Leukemia Survivor Credits Clinical Trial for Milestone Remission

Anne Holzbeierlein likes a challenge. She plays tennis, hikes, zip lines and enjoys whitewater rafting with friends and family.

In her 11 years as vice president of development at the University of Central Oklahoma and president of the UCO Foundation, in Edmond, she has taken on new challenges with the same fervor. So when an easy stroll across her home campus suddenly became exhausting in spring 2013, Anne visited the university health center for a blood test.

“I’ve always been very active and have rarely even needed to take a pill for anything. I knew I wasn’t myself,” she says.

Late that same evening, a physician called and advised her to go to the emergency department. There, she was diagnosed with acute myeloid leukemia (AML) at the age of 68.

Physicians at a local Oklahoma hospital began initial treatment for the leukemia, but Anne’s case was anything but typical. Molecular analysis of her blood showed her cancer to be the most aggressive form of leukemia. The next challenge: Anne would need a bone marrow transplant, but a full match could not be found among family members or on the national registry.

Anne’s son Jeffrey Holzbeierlein, MD, a urologic oncologist with The University of Kansas Cancer Center, encouraged her to meet with physicians at the cancer center to discuss advanced treatment options.

“She was at extremely high risk for relapse, with zero chance of her leukemia being cured by chemotherapy alone,” says Dr. Holzbeierlein. “With no donor match, our options were pretty limited. We realized the outcome may not be good, but this was the place to explore the options.”

Joseph McGuirk, DO, medical director of the cancer center’s blood and marrow transplant (BMT) program, says Anne’s timely referral was critical to her favorable outcome. Dr. McGuirk, who advised the Holzbeierleins along the way, advises that patients of all ages who are eligible for transplant need to proceed before their disease becomes unmanageable. Through Dr. McGuirk, who is also director of the Division of Hematologic Malignancies and Cellular Therapeutics, the Holzbeierleins learned about a clinical trial that had the potential to make a difference.

Ideal candidate for BMT

The phase 3 clinical trial, open to patients age 65 or older with hematologic (blood) cancers, was a perfect fit. Other than her leukemia, Anne was in good health, making her an ideal candidate for a BMT procedure.

“You have to be in pretty good shape to go through this type of treatment and recovery,” Dr. Holzbeierlein says.

Participants in the clinical trial are randomly selected to receive 1 of 2 types of transplant: one using umbilical cord blood from an unrelated donor or the other using haploidentical bone marrow (a genetic half match) from a relative.

Anne was selected to receive the bone marrow transplant. As her son, Dr. Holzbeierlein was a half match. Further testing verified his blood type, health and other variables were compatible for the transplant procedure.

Because Dr. Holzbeierlein worked on-site, he was able to undergo surgery to harvest his bone marrow one morning and head back to work the next day.

Anne’s surgery was followed by a lengthy recovery. Doctors cautioned her she would need to remain in Kansas City for 100 days – away from home, work and a deeply rooted support system.

“It was difficult,” she says. “The idea of being away from home and out of my element for such a long time was overwhelming.”

After a few weeks in the hospital, Anne stayed with her son and his wife. Having a physician around was motivating. Dr. Holzbeierlein encouraged his mother to walk, ride the exercise bike and push her own limits during the first weeks of recovery when her energy and resolve were at their lowest.

But it was her resolve that helped her pull ahead. During treatment, she managed to work 10-20 hours each week, making calls and sending emails from her hospital bed in the first few days.

“I kept busy,” she says. “I had my phone, my laptop and even a printer. For me, this made a huge difference, to be able to do the things that were part of my daily life. It was a great distraction.”

Two years leukemia-free

In July, Anne celebrates an important milestone – 2 years in remission from her AML. Patient outcomes improve considerably at the 2-year mark. In fact, 90% of patients who relapse do so within the first 6 to 12 months. Complications beyond 2 years are rare.

It is a milestone she credits to the power of research.

“I’ve always valued research and the idea of being part of something that can help people down the road,” she says.

In Anne’s case, research added a compelling chapter to her story.

“Just 10 years ago, she would have been given zero chance of survival,” points out Dr. McGuirk. “Now, researchers are discovering how to use these alternative donors to truly change the course of these aggressive cancers. To see her so vibrant and healthy today makes you realize the magnitude of these discoveries.”

This individual participated in a clinical trial of an investigational treatment. Clinical trials are different from standard medical care. As with all research studies, clinical trial participant outcomes vary. Before participating in a clinical trial, it is important to discuss the risks and benefits with your healthcare provider.