For Donna Tookes, a breast cancer diagnosis in January 2014 at age 59 came with a devastating realization: She could lose her signature locks.
Her hair first became an eye-catching feature when she was 25 and the tresses turned a premature silver. The cancer diagnosis meant chemotherapy, which meant her hair would inevitably fall out.
"It's over. You had it, now you won't have it,” Tookes told herself at the time. "So, get used to it."
But the Stamford, Connecticut, woman was able to keep her hair during cancer treatment — and the little bit of comfort it brought in a journey filled with turmoil — thanks to a scalp cooling system called DigniCap.
Her husband, Darryl, learned about a clinical trial for the technology as Tookes was grappling with how to cope with the disease, knowing that she would eventually need chemotherapy treatments as well.
"I just walked out the room," she said. "I felt dizzy, weak at the knees, because I just envisioned me, very skinny, with no hair, going through chemo."
She couldn’t even bring herself to research her illness, so that fell to Darryl. Once he knew her cancer was treatable and curable, he turned to the issue of Tookes’ hair.
"I put all of my focus into trying to figure out how best to make her as comfortable — and make our family as comfortable — during those challenging months ahead," Darryl Tookes said.
During his travels as a musician, he said he found a clinical trial for DigniCap, a system that allows patients to keep their hair while they undergo chemotherapy. The device was created by the Swedish firm Dignitana, and is pending approval by the FDA.
More than 100 women at five hospitals across the country have used the system as part of a clinical trial. The process involves wearing a tight-fitting cap attached to a machine that cools the scalp to 37 degrees, before, during and after chemotherapy.
When the scalp cools where the hair follicles are, it slows the metabolism of the follicles so that they don’t divide as quickly, said Dr. Hope Rugo, the director of breast oncology clinical trials at the University of California, San Francisco.
"Cells that aren't dividing as quickly are less susceptible to the effects of chemotherapy that kills rapidly dividing cells," she said.
To get his wife into the trial, Darryl Tookes wrote a letter that Donna Tookes described as "incredible."
In the letter, written a year-and-a-half ago, he said that the program would "benefit tremendously by selecting this beautiful, mature youthful looking woman to be a model.”
"It will inspire millions to see my wife in this light," he wrote. Dr. Paula Klein at Mount Sinai Beth Israel Hospital, an hospital participating in the clinical trial, received his letter, and enthusiastically enrolled Donna.
Rugo, the trial's chief investigator at the University of California, San Francisco, said 70 percent of the women in the trial kept more than 50 percent of their hair.
"A small number of women embrace the hair loss as, you know, a sort of badge of courage," Rugo said. “But I have to say, for the majority of women, this is a very, very big issue."
With the use of the cap, Tookes said, she was able to keep all of her hair — and could choose to stay more private about her battle with cancer.
"I didn't have to walk into the grocery store and have people, the same people that had complimented me for so many years, to understand that I was going through something," Tookes said. "I still looked like myself, even though I was going through life-saving treatment."
