One of the most common side effects of chemotherapy is losing your hair, but an experimental treatment might change that. Cold cap therapy, which is currently in trials and not yet approved by the FDA, involves wearing ice-filled caps frozen between 15 and 40 degrees Fahrenheit before, during, and after a chemotherapy session. The treatment is showing promise with initial studies proving that a high percentage of patients don’t lose all their hair. Dr. Mitchell Gaynor, an integrative oncologist in Manhattan, is seeing positive results with his patients: “I have had dozens of patients use cold caps and about 70% kept their hair.”
A cold cap selfie of Megan Pischke Porcheron. (Photo: Megan Pischke Porcheron)
Professional snowboarder Megan Pischke Porcheron discovered cold cap therapy two years ago when she was diagnosed with stage-3 breast cancer. Already a volunteer with the non-profit group Boarding For Breast Cancer (B4BC), Porcheron agreed to film her cold cap treatments to share the experience with other women fighting cancer. The footage expanded to cover her two-year battle with the disease in her new documentary, Chasing Sunshine, which debuted in January at the 2015 X Games Aspen. “Hopefully the movie will show that you don’t have to be disempowered. You don’t have to have your power taken away because of life’s inevitable circumstances,” says Porcheron. “The cold capping gave me a little bit of power and control.”
For Porcheron keeping her hair meant that she didn’t look sick, something that helped her self-esteem and confidence. “I could wake up in the morning and fake it, and not think I’m going through cancer,” she says. “It was really helpful to have those moments where I felt like this big crazy life thing isn’t happening. It was still there, but I could put it aside.”
Nancy Marshall, the co-founder of The Rapunzel Project, a non-profit organization dedicated to helping chemotherapy patients keep their hair, agrees. “If you have heart disease, it’s nobody’s business, but when you have cancer and lose your hair, it’s everybody’s.” The option of privacy was an appealing one for Porcheron: “I wanted to be super private. I knew if I had my hair then I didn’t have to have that cancer story every day.” Marshall stresses that having patients keep their hair is not a superficial concern, but a powerful one: “It’s not vanity. It’s looking in the mirror and not seeing a stranger.”
However, like anything there are drawbacks including cost, discomfort, and complications. As the treatment is not FDA approved, patients have to buy the cold caps on their own and bring them to chemo. Several companies rent the caps, including Penguin Cold Caps, Chemo Cold Caps, and DigniCap which may become the first scalp-cooling device to be approved by the Food and Drug Administration. “Patients have to rent the caps and bring them in coolers full of dry ice, along with their own helpers,” explains Marshall. The caps need to be replaced every half hour, so a friend needs to assist for up to seven hours.
“I would say that it was uncomfortable at times,” says Porcheron. “My husband [pro snowboarder David Carreon Porcheron] took this on with me, and there is no way I would have done it without him, you have to have a partner.” For months afterwards, Porcheron dealt with the psychological effects of wearing the cap. “I had really uncomfortable association nausea whenever I was cold.” Porcheron admits that at times she wanted to give up. “There were moments that I would be so nauseous, I would be crying, ‘Eff this, I don’t want to put the cap on.’ But David would remind me that we made a deal that we were doing to do everything 100% not 93%.”
Another issue is the high cost. Insurance doesn’t cover the use of Cold Caps and they add up. “Penguin Cold Caps cost $600 a month and Chemo Cold Caps $400 per chemo treatment,” states Marshall. “With 4 to 6 rounds being common, you are looking at around $2000.” According to Marshall there is financial assistance available for patients who qualify through the nonprofit Cold Caps Assistance Project.
Until the project is FDA approved, however, there are still some doctors who remain skeptical. The concern is that while the cold blocks the chemotherapy from affecting the hair follicles, having areas that the chemo doesn’t reach might allow the cancer cells to grow. “ I think there isn’t enough data yet,” says Dr. Mary Daly. “The potential for metastasis recurrence in the skin, scalp or in the skull itself is there, and it will take some time to see if that is an issue. Until we know for sure either way, I am cautious.” Marshall however says that doctors have been keeping an eye on that issue. “Dr. Hope Rugo did a study in 2011 where she aggregated the data from several cold cap studies and they showed no increase.”
Cold caps also don’t work for all cancer patients—right now it’s not recommended for hematological cancers like leukemia, and instead used with patients who are having chemotherapy after a tumor removal. Dr. Daly isn’t sure if this is the right designation: “The reason for chemotherapy to begin with is that there is concern that there are cancer cells in the blood stream that we don’t know about.”
While most patients keep their hair with the cold cap treatment, many will still often lose some hair. “I did lose close to half my hair, just not in patches. It just thinned, so really no one but me can tell,” Porcheron says. “Even if I would have lost my hair, I would have been ok with it, because I beat cancer.”
Professional snowboarder Megan Pischke Porcheron documented her battle with Stage 3 cancer and using cold caps in the new movie Chasing Sunshine.