Cold therapy limited hair loss, speeded regrowth: Alexis Rose-Hamburg

She first had a bilateral mastectomy. Alexis was sitting in her radiation oncologist’s office, talking about the plan for radiation treatment, when her Oncotype DX test results came in. The test examines tumor tissue removed during surgery to assess recurrence risk and predict benefit from chemotherapy.

Her radiation oncologist shared the test findings with her and discussed her score. It was mid-range, high enough for her doctors to advise she have chemotherapy. “The news of needing chemo probably hit me even harder than someone telling me I have cancer,” Alexis says.

The decision was up to her. Alexis thought immediately of chemo’s well-known rigors, especially hair loss. As the vice president of sales for a large company, she worried that concern about her appearance could affect her professional and personal life, as well as her privacy. “I did not want to be walking around the food store and having people stare at me,” she says. “I wanted to be able to tell my story when I wanted to tell my story.”

Her radiation oncologist reassured her about having chemo. The doctor noted that she was young and healthy, and that chemo would give her an opportunity to prevent recurrence. When Alexis voiced her fear of losing her hair, the doctor said, “You don’t have to. You can do cold capping.”

Alexis had never heard of the therapy – also known as scalp cooling – used to prevent chemo-related hair loss, but she immediately set out to learn more. She read about it online and talked with women who had used it, including several she connected with through LBBC.

Scalp cooling involves wearing frozen caps or helmets at infusion sessions, to constrict hair follicles from chemotherapy and reduce hair loss. Caps are like ice packs for the head and are changed several times during each session.

Once she knew a bit about the technique, “my job was to figure out how the hell I was gonna get through it,” she says.

Cold cap treatment

Alexis’s cancer center didn’t have its own scalp cooling system or a medical freezer for caps, as some do. Instead, people receiving chemo could rent cold cap supplies from private companies. They would use the supplies during chemo infusions and follow rules for protecting their hair during treatment and afterwards.

Alexis wanted to understand how to navigate the cumbersome capping process for best results. She talked with people who had done scalp cooling. Some had good results; others didn’t. “I knew it was going to be up to me, at least some of it, for how successful it was,” she says.

Because she was treated during the COVID-19 pandemic, her cancer center wouldn’t let Alexis bring a friend or relative to help her during infusions. She chose to rent supplies from a company, Arctic Cold Caps, that could provide a registered nurse to go with her, assist in changing caps, and other needs – for an added fee. The cancer center approved that professional helper.

Alexis recalls walking into the infusion center with the nurse, the two of them toting what she needed for each session: two coolers, dry ice, multiple frozen caps, and a suitcase stocked with extra socks and electric blankets. “I looked like I was going on a two-week cruise,” she says, with a laugh. She also was doing a separate but similar therapy to lower her risk of chemo-caused neuropathy. For that, Alexis brought along bags of frozen peas to hold in her hands and frozen slippers as ice packs for her feet.

She had four infusion sessions. In each, the first frozen cap went on her head an hour before infusion began. Caps were switched at regular intervals. Alexis wore the caps throughout the session, afterwards while travelling, and at home – for a total of eight hours. During infusion, she wore the frozen slippers and held the frozen peas for one hour.

While using scalp cooling, she could only wash her hair once a week, using a tiny amount of shampoo and a dribble of cold water from a handheld shower. She could take a hot shower but couldn’t wear a shower cap or let hot water touch her hair or scalp. Hair brushing was not allowed and only a wide-toothed comb could be used. Others who had done scalp cooling summed up the regimen as, “Treat your hair like glass.”

She noticed some hair loss, especially after the second infusion. Overall, Alexis thinks she lost 30 percent of her hair from chemo. “If you didn’t know me you would never know,” she says. “I lost most of it from the top of my head. My part got really wide.”

After chemo ended, Alexis kept up the hair care routine for two months. She then switched to using warm water, followed by increasing hair washing to twice weekly. Gradually, she could brush her hair. Six months after her last infusion, she went to her hair stylist for a color and cut. “I cried the whole time because I was terrified my hair would fall out,” Alexis says. It did not.

“For the first time in a long time I felt like a version of myself,” she recalls.

Alexis before, during, and after chemotherapy treatments

Rapid regrowth

Her hair grew back more quickly than Alexis expected. Six months after chemo, three inches of new hair had regrown on top of her head and some at the nape of her neck, where she also had lost hair.

“That was the biggest surprise for me, how fast my hair grew back,” Alexis says. “I attribute that to the cold capping, for sure.”

It’s now been nearly two years since she finished chemo. The hair that regrew on top of her head is chin-length, while the hair she didn’t lose is at her shoulders. Alexis describes her hair type before breast cancer as being “straight to wavy.” Afterwards, the hair she kept is curly and her new hair is “poker straight.”

Scalp cooling is costly and not covered by many insurance plans. It’s even more expensive if you hire a nurse to help, as Alexis did due to pandemic restrictions. The therapy cost her $5,000 out-of-pocket for four sessions of the capping process and nursing help.

The result was worth it, she says, both for how well cold caps preserved her hair during treatment and the rapid regrowth she experienced. “I did not have to worry about anyone feeling sorry for me because of how quickly my hair grew back,” she says. The therapy to prevent neuropathy also worked for her.

Alexis now is a board member of Unite for HER, an organization near her home in Royersford, Pa., that helps people with breast cancer and ovarian cancer.

Every few months, through her circle of friends, she talks with someone recently diagnosed with breast cancer. They often have questions about her scalp cooling experience.

“It’s hard talking about what happened, but I remember how helpful it was for me to talk to women. I want to provide that same support,” she says. “Support from women that have gone through it was, quite frankly, the best support anyone can get.”