When Kim Nyalka decided on chemotherapy for her breast cancer, first she looked into wigs.
Then she thought of her 7-year-old daughter's fingers stroking her hair and remembered long-ago baby fingers twirling it. And Nyalka decided to try scalp cooling.
Scalp cooling is a treatment that uses cold caps on the head to prevent hair loss during chemo.
A year into her chemotherapy, Nyalka, 47, of Whitehall, Pa., has kept her hair. It has been a cumbersome process with each treatment requiring 80 pounds of dry ice, hundreds of dollars, hours of brutal cold and plenty of assistance from her husband, but for her it has been worth it.
"It's really made this past year of treatment much less of an issue -- for me and for my family," she said. "Just for keeping normalcy in our family, not having her worry, and not having her be afraid."
Scalp-cooling devices are not approved by the U.S. Food and Drug Administration, so patients must rent them from a company and operate them themselves. But one brand of the caps, DigniCap, is nearing approval by the FDA.
Nyalka uses Penguin Cold Caps, invented in England about two decades ago and used in the United States for about 15 years. Other brands include Chemo Cold Caps and Paxman Cooling Caps.
Chemotherapy works by attacking dividing cells such as cancer cells, but it also attacks those in hair follicles. Scalp cooling constricts the blood vessels
that lead to the hair follicles, reducing the amount of the drugs that reach the follicles.
The manufacturer of Penguin Cold Caps says the technology is effective in about 86 percent of patients, though that figure varies depending on the specific chemo drug.
A report on a five-year U.S. clinical trial of the DigniCap, released recently at the American Society of Clinical Oncology, said that the caps prevented hair loss in 70 percent of patients, versus the control group where 100 percent experienced significant hair loss. In the United States, only those enrolled in clinical trials have had access to DigniCaps.
Thousands of people in the United States have used Penguin Cold Caps over the years, and about 350 are using them at any given time, said Frank Fronda, the company's inventor and director.
22 BELOW
Nyalka has received chemotherapy treatments at Allegheny General Hospital every three weeks for about a year. For each treatment, she and her husband pick up 80 pounds of dry ice from a facility in the area and load it into coolers they bought. The caps are rented from the company for about $600 per month and must be cooled to a precise temperature -- minus 22 degrees -- that is colder than standard freezers.
Her scalp must be precooled by the caps before the chemotherapy begins, and the caps are left on during the therapy and for three to four hours after. The caps also must be changed for a freshly cooled one about every half hour to maintain the correct temperature.
"When I first put them on, particularly during the first cool-down, it's so cold it hurts," said Nyalka, who wears heated blankets during treatments. "You sort of get used to it, and then it doesn't bother me as much."
ADVOCACY GROUP
In many other cities nationwide, the process is somewhat simpler. A Minneapolis-based foundation called The Rapunzel Project, which works to make scalp cooling easier for cancer patients, has donated medical freezers to dozens of cancer centers and hospitals around the country when the facility or a patient has requested them. Freezers help conserve the dry ice so patients don't have to buy a new batch for each treatment.
When Nyalka brought up the caps with her doctor, he didn't discourage her from using them, but said he wasn't convinced of their effectiveness. Other doctors are more skeptical.
"I don't personally recommend or use them," said Helen Analo, an oncologist with Allegheny Health Network. "It's uncomfortable, it's not that effective, and most women regain their hair anyway after chemotherapy."
Analo said that she has concerns about the possibility that the caps will create a "cancer sanctuary" in the scalp because the chemotherapy drugs are reduced there, citing two case reports of patients who have used scalp cooling who contracted cancer in the scalp years after treatment.
For Adam Brufsky, co-director of the comprehensive cancer center at Magee-Womens Hospital and the University of Pittsburgh Cancer Center, the recent DigniCap study satisfied his concerns about the possibility of scalp cancer. The study found no evidence of an increase in scalp metastases in patients who have used scalp cooling.
An article about scalp cooling on the website of the American Cancer Society that was reviewed in December, before the recent report on DigniCaps, states that controlled studies of scalp hypothermia have produced conflicting results, that many of the best outcomes from scalp cooling have come from studies in the Netherlands, that some people lose some hair despite scalp cooling and that it appears people with thicker hair are more likely to lose hair.
The article urges readers to discuss pros and cons with their oncologists.
LIMITED PRODUCTION
Brufsky knows of patients who have "very very uncommonly" used cold caps over the years. "The older technology does work, but it's cumbersome and hard to use," he said.
Newer DigniCaps stay on the patient's head during chemotherapy and do not need to be changed, keeping their temperature constant by circulating a cold gel through the cap. One unit can be used by just two patients at a time.
Even after the likely FDA approval, they will be available on an extremely limited basis until the company perfects its technology and scales up production.
Dallas-based Chemo Cold Caps and Paxman Scalp Cooling in the United Kingdom also have caps available for sale or in clinical trials.
The effect of hair loss on cancer patients is about more than just vanity, said Nancy Marshall, co-founder of the Rapunzel Project and a breast cancer survivor.
"If you have heart disease and you walk down the street, no one knows. When you have diabetes no one knows -- your medical situation is your business. When you have cancer, it's everyone's business." She cites the benefits on a patient's identity, privacy and self-esteem that can come from preserving the hair during chemotherapy.
Nyalka is happy to have her daughter laugh about the "funny cap" she wears home from chemo treatments -- while still running her fingers through Nyalka's hair. She is thankful that she was able to afford scalp cooling.
"I would love to see it more readily available to more women," she said. "They ought to at least know that you have a choice. Psychologically, it makes you feel like you have some control over something that has happened to you."
ActiveStyle on 08/10/2015