Craig Lustig was 27 years old when he was diagnosed with a germ cell tumor brain tumor in May 1992. Craig’s first course of treatment was surgery to partially remove one of two tumors that was pressing on his brain.

After surgery, Craig’s doctor presented him with two options for eliminating any cancer cells that were not removed by the surgery: whole brain radiation or outpatient chemotherapy provided through a clinical trial. Craig chose to participate in the clinical trial, as he was concerned about some of the side effects of whole brain radiation, which can include edema, or swelling of the brain, as well as effects on memory or cognitive functioning.

During the course of his participation in the trial, Craig received outpatient chemotherapy at a hospital-based cancer center for three days each month for six months. As part of the trial, Craig frequently underwent testing to monitor his blood counts, and he received multiple MRIs that provided very detailed pictures of his brain to find tumors and determine if a tumor has spread into nearby brain tissue. Craig’s treatment through the clinical trial was complete in December 1992 and his doctor told him that he showed no evidence of disease.

Unfortunately, Craig had a recurrence of his brain cancer in October 1993. Although Craig was interested in being treated through a clinical trial once more, at the time he was not able to find one that would meet his needs. Instead, he was treated with a low-dose of radiation in combination with a different type of chemotherapy.

Ultimately, this treatment regimen was successful in putting Craig into long-term remission. Craig is glad that he was able to participate in a clinical trial during the course of his treatment. “The trial that I participated in ultimately led to a better treatment and less toxicity for others with my tumor type,” he said

Craig’s experience as a childhood cancer survivor and his passion for advocacy led him to become Executive Director of The Children’s Cause for Childhood Advocacy, a nonprofit organization that works as a national catalyst to stimulate drug discovery and development for childhood cancers, to expand resources for research and treatment, and to address the needs and concerns of survivors.

Last Updated: March 31, 2009