Spotlight: Jill Kanzenbach, an "Exceptional Responder"

Jill Kanzenbach shares her miraculous story of how she recovered from aggressive brain cancer


Jill Kanzenbach, 32, is convinced that her recovery from aggressive brain cancer is "a miracle."


But her UW Carbone Cancer Center physicians have another name for Kanzenbach: They call her an "exceptional responder."


Today, the genetics of her cancer are being analyzed by a new precision-medicine study at the National Cancer Institute. The hope is that by pinpointing why an experimental medicine combination worked for her, and for almost no one else, they can more reliably recreate Kanzenbach's "miracle" for future patients.


"We are still trying to understand why she did so well," says her neurosurgeon, Dr. John Kuo, head of the UW Brain Tumor Program. "I joke with her that she's just lucky because we share the same initials – J.K."


Kanzenbach's journey with cancer began in 2008 when she was 26 years old and living in Lincoln, Nebraska. She had been having terrible headaches, nausea and dizziness.


"I thought I had a really bad sinus infection," says Kanzenbach, a native of Watertown, Wis., who is married to Matthew Kanzenbach. "But after I passed out and was taken to the hospital in the ambulance, we found out it was much more."


Indeed, "it" was a tumor the size of a tangerine in her left frontal lobe. She had emergency surgery on a Sunday, and on the following Tuesday, she got even worse news. The tumor was Glioblastoma multiforme (GBM) and the prognosis was grim. Most people live less than two years after diagnosis.


A second surgery followed about two weeks later as the cancer quickly regrew. And Kanzenbach's Nebraska physician told her she'd have the best treatment if she went to one of three cancer centers. Fortunately, one of them was the UW Carbone Cancer Center, near the Watertown, Wis., home of her parents Myron and Birdie Duin.


"That's why we moved back to Wisconsin, so I could have my treatment here," she says. She began with radiation and chemotherapy with oncologist Dr. Ian Robins.


She also did a clinical trial of an anti-tumor compound called motexafin gadolinium. She said that some of the side effects of the forest green medication were rather interesting.


"They warned me that I might turn green from it, and I did," she said. "My spit turned green and the whites of my eyes turned green." More troubling, the drug made her blood pressure and heart rate shoot up to unsafe levels, so her physicians took her off the trial. Her next step was more neurosurgery with Dr. Kuo, to again remove as much of the growing tumor as possible.


Despite her bad reaction to the first clinical trial, Kanzenbach was willing to try another experimental drug combination, so Dr. Robins lobbied to get her on a trial being run by the NCI to test a combination of drugs called cediranib and cilengitide, which were aimed at cutting off the blood supply to the brain tumors. She took a pill every day and had an infusion twice a week.


The combination did not work for 43 of the 45 people in the trial and the experiment ended. Luckily for her, Kanzenbach was one of the two people who fully responded to the drug combination, which shrank her tumors and even reduced the scar tissue.


"In February of 2013, Dr. Robins declared me in complete remission," says Kanzenbach, who still returns to UW Carbone every four months for an MRI to image her brain.


Meanwhile, the NCI's Exceptional Responders Initiative is studying Kanzenbach and others like her, who had dramatic responses to therapies that did not help others. The hope is that there's a specific gene that will predict when the combination therapy will work, so that others can experience the recovery that she did.


For her part, Kanzenbach is convinced that her exceptional response to the clinical trial was "part of God's plan for me."


Now that she's no longer engaged in daily treatment, she has time to volunteer at her church, Zion Lutheran in Columbus, Wis. She helps write the church bulletin and volunteers as a teacher's aide in the combined 5th/6th grade class taught by her husband, Matthew.


"I know my story is a miracle, and that's why I want to tell it, to encourage others to take part in clinical trials," says Kanzenbach, who has told her story at churches in Wisconsin, Nebraska, Minnesota and Florida.