My first thought when the oncologist told me that I should get chemo:
My hair. My beautiful, long, straight hair. All gone.
I can’t recall how long I lived in this anxiety, because within a few minutes he had mentioned that there were ways to save my hair.
Save my hair. Save my beautiful, long, straight hair.
It’s called chemo caps, and it changed my whole outlook on my cancer treatment.
Chemotherapy targets rapidly dividing cells, such as cancer, but its cocktail also goes after your hair, creating hair loss that can range from baldness to complete loss of body hair, including eyelashes and eyebrows.
Chemo caps battle this by keeping your hair (and its cells) on ice.
Used primarily in Europe and Australia, chemo caps are literally frozen caps that you wear during and after your chemotherapy sessions. They cool down your scalp, constricting blood vessels that feed your hair follicles.
By constricting the blood vessels, it’s theorized, the chemicals given during chemo don’t have a chance to reach the follicle, thereby damaging it.
In the last few years, chemo caps are being used in the U.S. The technology on chemo caps ranges from MacGyver-like kits to FDA-approved automatic systems that are increasingly being offered at infusion centers.
I used a kit called Arctic Cold Caps, which works almost as well as the fancy devices. I kept about 60 percent of my hair, and it grew back more rapidly after I was done with treatment.
Using chemo caps gave me a sense of control over the side effects of chemo, and helped me avoid getting stared at as a “cancer patient.” Putting together my plan was my project to manage while doctors took care my health.
It also gave my friends and family — that my friend Dru nicknamed Team Follicle — the opportunity to do something substantial to help me.
Best of all, I was able to endure chemo without exhibiting most of the tell-tale signs — a gift as I continued working and living almost incognito.
I’ll take you through the steps of getting ready, offer some resources, and give you a few tips on getting the most out of your chemo cap.
Research and prep
The best website to learn more about chemo caps is The Rapunzel Project website. It’s a one-stop resource that compares cap systems, offers the latest medical news on systems, and shares personal stories of women who have used the caps.
While my oncologist brought up the idea of chemo caps, not all physicians endorse the idea. In fact, I needed to educate a few people on my healthcare team. It’s not recommended for anyone going through treatment for blood-related cancers. Chemo caps can be less effective on patients using certain chemotherapy treatments (such as Taxol).
Rapunzel neatly maps out what it takes to do this. There is so much misinformation out there. I searched on Amazon for chemo caps and found reviews that showed me women were not using their system properly.
It takes MULTIPLE CAPS to be worn during and at least three hours after treatment ends.
You must start using the caps with your initial treatment. Otherwise, you will lose your hair after the first treatment.
You can order a system to be delivered to your home. The kit usually includes a number of caps (made of gel-filled material that will keep cold for 20 minutes), a large cooler, safety gloves and pads to keep your skin around your face from getting frostbitten.
The key is to get the caps cooled down to 25-35 below zero, using dry ice pellets. Dry ice is increasingly available in grocery stores in blocks, but usually only a dry ice dealer will have pellets available. They are put in two-gallon zipped bags (also usually provided in your kit) and placed inside the cap.
They must be cooled down at least 12 hours before you begin your treatment. I usually got my pellets the afternoon before my treatment.
Dry ice blocks can be placed at the bottom of a cooler to further keep the temperature down.
A word about hair. I had mine cut to a bob prior to treatment. Other women keep their long hair. You are not supposed to wash your hair three days prior to treatment, and wait until three days after to wash it again. You will have many bad hair days. But it’s worth it.
The chemo cap process
Specifics vary, but the standard rule is to start wearing the caps at least 45 minutes prior to the administration of chemo. For the first part of my treatment, we put the first one on at home, then traveled the half-mile to the infusion center. There are instructions on how to measure the temperature (my kit came with a temperature gun). The cap, while cooled, only stays that way for about 20 minutes. Then you must change it out for another one.
That’s where Team Follicle came in. At least two people accompanied me to my chemo session, changing caps every 20 minutes and keeping the remaining caps cold. In a typical one-hour chemo, we changed caps at least five times. And we had to keep cold capping for four hours after treatment.
My dear friend Alicia was the yoda, showing others how to put the cap on, take it off and maintain the others. I wouldn’t have been able to do this without her.
The other person keeps track of what caps were used, since they need time to cool down. I had a set of eight caps; I would recommend that many be part of the routine. My Amazon search showed that women bought just one cold cap to use throughout their chemo. Just no.
Fortunately, I live close to my infusion center. If you don’t, you’ll have to change your cold cap along the way.
Keeping it tight
You know those “light day” pads used in between periods? I used one of these across my forehead and over my ears to prevent being frostbitten. Yes, I looked that silly.
The cap must be tightly placed on your scalp. That means a little tugging and pulling. Your team member must squish it to your head so the cold can reach as many hair follicles as it can.
How does it feel?
It’s very cold at first, but you get used to the temperature as you go along. Some women give up after the first treatment because they can’t take it. I have a higher tolerance for pain (and an affection for my hair!).
The cost for my system was about $370 a month, for about four months. My friends and family generously created a GoFundMe page to pay for the expenses.
Why you don’t have to do any of this but still save you hair
In the last two years, the FDA has approved two scalp cooling systems — Dignicap and Paxman — that work through a temperature controlled cap that you don’t have to keep changing out. But not all infusion centers have the systems available. Mine got the Dignicap system just as I was finishing up.
The cost is about $450 for each treatment, but it varies.
In between treatment hair care
You can’t color your hair, have it professionally styled or use a brush on your hair. My kit came with a wide-tooth comb to use.
Some hair will fall out. You won’t be able to get all the follicles. After about two treatments, I had a small handful of hair fall out. I continually thinned out, especially on top. But compare that to losing your hair in big chunks 10 days after your first treatment.
But, in the end, I still had more hair than Donald Trump!
Another perk of the cold caps: My hair began growing back much quicker. After four months, i have a full head of hair.
Click here to see the progression of my hair in a photo gallery on Cancer on the Clock’s Facebook page.