Persistence Paves Way for GIST Recovery

By Renee Twombly

Ginger Sawyer is a can-do kind of person who is as comfortable navigating the halls of political power in Louisiana as she is finding her way through a forest, hunting wild turkey or deer.

But she never expected to be in charge of her own survival from cancer, or that the road she would travel to M. D. Anderson could provide insights to help other patients like her.

In 2004, Sawyer was diagnosed with gastrointestinal stromal tumor (GIST), an extremely rare cancer of the digestive tract, affecting fewer than 6,000 Americans a year. Today she is cancer-free, but the journey was far from simple.

Surgery reveals GIST

Sawyer, a resident of Baton Rouge, had long been healthy and energetic. She is a self-described “people person,” a quality necessary for her job at the Louisiana Association of Business and Industry, where she finds and backs pro-business electoral candidates for the state legislature.

Her cancer story began on Christmas Day, 2003, when she sat down to a holiday dinner at her parents’ home in Tyler, Texas. Stabbing pains wracked her abdomen. Hours later emergency room physicians saw a mass on a CT scan and told her to see her gynecologist in Baton Rouge.

Sawyer was concerned, but not worried. She thought she might have another benign uterine fibroid so she made an appointment to see her gynecologist on Jan. 6 and then took off on a hunting expedition.

By New Year’s Day, however, she had developed a fever of 103, and she returned immediately to Baton Rouge where her primary care physician promptly put her in the hospital.

Another CT scan revealed the mass had ruptured and filled her abdomen with enough fluid to fill a quart-sized jar. She stayed in the hospital until the infection could clear.

More than a month later, the mass was removed, and her surgeon told her that she had GIST.

Desperately seeking Gleevec

Worried about the cancer returning, Sawyer followed up with a local oncologist. He mentioned a drug that had been approved for GIST treatment.

That’s when Sawyer started doing her homework, enlisting the help of her son, a young general surgeon, and daughter, who worked with a pharmaceutical company. They learned that GIST has an extremely high rate of recurrence and that the characteristics of her tumor, including its size, location and the fact that it had ruptured, indicated a 98% risk of recurrence.

She read about imatinib (Gleevec®), the new drug that was revolutionizing care of GIST tumors, and decided she had to have it, even though it had been approved in 2002 only for metastatic or inoperable GIST tumors. On her own, Sawyer went to M. D. Anderson and met with Jonathan Trent, M.D., an assistant professor in the Department of Sarcoma Medical Oncology.

Specialized care important to patient

Trent encouraged her to participate in a clinical trial testing Gleevec’s ability to prevent GIST recurrence in patients whose cancer had not spread.

Sawyer was elated. “I wanted that drug,” she says. “That’s all I cared about.”

Unrelated to the trial, her tumor also was analyzed to identify the location of a certain gene mutation. That information is now being used at M. D. Anderson to determine the dosage of Gleevec for each GIST patient. Sawyer's analysis showed she would need the standard dose of 400 mg a day, Trent says.

Sawyer had been on the drug for three months when routine tests showed her liver was beginning to fail, forcing her to give up Gleevec temporarily. However, when she resumed treatment, her liver began to shut down again. 

Dealing with complications

Sawyer used her people skills to bring Trent together with William Cassidy, M.D., a liver specialist in Baton Rouge with whom she was consulting. “I was in pretty bad shape. I had no energy. I had liver pain. I was jaundiced. But my goal was to get back on Gleevec,” she says.

Trent and Cassidy worked closely together, sometimes e-mailing each other at 1 a.m., Sawyer says. Cassidy prescribed steroid drugs to treat the liver, and several months later Trent put Sawyer back on Gleevec. With steroids, Sawyer’s liver was able to tolerate the drug. The clinical trial she participated in ultimately demonstrated that Gleevec can slow or prevent cancer recurrence.

Sawyer continues to use both treatments, and she also has become a resource for other cancer patients experiencing similar problems. She talks to patients she sees at M. D. Anderson and e-mails others daily through a national patient group, GIST Support International.

She stresses that help is available and patients need to seek treatment at a cancer center with oncologists who have expertise in treating the disease.

“Because GIST is so rare, physicians and oncologists may not be as informed as they need to be," she says.

As for her own life now, Sawyer counts her blessings. “I am thankful every day for my care, and feel wonderful. I still hunt, garden, work and hope to be on Gleevec forever.”

Resources:

Soft Tissue Sarcoma (M. D. Anderson)

GIST Support International