Hair Loss Should Be Optional: Cold Cap Therapy

“Your hair is part of your sense of identity,” shared Vivian* in last week’s blog.

Vivian chose to do “Cold Cap Therapy” during chemotherapy allowing her to keep much of her hair. “Most people I come in contact with probably don’t notice that I’m a breast cancer patient. I really have to say, it’s good not to be noticed like that,” Vivian shared.

There are many reasons you may not want to lose your hair during chemotherapy:

• Your daughter (or son) is getting married and you want all eyes and attention on the happy couple and not your cancer treatment.
• You are a young mom (or childcare worker/teacher) not wanting to scare or worry your children.
• Your parent has dementia or Alzheimer’s and hair loss would render you unrecognizable to your loved one.
• You are a private person and don’t want anyone at work (or anywhere you go in public) to know you have breast cancer.
• You want to look and feel normal.

Can you add to this list?

“People assume that they will have to lose their hair if they have a certain type of chemotherapy. And that’s not necessarily the case,” begins July Iverson, Capping Consultant at Cold Cap Therapy Midwest.

With Cold Cap Therapy, hair loss is kept to a minimum. Cold caps – tightly fitting, helmet like hats filled with a Crylon Gel – are chilled on dry ice to around -22°F (-30°Celcius). They work through vasoconstriction: the cold narrows the blood vessels in the scalp, which reduces the amount of chemotherapy that reaches the hair follicles. The less chemotherapy in the follicle area, the more likelihood of the hair not falling out.

Judy reports, “The first 2-3 caps are the coldest of the day. After that, every time you put a new cap on, the first couple of minutes feel a little cold, but your scalp is in a fort of frozen state and soon our client might be checking with us…’Are you sure this cap is cold enough?’.”

The caps “weigh about 3 pounds each, so it’s a bit of an adjustment to their neck and shoulders,” Judy shares. “We encourage people to lay back in the chair and take pressure off their neck and shoulders. Sometimes they even fall asleep,” Judy laughs.

“Cold Cap Therapy is a commitment. We pre-cool the scalp for 50 minutes prior to chemotherapy, then through the chemotherapy infusion, and then 4 – 5 hours after chemo is done. It’s an all-day affair.” Judy explains.

“But Cold Cap Therapy is one thing on chemo day. There are rules to follow at home too. Being careful with washing and combing your hair with a wide tooth comb and not a brush is important. No coloring, no products like hair spray, gels, powders, no shampoos with nasty chemicals, and, you need to follow this protocol for 6 months after the end of chemotherapy. The hair follicles are vulnerable and fragile during this time.” Sometimes patients decide not to follow some of the rules, resulting in hair loss and shedding that didn’t need to happen, which is difficult for everyone involved.

While the amount of time prescribed for Cold Cap Therapy and the success of it depends on the cancer and the type of chemotherapy (e.g. Adriamycin and Cytoxan are very hard on hair and require more time spent cold capping), most patients keep about 90-95% of their hair with Cold Cap Therapy.

Besides the time commitment, Cold Cap Therapy is a financial commitment as well. “While some people have luck with insurance covering cold capping, I don’t know of anyone that has gotten it covered 100%. Clients have to pay for Cold Cap Therapy out-of-pocket up-front, and then submit to their insurance carrier after chemotherapy. Hopefully there is some coverage,” reports Judy.

Most cold cap service companies offer different levels of price points. Judy’s company, Cold Cap Therapy Midwest, offers three levels of service for their clients because not everyone can afford full service (Note: all of these service options also require renting the caps over and above the services mentioned below):

1. “The first option is to just rent the caps from Penguin (the manufacturer of the cold caps our company uses), and not hire any of our services. We answer questions on the phone, email the Penguin instruction guide and the client drives to us to pick up the Penguin equipment. The client is responsible to buy 55 lbs. of dry ice for each treatment and brings everything in the rolling cooler given to the client by Penguin for the chemo sessions. The client or the client and her team rotates through 3 caps during each session, changing out a new, cold cap every 20-30 minutes.”
2. “For the second option, the client hires us to host a Family and Friends Training for a one-time fee of $475. A 3-4 hour training brings together anyone helping with Cold Cap Therapy. After answering all the questions friends and family have, we demonstrate how to load and unload the cooler with dry ice, how to rotate the caps for use, and how to use the cap, how to prepare the cap before it goes on the head, how to correctly place the cap on the head, all the tricks on placing the straps right, how to take the cap properly off, and finally, cleaning the caps. After that we practice, practice, practice with the family or friends and critique and correct them over and over again. It’s important to us to make sure the friends/family are comfortable doing the capping prep, the capping itself, taking the cap off, and cleaning it well. We actually don’t let them leave us until they have full confidence in themselves. Then these clients are off and running, picking up the dry ice themselves and bringing all the necessary essentials list of things we’ve provided them with for capping on chemotherapy days.”
3. “The final option is to hire us to do everything. Not everyone is comfortable asking other people to be responsible for their hair and it’s possible loss. Or maybe they don’t’ trust their spouse or mom to remember all the details of Cold Cap Therapy while in treatment. Full service means we pick up the dry ice and bring all of the supplies with us to each chemo session. We stay with our clients all day long whether they are at the clinic or at home and cap them, which of course gives them the best chance at success. We also communicate with the nurses about timing the caps, and do some educating with the staff if they are not familiar with Cold Cap Therapy. We charge $650 for each day spent in chemotherapy with our clients for full service. They have no worries about Cold Cap Therapy because they have a professional with years of experience doing all that is necessary.”

Judy believes that not wanting to lose one’s hair due to chemotherapy isn’t a vanity issue. “I believe that mental health is tied to physical health. If you walk by a mirror and don’t look sick because you have your hair, that makes a huge impact on your mental health. You don’t have to lose your hair. It’s so exciting to know that you have an option to keep it!”

And Cold Cap Therapy is an option for doing so. The following are resources on cold capping:

• A pilot evaluation of cold-capping efficacy under real world conditions for the prevention of chemotherapy-induced alopecia in early stage breast cancer
• The Rapunzel Project – a nonprofit organization dedicated to helping women and men undergoing chemotherapy access and use scalp-cooling technology to help keep their hair.
• Hair to Stay Foundationoffers grants to pay for scalp cooling costs.

The following are companies that provide cold cap services in the Twin Cities (note: not all are located in the Midwest, so caps are shipped to you during treatment):

• Cold Cap Therapy Midwest and Penguin Cold Caps
• Polar Cold Caps
• DigniCap
• PaxMan Scalp Cooling System
• Arctic Cold Caps

A tremendous thank you to Judy for sharing information about Cold Cap Therapy and for all of the cold cap technicians who work tirelessly to help women going through cancer treatments to keep their hair!

*Name changed to protect privacy.

Written by Amy Tix, Firefly Staffer and 14+ year breast cancer survivor, who would have enjoyed the anonymity that keeping hair throughout chemotherapy would have afforded a young mom with a baby and toddler.