In the summer of 2009, Shirley Billigmeier of Long Lake, Minnesota, learned that she had an aggressive type of stage I breast cancer and would need chemotherapy to limit the chance of a recurrence. Billigmeier assumed she’d lose her dark brown hair, so she began shopping for a wig.
While researching her options, she discovered cold cap therapy, a process that has been used to help stop chemo hair loss for more than a decade in Europe, but isn’t well known in the United States.
Cold Cap Therapy
Billigmeier contacted Frank Fronda, the scientist who’d invented the caps, and he gave her a list of patients in the United States who’d used the caps. “That was great because we learned from each other what worked,” she says. “It was about women helping other women.” All of them had managed to keep their hair.Wearing an extremely cold cap slows the rate at which hair cells absorb the chemo drugs, helping to prevent hair loss (though hair may thin).
But because the caps must be changed every thirty minutes during chemo treatments and stored in a freezer around -22° F, cold cap therapy requires either massive quantities of dry ice in coolers, or a biomedical freezer, which can cost several thousand dollars.
Nancy Marshall, a friend of Billigmeier’s and a breast cancer survivor herself, sprang into action. “It was a lot of money,” she admits, “But I said, ‘I don’t know anybody that hasn’t been touched by cancer, so I bet we could raise the money.’” Marshall emailed several of Billigmeier’s friends, who forwarded the fundraising appeal on to their friends, and ended up raising more than $7,000 for the purchase of a biomedical freezer.
Marshall says the oncology nurses were initially skeptical of Billigmeier’s cold caps. But “when she walked into her third treatment and still had her hair, they stood in a row and clapped,” recalls Marshall. “It was thrilling beyond anything I can describe to you. Her oncologist told her he never for a minute thought the caps would work, but he saw no reason to burst her bubble ahead of time.”
The Rapunzel Project
Marshall agrees. “When you’re done, you wind up looking like the exact same person," she adds. "It changes the year for you. There are people who never get their hair back [after chemo]. A lot of people get their hair with weird textures. Some people would prefer not to be the subject of people’s stares. This gives you the opportunity to control who you share [your cancer diagnosis] with.”
After seeing the effectiveness of the cold caps, Marshall and Billigmeier founded The Rapunzel Project, a nonprofit organization committed to spreading the word about cold cap therapy for chemo patients.
“Just knowing you have a choice of that side effect is important,” says Billigmeier. “They’ve worked on the nausea [brought on by chemo], but there’s never been a discussion about losing your hair. When you know you have the choice, it gives you a sense of ownership and strength.”
Cold cap therapy is not yet approved by the FDA, but there are a few clinical trials of a Swedish cooling system to prevent chemotherapy hair loss.
“I think when the awareness is out there, [demand for more research] is going to be patient-driven,” says Billigmeier. “Our main goal is to tell women that this is a choice.”
Learn how to help the partners and families of breast cancer victims!
Kenra Professional has adopted The Rapunzel Project as its company charity and has donated $50,000 to support the organization’s efforts to help cancer patients keep their hair.
Visit The Rapunzel Project website to learn more about the project and about cold cap therapy.