Riveting survival stories from the early clinical trials of Gleevec

(Left to right) Judy Orem, 73, of Lake Oswego, Oregon, Doug Jenson, 83, of Canby, Oregon, and Dori Mortensen, 79, of Bend, Oregon, inside Multnomah Pavilion at Oregon Health & Science University in Portland, Oregon on Thursday April 20, 2017.
(Left to right) Judy Orem, Doug Jenson and Dori Mortensen were diagnosed with chronic myeloid leukemia in the 1990s, when few survived more than five years. They were among the earliest participants in clinical trials of Gleevec. (Stat News/Meg Roussos)

Medicine had never seen anything like it before, Brian Druker, M.D., recalled. “These are people who’d been told to get their affairs in order. And now their blood counts are normal,” the director of the OHSU Knight Cancer Institute told Stat News reporter Bob Tedeschi.

“But here’s the problem: When can you celebrate? I felt a little bit like walking on eggshells, because it’s like, OK, is this going to be a flash in the pan, or is this going to last? And there’s only one way to find out: wait and see.”

Druker didn’t know it yet, but the experimental compound STI571, now known as Gleevec, would transform the outlook for people diagnosed with chronic myeloid leukemia. A disease with a three- to five-year life expectancy became, for most patients, a chronic, long-term condition managed with a daily pill.

Tedeschi collected a riveting oral history of the early clinical trials of Gleevec starting in 1998, and how Druker and three of his longest-surviving patients remember the drug that changed their lives.

When Doralee Mortensen was diagnosed with CML in 1991, she looked up survival data that showed she had an 80 percent chance of dying in two years. After 70 bone marrow biopsies, she had dreams of being cured but couldn’t allow herself to believe them:

When they’re drilling through the bone, all you hear is the sound. You don’t feel anything. But when they draw it out, it’s like a dentist hitting a nerve.

It was November 2002 when they called me. They left a voicemail, that I was down to 1 percent abnormal cells. That I would survive. It was – it was – [crying]. Sorry. So I called everybody that I knew. By then I had a man in my life — we’ve since married. We celebrated over lunch.

I felt — I can say this — everybody I’d known had died. All the clinics I’d been to, all the waiting rooms I’d been in, all those people had died. So many had children, young children. One fellow who’d just been married and had a baby and he didn’t survive. I was in a meditation group for terminal patients and I’m the only one in that room of 10 people that’s still alive. And some of it is survivor guilt. Why me?

Obviously, I’m very thankful and feeling very lucky, but it was just so many people had died.

You just kind of think, “I’ve got to live for them.”

You can read the full the oral history online at Stat News. It includes recollections from Doug Jensen (now age 83; diagnosed in 1997) and Judy Orem (now age 73; diagnosed in December 1995).