Facing cancer, Georgia woman volunteers to test experimental treatments

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Carolyn Higgins is a regular in the infusion center at Emory's Winship Cancer Institute in Atlanta.

But back in 2007, when Higgins was diagnosed with multiple myeloma, a type of blood cancer that affects plasma cells, she remembers thinking that couldn't be possible.

She didn't feel sick.

How could she have advanced cancer?

"This isn't going to happen to me. I won't let it," Higgins remembers thinking.

She knew her cancer is incurable and was told the average survival of someone with her stage of myeloma was about 2 to 5 years.

But Higgins has grandchildren she is determined to see grow up, and cancer wasn't going to get in the way of that.

So, she started chemotherapy, the standard course of treatment.

"It did absolutely nothing," she says.  "That is kind of when I got this thought that, I've got to do something other than what they're doing."

Higgins' oncologist, Dr. Sagar Lonial, Chair of Emory Department of Hematology and Medical Oncology, told her there were some other standard medications they could try that had helped other multiple myeloma patients.

"She didn't want to do that," Dr. Lonial says. "She said, "Put me on a trial, give me something new, give me something innovative. Give me something that is really going to make a difference.'"

So, Higgins joined a phase 1 clinical trial here, agreeing to be one of the first myeloma patients in the U.S. to test a then-experiment treatment designed to harness her immune system to fight her cancer: the monoclonal antibody pomalidomide.

The therapy had shown promise in lab mice but was untested in humans.

"So, we didn't know, would it work," Lonial says. "And. if it did work, how long would it work?"

A decade ago, Dr. Lonial says, patients like Carolyn Higgins joined phase 1 clinical trials to help other patients down the road.

Only 1 to 2 percent saw any direct benefit from the drug they were testing.

And there are risks involved.

"But from her view, I think, the upsides were so much bigger," Dr. Lonial says. "She was willing to take that risk."

Higgins says she trusted Dr. Lonial and the Winship Cancer Institute team, and she believed in the process.

"I think one of the things that took away the fear was, it's phase 1, so the drug company is watching carefully, and I knew the FDA was watching very carefully," Higgins explains.

During that first trial, Higgins says she felt tired but had no negative side effects.

For 5 and a half years, the drug worked.

When it stopped, she took a break and joined another trial, this one a larger phase 2 study of another monoclonal antibody similar to the one she'd helped test.

"And here I am 3 and a half years later," she says. "And, my numbers, I just got them today, they're holding steady,"

Carolyn Higgins is now 11 years out, and, she says, stronger than ever.

"I have asked Dr. Lonial if I'm cured yet," she smiles. "He said, "You're in a very good partial response."

Laughing, she says, "I'll take it. Sounds like a cure to me."