After I processed the fact that I would need chemotherapy (well, processed as much as I could, because how do you really process that?), one of my first thoughts was, “Oh my God. I’m going to lose my hair.” Losing one’s hair is often the hardest part of treatment for women. There is so much around hair — our femininity, our identity, how we view our attractiveness, and the fear that when we go out in the world, everyone will see our bald heads and know we are cancer patients.
Eventually I accepted that I would lose my hair, and surrendered to it like I was surrendering to everything about treatment. I was like, OK. I will do whatever I have to in order to survive; if that means losing my hair, fine. But then I heard about something called Scalp Cooling through a friend of a friend who had recently gone through breast cancer and miraculously kept a good amount of her hair. I looked into it and did the research; women who used Cold Caps, a method of Scalp Cooling, generally kept up to 50-70% of their hair! Who knew!?
I did a lot of digging to decide if it was the right route for me to take (spoiler: I decided it was, and I kept 70% of my hair. I cover my experience in this post. Here’s an overview of what I found helpful, which I wanted to pass on to you.
What is Scalp Cooling?
Scalp Cooling has been used in Europe for over 25 years to reduce the loss of hair caused by chemotherapy, and has two methods: manual (generally referred to as Cold Caps) and automated. Both are tightly fitting caps with a cold gel or liquid inside that you wear for a certain amount of time before, during, and after each chemotherapy session. These caps work by freezing the hair follicles (constricting the blood vessels beneath the skin of the scalp), thereby decreasing the amount of drug that gets to it, essentially putting the follicles to sleep, and temporarily limiting their metabolic activity – so hair is less likely to fall out.
There isn’t one definitive answer I could find about the temperature of the caps, but the general consensus is that they are cooled to a temperature ranging from -15 to -40 degrees Fahrenheit. Yeah. Cold AF.
Penguin, one manufacturer of Cold Caps, did research showing that when using their method correctly, 80% of patients saved more than 50% of their hair. And, in addition to high success rates with taxane-based drugs (like Taxol and Taxotere) it may be as high as 60–80% with patients using AC (Adriamycin/Cytoxan), which is usually toughest on the hair. Research also shows that around 60% of women who used automated scalp cooling systems lost less than 50% of their hair, although this is based mostly on taxane-drug results. In rare cases, women who received Taxotere have experienced persistent alopecia, defined as total or incomplete hair regrowth six months following chemotherapy completion; however, cold capping can reduce or eliminate the chance of that happening completely.
In a study focused on the prevention of persistent alopecia following treatment with Taxotere by using scalp cooling, it was shown that without cooling caps patients had a significantly higher chance of Grade 1 or Grade 2 persistent alopecia. Grade 1 is characterized by the weakening of hair or partial alopecia, but not leading to the use of a wig, after at least 18 months from the end of adjuvant chemotherapy, and Grade 2 is characterized as complete alopecia requiring a wig after at least 18 months post chemotherapy.
The study found that with the use of cooling caps, no Grade 2 persistent alopecia occurred in patients that were followed up to 8 years later; it was completely prevented with scalp cooling!
As always, consult your doctor when considering scalp cooling. If it is something you are interested in, you will need to bring it up to them. Once I told my oncologist I was considering it, she shared her insight on the results she had seen from differing systems. Based on that, in addition to speaking with people and doing my own research, I opted for Penguin Cold Caps.
It also made me relieved to know she didn’t feel that the Cold Caps would in any way hinder my treatment or the ability for the chemo to do what it needed to do.
Cold Caps: The Process
My experience is with the Penguin Cold Caps brand, so I am not able to speak personally to the automated method.
A Cold Cap is basically a huge ice pack helmet strapped on to your head – I read that it only weighs three or four pounds, but I could have sworn it was 10! They are rented privately by patients, and need to be stored in the proper temperature. In order to maintain the right level of cold to do its job, the caps have to be swapped and reapplied every 20-30 minutes during treatment, so you will need a few cold caps.
Many treatment centers have biomedical freezers where they can be shipped and stored (ask your care team, or check out this list), but if it doesn’t, the process of storing and carting your caps is a pain. You’ll need to get a cooler and fill it with dry ice to store the group of caps and then bring to the treatment center. This all needs to be discussed and coordinated with your treatment center in advance, including permission to stay at the center for the four or five hours after treatment per the cold cap protocol, and scheduling your chemo for the early morning, so you don’t get kicked out before you’re finished.
What happens the day of chemotherapy infusion?
Heads up: The timing of capping depends on the chemotherapy drug you are on, and makes for nine- or 10-hour days.
On the day of your infusion, the cap will be placed on your head 30-60 minutes before treatment begins, and as mentioned, will be swapped out with a new one and reapplied every 20-30 minutes for the duration and then for an amount of time after. Depending on the drug you’re getting (ex: taxane-based, platinum-based, A/C, etc.), that time is usually four to five hours.
Someone needs to be there, and trained, to take off and re-apply your caps. Often, a friend or family member who has learned through video does it, but there are also professional “cappers” trained by the manufacturer. It is an extra expense, but to me, it was worth it. If I was already going to spend the extra time and money to do this, I wanted to make sure it was done right. Also, for myself and other women I talked to, we didn’t want to put that stress on anyone; because if they messed up, they would have felt terrible! In fact, my capper Krystal became a crucial part of my cancer journey, with her encouragement, patience, love, and support. She checked in with me between sessions, and we are still in touch to this day. Also, statistically and anecdotally, the greatest success and efficacy of cold capping increases when used with a professional capper.
There are a few manufacturers that make Cold Caps in addition to Penguin (like Arctic Cold Caps), each with their own unique design and/or gel. Many of them have videos on their sites or YouTube showing how the capping works.
While I was a true Penguin Cold Cap success story, keeping 70% of my hair with no visible bald spots, Stage’s founder, Virginia, did not have the same experience. Unfortunately, the caps were not effective for her. But she stuck with the capping through all four of her chemo sessions and her hair grew back thicker and stronger than ever!
Potential Risks and Side Effects
The common side effects of Cold Caps, which may include headaches, dizziness, or nausea, usually only last while being worn until slightly after. Because you are essentially wearing an igloo on your head, there is the potential for chills and numbness, and because of the cap’s weight, you may experience neck or shoulder pain. Bringing a warm, cozy blanket to wrap around you and a travel neck pillow to take some of the pressure off those areas can help. There is also the potential for scalp or forehead irritation after or in between sessions; if that occurs, we have plenty of soothing products to help ease discomfort.
The good news is research has shown there are no long-term risks associated with scalp cooling. I’d also offer that if your oncologist was concerned about this, he or she would let you know and suggest not using Cold Caps.
Automated Scalp Cooling Systems
Automated Scalp Cooling Systems work the same way as the Cold Caps. But with them, the cap placed on your head is attached to a small refrigeration machine that is controlled by a computer circulating the cold liquid throughout the cap during the chemotherapy session. Because of that, this type of cap does not need to be changed like the cold caps do. Two of these systems have been cleared by the FDA: DigniCap in 2015, and Paxman in 2017.
One advantage to these systems — apart from not having to be changed or needing to cart around a cooler filled with dry ice — is that some insurance companies are starting to cover it, and many treatment centers already have these systems in place. However, through speaking to people personally and reading about the results in online groups, it does seem that the automated capping tends to be more hit and miss than Cold Caps; personally, I heard more instances of bald spots while using these systems than I did with the Cold Caps.
I’m going to be real – it isn’t cheap. Both methods can cost thousands of dollars. That was out of range for me (as for many), but my amazing friends set up a GoFundMe to cover the cost. The good news is many of the scalp cooling companies offer different levels of pricing and options, and there are a few organizations that offer financial aid (scroll down to the bottom of the page). Insurance is also starting to cover scalp cooling; you can find more about that here.For further info on all things Cold Capping and Scalp Cooling, visit The Rapunzel Project. I’ve found them to be the best source out there!