By Nancy R. Elliott
The Herald Bulletin
“It’s just a part of your identity,” said Pendleton-area cancer survivor Gay Doss. “As it comes out, it just kind of hits you… Your hair is your identity. When you don’t have that, it’s hard.”
That’s where an alternative therapy known as the cold cap comes in, and local hair stylist and owner of Anderson’s Medusa Hair Salon Stacie Leons-Parnell is on a mission to make sure it’s available to those who want it.
The cold cap is precisely what the name implies. The cap is frozen to a very cold temperature and worn by the chemo patient to cool the scalp. The idea is to cool the hair follicles so that chemotherapy toxins can’t reach them, and the patient keeps their hair. The therapy involves switching out several caps to maintain the cold temperature.
The Rapunzel Project, a nonprofit organization devoted to raising awareness of this option, notes that the caps have been in use in Europe for more than 15 years with good results. Nancy Marshall, co-founder of The Rapunzel Project, said that the caps, based on feedback they have received, are highly effective. “It works almost all the time.”
“It’s empowerment. It’s having control over something at a time when you don’t have a lot of control. It’s privacy,” said Marshall. Additionally, she said, for some,“If you don’t look sick, you don’t feel sick.”
In the United States, however, the option has still not been approved by the Food and Drug Administration. As a consequence, patients remain unaware of it and it is usually not covered by insurance. Cap rental runs about $1,600 over a three-month period. Still, the caps, particularly a brand known as Penguin Cold Caps, are being put to use.
Sometimes, patients bring the caps with them to their chemotherapy along with a supply of dry ice. A buddy helps switch out the caps during therapy.
Another solution is a biomedical freezer place on-site in which to store the rented caps. Right now, however, there are only about 50 freezers placed around the country for chemotherapy patients to use. In Indiana, there is only one – in Westville in northwestern Indiana.
In Anderson, Medusa Hair Salon’s Stacie Leons-Parnell has been raising funds for the Rapunzel Project since 2012. In June this year, she was joined by hair stylists around the county in a fundraising effort which brought in about $1,000, and they secured the donation of a new biomedical freezer from Helmer Scientific in Noblesville. It now sits at the salon, waiting for a home.
“How cool would it be to have people come to Madison County to get their chemo because they can keep their hair?” asks Leons-Parnell. “Why can’t we be on top of this?.... We should be innovative.”
Leons-Parnell approached both Community Hospital Anderson and St. Vincent Anderson Regional months ago about making the therapy available. Although both facilities expressed interest, nothing developed.
“We are open to it,” agreed Marsha Sherrell, director of cancer services at Community Hospital Anderson. The problem right now for Community is logistics – the current facility is crowded. “We do eventually want to be able to offer that… It’s a matter of getting in the new building.” The new facility will open in 2014. Sherrell is also concerned about patient education.
“This is a very cold cap. There are complications that could happen from that,” said Sherrell. She expressed concerns about possible frostbite or lowered blood chemistries. “I’m not opposed to it. I want to make sure we have the right steps in place.”
Sandra Crawley, director of St. Vincent Anderson Cancer Center and Clinical Research Department, said, "Our medical oncologists have reviewed the Penguin Cap information and the local initiative. Our physicians cannot recommend to their patients the Penguin Cap therapy supported by the Rapunzel Project.
"The few clinical studies that have been conducted do not support a clear benefit that outweighs the potential risks, such as metastasis of the scalp and frostbite. One of our medical oncologists worked with Cold Caps at another hospital. He found that the therapy was not reliable in preventing hair loss and was not comfortable for the patients.... As with all emerging technologies, we will continue to study and closely monitor the risks and benefits of and alternatives to cold cap therapy," she said.
“We haven’t had a single clinic complaint,” said Rapunzel Project's Marshall. She noted that problem areas she’s heard about mainly involve lessened effectiveness. Persons with very thick hair fall into that class. She has also heard of occasional instances of fever or dehydration. “Hydration is critical.”
While she waits to find a home for the freezer, Medusa’s Leons-Parnell expresses frustration.
“I’ve been a hair stylist for 30 years,” said Leons-Parnell. She noted that every hairdresser in town has had to deal with a client that suffered hair loss from chemotherapy. “It’s devastating…. People need to know they have an option.”
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