Andrew Schorr credits the Internet with helping him beat the odds against leukemia. Here, his story—and how the Web can be your go-to resource.
Andrew Schorr had reported on medical advances for local TV news stations and produced educational videos on health conditions. So when he was diagnosed with chronic lymphocytic leukemia (CLL) in 1996, Andrew was determined to use his skills to save his life. What he didn’t anticipate: A new technology called the Internet would be instrumental in finding an effective treatment.
Andrew’s doctor had told him that CLL—a blood cancer that starts in the bone marrow—typically progresses slowly. But the disease was considered incurable and would probably shorten his life. Andrew and his wife, Esther, had two young children, ages 6 and 2, at the time. “I knew a school superintendent who died from leukemia, so I thought, I’m gonna die, just like him,” recalls Andrew. “I didn’t know what I would say to my kids.”
A computer-savvy support group
Andrew and Esther were searching for a more hopeful prognosis when a tech-savvy friend suggested Andrew participate in a “news group”—an online community where patients chat about their condition via email and web postings. “Online news groups were like the Twilight Zone to us,” says Andrew. He found a CLL news group at the Association of Cancer Online Resources (ACOR.org), but he joined with some trepidation.
“Identifying myself as a leukemia patient was terrifying,” he recalls. He began chatting with “GrannyBarb,” a patient leader who turned out to be Barbara Lackritz, a speech therapist from St. Louis. A CLL survivor at the time, Barbara gave Andrew what he needed: reassurance and advice about CLL specialists. Andrew asked if he could call her, and she said yes. “The first thing she said was, ‘Chill out. Yes, it’s leukemia, but many of us are living for a long time, and there’s better care coming,’ ” recalls Andrew.
Barbara also advised Andrew to connect with a clinical research oncologist specializing in CLL to find out about the latest treatments, as well as ones still in development. As far as she knew, there wasn’t a specialist near Seattle, where Andrew lived. He asked other members of the group for recommendations, and the name that kept popping up was Michael Keating, MD, a leukemia specialist who was running clinical trials at the University of Texas MD Anderson Cancer Center in Houston.
Around the same time, Andrew saw his local oncologist. The doctor told him he could take a chemo drug that would halt the disease’s progression for four years. Then he could switch to another medication that could keep the cancer at bay for two more years. After that, Andrew would be out of options.
A more hopeful second opinion
Andrew and Esther didn’t like those odds, so they asked the oncologist about Dr. Keating. He confirmed that Dr. Keating was an expert; he’d seen him give presentations on CLL at major oncology meetings. So, with his oncologist’s approval, Andrew made an appointment for a second opinion.
Andrew and Esther flew to Houston for the consultation. Tests revealed that Andrew’s leukemia wasn’t aggressive, and he didn’t need immediate treatment. Dr. Keating recommended that Andrew wait until his symptoms worsened significantly, since there was a 15% chance that the CLL wouldn’t progress any further. If Andrew had received immediate treatment, the cancer could have become drug resistant, reducing the odds of long-term remission. Dr. Keating told Andrew that when it was clear that the disease was progressing, he’d enter him in a clinical trial of the most promising CLL drug regimen.
Andrew and Esther were thrilled to get such hopeful news, but Esther had a pressing question for Dr. Keating. “We’ve always wanted a third child, but we’re hesitant to try because we don’t know how long my husband will live,” Esther said. The doctor gave her a big hug and said, “Go have your baby.”
A second chance
Four years—and a healthy baby boy—later, Andrew was enrolled in a clinical trial at MD Anderson. “I had six months of treatment, and I’ve never had any since,” he says. In fact, a test revealed that he doesn’t have any signs of CLL in his blood and bone marrow. “And that baby? He’s a lacrosse and football player who’s about to start his freshman year in high school.”
These days, Andrew is teaching other patients how to use the Internet for knowledge and support. His book, The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing a Medical Crisis, was published in 2011 and is available at websavvypatient.com and via Amazon.com.