Not many songwriters try to work “maxillectomy,” the surgical removal of the upper jaw, into a tune. But Charlie Lustman sings about the cancer that claimed most of his with a smile.
Lustman, dressed all in white and lugging his “love guitar,” visited Medical College of Georgia Cancer Center on Wednesday to sing and entertain patients. His visit, and others he has made to cancer centers around the country, was sponsored by ZIOPHARM, a pharmaceutical company that is testing a drug to treat soft-tissue sarcomas.
Sarcomas are a widely divergent family of cancers that arise from stem cells and, like stem cells, can differentiate into a number of forms. Some attack the bone, like the kind Lustman had, while others attack connective tissues or muscle, said Dr. Sharad Ghamande, the director of GYN oncology and principal investigator of the clinical trial for the drug at the cancer center. Altogether, they account for about 1 percent of all cancers, but because they are so rare they don’t often attract big clinical trials from companies eager to create drugs to treat them, he said. Treatment is often radiation and surgery.
“But the problem starts when sarcomas come back and they metastasize,” Ghamande said. “Your treatment options are not good right now.”
The clinical trial is looking at a drug called palifosfamide, a derivative of an earlier sarcoma drug called ifosfamide. The earlier drug had serious toxic side effects, sometimes harming nerves or causing bleeding in the bladder, Ghamande said.
“As a consequence ifosfamide is a very hard drug to give and many elderly patients choose not to have it because of the toxicities, so it denies them treatment,” he said.
Lustman does not have fond memories of taking the drug, which made him worry about his kidneys and his hearing.
“That kicked my butt,” he said. “That was one of the most toxic ones I took.”
The new drug does not contain the elements that caused the previous toxicity, and there is some experimental evidence it works against cancer cells resistant to the old drug, Ghamande said.
Getting approval for the drug would help, “especially for people who are not surgical candidates,” he said.
And it would bring more attention to sarcoma, Lustman said, which he tries to do with his visits and his music.
Since a bump on his gum line was diagnosed as osteosarcoma in March 2006, most of his upper jaw was cut out and replaced by a prosthesis that allows him to sing and talk. A song he wrote about his experience sums it up this way:
“Oh man, it’s so surreal to me/This life that we’ve got/Because one day you are in control/Then suddenly, you’re not.”