A Patient’s Take: Cold Caps to Prevent Hair Loss

About 650,000 people a year undergo chemotherapy in the United States and 65% of those individuals can expect to lose their hair.

Cold cap treatment was developed in Europe in the 1970s and has been proven to significantly reduce chemotherapy induced alopecia, or hair loss. The therapy involves a helmet that keeps the scalp at approximately 4 degrees Celsius before, during, and after chemotherapy infusions for a total of 3 ½ to 8 hours in total, depending on the kind of cold cap used and the kind of chemotherapy administered to the patient. By constricting, or freezing, the hair follicles, the potent chemotherapy drugs are not absorbed into the scalp. There are currently two FDA approved systems that can be used in infusion centers. and a variety of “over the counter” systems which, while not FDA approved, work largely in the same way.
Cold cap treatment works with varying degrees of success and requires very strict adherence to the process. It is also important to note that cold caps aren’t currently covered by many insurance plans and the cost to the patient can be thousands of dollars.

With so many requirements and no guarantee of success, is it worth it?

For me, the answer was unequivocally yes.

I was one of those statistics in 2016 and 2017 when I was diagnosed with breast cancer.  

Within the first minutes of meeting my medical oncologist, I learned I was going to get the full barrage of treatment - chemotherapy, surgery and radiation.
Chemotherapy struck fear in my heart - not only was I looking at months of feeling like garbage as the doctors put poison in my system to kill the tumor so it could not kill me, I was going to look sick. I would lose my hair, and with it, my identity as a customer facing leader at my company. I would look “other.” I would no longer look like me. Just the thought of losing my hair exacerbated the intense feeling that my life was spinning out of control.

Unfortunately, I did not hear about cold cap therapy from my clinical care team but from a friend who had attended my initial consult. I asked my nurse navigator about whether she knew anyone that had tried it. “We have had several patients do it with good results!” the nurse navigator exclaimed. The nurse navigator continued to explain about how expensive it is and that patients need someone to help them keep the caps to the right temperature and switch them out every 30 minutes for hours. I wasn’t deterred by the time and the cost – for me, I wanted to look as normal as possible.

Throughout my treatment, I learned the most from other patients who had used the cold cap therapy.
I learned that Vicodin makes the caps easier to tolerate and that my oncologist would give it to me.

I learned that you really need to have someone that knows what they are doing administer the caps for you if you don’t have access to the machines that are at some infusion centers.

I learned you should set an alarm on your phone so that you keep taking Zofran every 8 hours to stay ahead of the nausea, even if it is the middle of the night.

I learned to bring popsicles for my A/C treatment and they will be more enjoyable than ice chips.

Most importantly, I learned that I was not alone, as I had an outpouring of support from other people who had been through this treatment and generously shared their experiences with me to make my journey down this path easier.

Cold Cap therapy isn’t for everyone, but it worked well for me.

Cold Cap Therapy Quick Facts

Cold cap treatment works with varying degrees of success and requires strict adherence to the process.

  • Patients using cold caps will still lose some hair, and the texture of their hair will likely change
  • Cap must be started 30-60 minutes before chemo is administered, and be worn for 1.5 - 4 hours after treatment
  • Cap must be fitted tightly
  • Skin around hair needs to be protected from frostbite
  • Cap must be kept at the optimal temperature

On top of all this, a cold cap user must be extremely diligent about hair care during their treatment and for about two months after conclusion of treatment. Patients are advised to:

  • Wash their hair gently with sulfate free products and use lukewarm water
  • Refrain from getting sweaty as heat from other sources in the body, even in the time between treatments, can accelerate hair loss
  • Brush hair carefully and not stress it by pulling it back into tight styles like ponytails
  • Avoid cutting hair during treatment as that can stress the follicles
  • Stop any coloring or other beauty treatments during chemotherapy and for two months following treatment

Hair loss is personal, but we as a community need to let patients know that there are options to help prevent complete hair loss.  In the end, I was grateful I could look in the mirror and see myself every day.

Kate Dilligan is a breast cancer survivor who completed active treatment in 2017. She has devoted herself to making cold cap treatment an affordable and easy to use option for chemotherapy patients faced with hair loss. She earned her BA from Smith College and her MBA from Stanford. She lives in San Diego.

  • July 24, 2018