testing CML patients—and we didn’t have placebos. It was just, the drug was there. And my husband actually said, “Judy, you’re going to do this now. It’s here, you’re on the list, you’re going into the phase I.”
JO: Well, it was enough to convince me too. I wanted to do that. So we made arrangements to come and visit with Dr. Druker.
After sitting there with him, and 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.” 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.”
JO: They were all in favor of going ahead with it.
JO: I didn’t know anything about the drug except…
JO: Except that they had started out with the 25, and the 50, and they were working their way up.
I knew that. When I did get on, I was at 250 milligrams. Thinking about what we did between June and November, we decided we would take a family memory trip.
I wanted the family all to think of the good times when we’d done something together. We’d always talked about going to New Zealand someday when we retired. We took our two kids, who were adults. We took them to New Zealand. Well, I was so miserable that I got two seats so I’d have one to lay down on. We went. I had seen Dr. Druker. I saw my own doctor. Dr. Druker provided me with a prescription for a drug because of my platelets—to keep that under control.
JO: No.
JO: But between the two of them, my platelets were high, and we had to go off of the interferon. I had to be off it for three months.
I was given this anagrelide, and I was told to get a couple of tests in New Zealand to see where I was to determine whether to raise or lower the drug I was taking. Both doctors, because the platelets were high, when we went back down to California, my doctor arranged for me to have my platelets spun off.
I had pheresis, because they were so high, and it was arranged that the next morning before we got on the plane, I would have pheresis again if I needed it.
They did another test. See, I’ve been really fortunate. I had doctors who really worked hard for me. And I didn’t need it then. I went to New Zealand. I had two blood tests done there.
JO: There was a clinic, and I just walked into the clinic and said, “I have this prescription for a blood test.” And it said to the doctor, “Please give her the information that she needs afterwards.” And so the first one in Rotorua said, “Oh, you look like you’re a Kiwi, so there’s no charge on this.”
And he says, “I gathered from what your doctor says, that you know what to do with the results.” And so he told me. Then we were down in Christchurch and I went to another—No, it was Dunedin—and I went to another clinic down there, and it was a Saturday, and it was almost noon. Well, the lab was in another [building] up the street. The guy came down and picked me up, took me back to the lab. A woman waited there at the lab, even though they had been closed, and they did the test and gave me the results. It was fabulous. I mean, they were super.
JO: I began feeling better every day. I was pretty good by the time we came home.
JO: Yes. I still had the interferon in my system.
JO: It’s like you have the flu, not the sick to your stomach flu, but the other flu, and just—weak, tired, yucky.
JO: Two weeks.
JO: We had to be in Portland for the first part of January. I started the tests on Jan. 9, I think it was. Our daughter was in Salem going to the university there, and she found us a place down by the river, and we could see out—and it was really nice. We had to be here for three months.
JO: Yes. But his company had put him on a project here in Portland.
JO: I had been fired from my job. I had been let go because I had cancer and they told me I should stay home and take care of myself. It happens.
JO: It was awful. I had a note in the spring saying, “We’ll see you back in September.” I walked into the school in September, and they said, “You’re not supposed to be here. You’re not with us anymore. And you better call the district office.”
JO: I did about a year and a half afterwards.
JO: After I had been diagnosed.
JO: Before I told them.
JO: I think probably because I wasn’t feeling real well. I mean, I was functioning, and the job I had to do was fine. But anyway—so that was a horrible experience.
JO: I had a lawyer, and that was only sort of so good. They did cover my 18 months of COBRA.
JO: I did get another job, and I was a receptionist then for Kaiser, actually. And I walked to work. I’d walk to the high school, too. This was just beyond that. And instead of working 25 hours a week, which I had been doing, which was all that was for that job, I was working up to 40 hours a week. Well, if I could handle 40, I should have been able to handle the 25.
JO: Well, they were also my healthcare provider.
JO: But they didn’t have a problem with it.
JO: Right. And so, I had to come up every day to OHSU, and there was a group of us at that point. I was number nine from OHSU on this study, and met some really neat people, and am still in contact with one of the gals. She’s stayed at my home and I stayed at her home, and we get together every summer. When I go over toward where she lives in central Oregon, we have a meal together.
JO: We met because we were sitting there together waiting for our appointments, or our blood tests.
JO: Yes. I met a lot of them that way. Then a group of us decided that, before people left in the summer—we ended up staying longer than the three months. My husband’s mother wasn’t doing very well, and so we extended our stay.
I met a lot of different people, and by the time the summer came around, we had a gathering at the apartment complex where we were living.
The Leukemia & Lymphoma Society came over, and we said, “We’d like to have a support group, but we don’t want to belong to the one that you already have organized, because we’re all doing extremely well on this drug, and we think we’re just too positive, too good, and healthy, and it might not be good for the other people in the other support group.”
So they said, “Sure, we’ll help to start one.” 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. 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.
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.
And then whatever the main subject was, I’d write it up. We interviewed people and they talked about what they were doing. We never used more than the first name, and the Leukemia & Lymphoma Society printed these all up. Then a group of us would sit up there at OHSU and stuff envelopes and put stamps and lick them shut and mailed them out, too.
JO: I do. We did about—I’m trying to think. We did it for a couple of years. We probably have 21 or so of those.
One of the gals put together stories from all of us and presented Dr. Druker with a thank you book for that. It was a wonderful experience to have this trial be incorporating all of us, the whole person. It wasn’t just getting—Oh, and Gleevec is a pill, so no more shots. That was really nice. But you need to take it with food, otherwise you couldn’t keep it down.
JO: We said that the Gleevec was user-friendly. All of us had been on interferon. So the Gleevec was just, to us, nothing. Just the only thing we seemed to do—the [interferon] had destroyed our appetite, and we would take the Gleevec and we had this little thing. “Oh, when you take the Gleevec, you take a little Hershey kisses with it. It all sits better.”
Well, some people gained a fair amount of weight on their little Hershey kisses. They didn’t stop at one. No, our appetites increased. We felt really good.
JO: They did with the first blood test. It showed that it had dropped down. I think I’ve had 23, 25 bone marrow biopsies. We had to have them fairly regularly. I got a cytogenetic response, which means there was actually a decrease in the Philadelphia chromosome.
Up to that point, my first oncologist said—I’d said to her one time, “Well, what percentage do I have of the…” She said, “Well, you have it. You either have it, or you don’t have it.” They have learned so much in the time, that there was actually a percentage that you could have of the CML.
And then from there, they learned all kinds of other things that they had never known before that were going on.
JO: Well, the once a month meetings with Dr. Druker. He kept us all informed what was going on, the whole process.
JO: This once-a-month meeting that we had, people would try to plan. Those who were there for three months, of course, were always there. Those who had to come back and be checked every three months, tried to arrange that they were always there for his meeting. We would have probably 30 people or more sitting around a table while he was talking. He’d eat his lunch while we were meeting.
JO: We met in a conference room up at OHSU.
JO: Yes. Early CML support groups were not really a support group. They were people chatting with each other, and you didn’t get anything. But it began to grow, and some of these people were on, and they let the cat out of the bag and said what was going on. Which was good, except that you can only have a certain number of people on a trial. It was done here. It was done at the Jonsson Cancer Center at UCLA, and it was done at MD Anderson.
We had three centers that were doing it. They all did it in their own way. OHSU with Dr. Druker was the only one who had the support groups that would sit around and visit and hear about it from him.
JO: It was like, “Wow.” And the three to five years was kind of like, “Oh, we don’t have, necessarily, an end anymore.” What it was is that we were told we could die. We could get any other disease. You have to remember—you’re still prone to any different thing, but we’re probably not going to die of the CML.
JO: Oh, well, they were there all the way along, so they knew what was going on.
JO: No, I don’t think so. Don’t remember that. I’m still on it.
JO: Well, 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. 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.”
I think that that’s important, is anybody who’s diagnosed with it is to be looking—do your research. A lot of times you can’t, personally, so you get somebody you can trust, somebody you know, to get the information for you—to have somebody to go with you to the doctor because you don’t always hear. You hear what you want to hear or don’t want to hear.
I had the great experience of going out and riding with my granddaughter as she learned to drive. We started in a little neighborhood. We branched a little bit farther. We did this, we did that. Our final thing was she drove me to the beach, which was 80-some miles from Portland, and then back again. And that was her graduation thing. And we did trips partway. We got halfway there once, and then back, and we’d plan places to stop and visit along the way. She knew where every Taco Bell place was. We always had to stop.
JO: And it was fun. That was a wonderful, wonderful experience. COVID has been bad, but it gave us the opportunity just to do this.
JO: I don’t think it did at all. When the shots came along, I, of course, got them and felt much relieved. When the boosters came along, it was decided that I should not have the booster. I should have a full dose again. I am now scheduled tomorrow for the fourth dose, which will just be a booster.
JO: No. I had to go back to my own care provider, and we had phone visits, but that was all.
JO: I just saw him this morning, but I don’t see him as a doctor.
JO: Well, he’s wonderful. 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… 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. I came up here to OHSU to do this interview because the lighting, I figured, they would set up and would be better than what I might have at home.
JO: It did.
JO: I think perhaps one of the most important things is being positive. Positive positive, not in a positive and a negative way—but I do think that people’s attitude in their approach to their cancer and their treatment is really important.
I know that my daughter had a blood clot and she had to use the medicine for that, and all she could think of was rat poison. So she had somebody explain to her what it was really doing, and look at it in a positive way instead. And she said it was so much easier for her to do it when she had a positive attitude about what she was doing, than a negative one.
I think that that’s important, is anybody who’s diagnosed with it is to be looking—do your research. A lot of times you can’t, personally, so you get somebody you can trust, somebody you know, to get the information for you—to have somebody to go with you to the doctor because you don’t always hear. You hear what you want to hear or don’t want to hear, but you have somebody else with you. And write your questions down ahead of 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.
JO: No, no. This was back when I was first diagnosed, and it was this first support group. They had this box, and it was just somebody who said they’d be willing to talk to somebody else.
JO: Not in that one, but I was for the Leukemia & Lymphoma Society, and I talked to people all the way across the country who were just newly diagnosed and who were going on the drugs.
JO: That was really kind of neat. I’ve had one person that has called me every year to say, “Hi, I’m here. You there? Yes?” I didn’t hear from him this year, but it could be he lost my phone number or something. I need to look up his to call him. 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.
