Cold days in hell help ensure cancer patients don’t lose their locks
Cancer is a thief — taker of lives, livelihoods, loved ones, body parts and, for many attempting to wrest themselves from its grip, hair. For some, especially women, hair loss can be one of the most unsettling aspects of chemotherapy, the reoccurring use of strong drugs to help kill cancer cells, an experience many describe as hellacious.
Lizzie Cronin knows firsthand. She was that mom at whose home her children’s friends from Lake Highlands High School liked to gather. A few years ago when she discovered a lump in her breast and was diagnosed with invasive lobular carcinoma, she feared the treatments — back-to-back surgeries followed by six rounds of chemo every month — would rob her of the cherished role.
“You will be bald, and everyone will know you are sick,” she thought. She worried about the effect of her changing appearance on her kids, her husband, and, “well, myself when I looked in the mirror.”
The dread loomed large as she faced therapy, she says. In the end, though, only her closest family and friends learned of her illness.
“Today when I talk about having cancer, a lot of people ask, ‘When?’ and they are so surprised. They’ll say, ‘You never looked like you had cancer.’ ”
Cronin saved about 80 percent of her thick blonde locks via scalp cooling, which, through a ton of research, she and her husband Bill learned was a viable solution to chemotherapy-induced hair loss.
Findings to good use
The realization eventually led to the creation of Chemo Cold Caps, a nationally recognized company Lizzie and her friend Rhonda Svedeman now operate out of two neighborhood office suites. One is a typical administrative center with desks and computers and framed family photos; the other is a sterile storeroom showcasing metallic shelves accommodating an impeccably organized, and odd, array of objects: blue beanies, ice coolers, rolls of tape or bandages, thick gloves, pantyliners, spray bottles, stacks of folding hand carts and futuristic, shower-cap-shaped items.
The women have created new ways to deliver existing cold-cap technology, and every item in the room is essential to their trademarked system, Svedeman says.
Saving a head of hair can result in a patient feeling more optimistic, more themselves, which can be pivotal to healing, the women, and their three part-time staffers, believe.
As one local patient puts it, “Cancer, if you let it, can take over your life. I can’t express how freeing it is to be able to go out in the world and still have hair. Chemo baldness is a public announcement of your fight … no one has to know I am fighting cancer unless I want them to know. It is one less thing to worry about and gives me back some normalcy in my days.”
How it works
Scientific studies, including one published in Oncologist journal in 2013, suggest scalp hypothermia might prevent alopecia by constricting blood vessels in the scalp, thus reducing the amount of chemo that reaches the cells of the hair follicles. The cold also decreases the activity of the hair follicles, researchers theorized, making them less attractive to chemo, which targets rapidly dividing cells.
Real-life results have been mixed. Clearly, the operators say, every patient should speak with his or her doctor before embarking on any supplementary medicinal treatment.
The Cronins’ personal experience, with follicle-freezing caps ordered from a company in England, indicated that cooling worked. But the complexity of the procedure probably resulted in letdowns for a large number of users.
“This is not an easy task,” Lizzie explains. “The caps go on your head at minus-23 degrees Fahrenheit and need to be changed every 20 minutes for almost seven hours. Along with the caps, we had to purchase two coolers and 100 pounds of dry ice for every round of chemo to keep the caps cold.”
And that was just the start — there were extensive supplies required — the aforementioned sanitary pads are taped to ears to prevent frostbite, for example — and rules for handling dry ice that made cold capping a prohibitively complex ordeal for some cancer patients.
“There are so many parts and requirements to make it work, and if you don’t begin the regimen at the start of chemotherapy, then the horse is out of the barn,” Lizzie says. “It won’t work.”
This system is not a standard service at cancer care centers, so all labor is entirely left to the patient and loved ones.
Lizzie says that after her tress success, her husband committed to start a company that would not only increase awareness of the scalp-cooling route, but also create a more user-friendly system.
Status quo methods were so arduous, and, at about $500 a month, costly for something not guaranteed to work. For those willing to give cooling caps a shot, the Cronins’ wanted to provide the best possible chance at success.
“Our goal was to make sure that [they] knew that going bald was not the only option,” Lizzie says.
The first thing they needed was something that would more efficiently hold the caps in place, so Bill sought the help Svedeman, a family friend, neighbor and talented seamstress who helped create a strap to secure the cold cap.
“They sat at the kitchen table cutting and sewing for about two hours coming up with the right design,” Lizzie recalls.
Then there was the problem of having to keep the caps at the right temperature longer. For that, Rhonda came up with an insulating cap. It looks like a shower cap, but thick and silver, and it fits over the whole cooling ensemble.
When a patient orders from Chemo Cold Caps today, she receives all she needs to most effectively cool the scalp during treatment: An ice chest containing six DigniCaps — the only brand approved by the FDA — a clipboard containing specific instructions based on the patient’s individual chemo regimen, a supply bag containing the sundry items used in preparation. The only thing the recipient needs to add is dry ice, and she receives specific instructions on how to do so.
Chemo Cold Cap clients also are paired with a personal consultant or “capper,” one of three trained specialists who supports her throughout the process. A capper joins local clients for the first treatment and demonstrates the process. For out of towners, there is extensive communication, videos and other forms of support.
The cap, especially with straps and insulation added, is snug and uncomfortable even while room temperature — at -23 degrees it seems unbearable for the first few moments, some report, and the process is tedious. The cost is $500 a month. But many testify that it is so worthwhile.
“It was a learning experience at first, and then you got into a groove. My daughter, daughter-in-law and neighbor caught on quickly doing two rounds each. It is true that the caps are very cold but not something you can’t do,” notes a patient named Ann from California. “I feel healthy with a positive attitude when I look in the mirror every day. This helps with my overall recovery.”
Some patients learn about cold caps from their oncologists, while other doctors and nurses do not know about or recommend the procedure.
Cronin and Svedeman hope that soon the caps and their trademarked system, and other cooling components that they hope to patent soon, will be a regular element of chemotherapy treatments.
Something that even will be covered by health insurance.
An option that won’t require cancer patients to cart an ice chest on a handheld dolly to chemotherapy treatments.
“We hope all this (looks around the storeroom) will be considered rudimentary someday.” Svedeman says with a smile, “That it will be in a museum.”
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