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A new organization is helping women with cancer to save their hair, one cooling cap at a time.
Kristin Haynes remembers her first thought after her breast cancer diagnosis: “The open-endedness of it all is so alarming.”
“How is my life going to be impacted? How is my daughter’s life going to be affected? Is this going to be something that takes my life the next go-round?” Haynes recalls wondering.
That was in August 2016. Six months later, Haynes completed her chemotherapy treatment and, despite feeling that she was living a strange new existence, maintained some level of normalcy by keeping her hair during treatment. She was able to do that because of scalp cooling technology and the financial assistance she received from HairToStay (hairtostay.org), a nonprofit organization that offers need-based grants to offset the expense of scalp cooling systems for chemotherapy patients being treated in the United States.
Cooling caps have a history of successful use in other countries, but are fairly new to the United States. They are available through several companies here, with two cleared so far by the Food and Drug Administration, the DigniCap and the Paxman scalp cooling systems. The caps work by narrowing the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles.
“This idea of having some control over something in this process, such as my hair, helped me feel like I had a little more control over my life in general,” Haynes said in an interview with CURE®. “That helped me stay hopeful and healthy. It helped me to not perceive myself as sick or unable to do things I had been doing my entire life.”
Shortly before her chemotherapy began, Haynes stumbled upon HairToStay while doing online research about how to keep her hair. She applied to the organization and received partial reimbursement for the cooling caps she was renting from Penguin Cold Caps.
So far, 400 women like Haynes, from all over the country, have been helped by HairToStay, which officially launched in April 2016. The organization raised $490,000 in 2016 and intends to raise an additional $1 million this year. The price of cooling caps varies depending on the manufacturer, the number of chemotherapy sessions and the duration of use. The average cost is $1,500 to $3,000 per patient, and is not covered by all health insurance plans, although Aetna does cover the treatments.
Familiar with the caps and their expense through personal experience, Patsy Graham co-founded HairToStay, along with Bethany Hornthal. Both women volunteer their time to fundraise for donations that offset the costs for any patient who has been diagnosed with a solid tumor, is in chemotherapy and has a household income that is up to three times the federal poverty level.
“There are a number of our recipients who say that,‘Without funding from HairToStay, I wouldn’t have been able to do scalp cooling, period,’ and those are the people we want to make sure we take care of,” said Hornthal.
HairToStay works with the suppliers of five cooling cap brands: DigniCap Scalp Cooling System, Paxman Scalp Cooling System, Chemo Cold Caps, Penguin Cold Caps, Arctic Cold Caps and Wishcaps.
Recent studies published in JAMA Oncology show promising results with the use of scalp cooling. In the SCALP randomized clinical trial, the authors concluded that women with stage 1 to 2 breast cancer receiving taxane-based or anthracycline chemotherapy, or both, who underwent scalp cooling were more likely to lose less than half their hair after the fourth chemotherapy cycle compared with those who didn’t receive scalp cooling.
Preservation of hair may not be complete: About two-thirds of patients have no or minor hair loss with milder chemotherapy (such as taxane-based), but with stronger chemotherapy, such as Adriamycin (doxorubicin), only one-fifth of patients have good results.
And there are some other challenges involved with using cooling caps: Women have reported cold-induced headaches, neck and shoulder discomfort and chills. Manual versions of the caps, which are not automatically cooled by a machine, require the help of another person. These caps are kept in a special freezer before they are worn; however, they begin to thaw out during the chemotherapy infusion session and need to be replaced with colder caps about every 30 minutes.
Hornthal notes the importance of finding an oncologist who is patient-oriented and aware of cooling caps. “It takes a little more effort on their part to have a patient using this device, because the oncologist needs to explain the scalpcooling option and patients may have additional questions at times throughout the process. It also takes more time in the infusion center,” she says.