If you haven’t already read the Cold Capping 101 article, check it out first, then come back to this one.
I decided to make the major commitment to do Cold Capping, and for me, it was worth it. I kept 70% of my hair and had no visible bald spots. But, I’m going to be real: it is a lengthy, tedious, uncomfortable, expensive, and laborious process, not just on the day of chemo, but every day of your life during chemo and for a few months after. And, it doesn’t always work. If you’re not sure if capping is right for you, here is my experience to help give you a better picture.
My experience on treatment days
For a quick re-cap (cap? see what I did there?), on the day of your infusion, the cap will be placed on your head 30-60 minutes before treatment begins, and 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.
My first four rounds of chemotherapy were of the Taxol/Carboplatin cocktail. The first cap of the day went on an hour before the infusion began and was swapped out every 30 minutes from then on, continuing for four hours after the treatment ended. When I got switched to the A/C cocktail, the caps were swapped out every 20 minutes, and had to stay on for five hours after. So, it makes for long days – nine or 10 hours for me. But I can honestly say they did not seem long to me at all; I was so out of it from the Benadryl and Ativan given to me in my infusion and the cold of the caps that it was all a blur!
With regards to the discomfort, I already expected treatment not to be fun, so what was one more thing that sucked? To me, the worst part was right at the beginning when the cap was first placed on my head. It was heavy and so freezing it hurt. However, my head quickly became numb and I stopped feeling it, and I was able to find just the right position with my head weight leaning against the back of the chair with the proper placement of a pillow or two, including a travel neck pillow. I also covered myself with a cozy warm blanket. It's best to dress in layers on the day of your treatment. You can find great options in our chemo collection here.
Heads up that while I did not experience all of the following, the general possible side effects listed for both manual and automated methods are: headaches while wearing the caps, neck and shoulder discomfort, scalp pain, forehead pain, dizziness, and nausea. You may be able to take an OTC pain med beforehand to help with the possible aches and pains but check with your care team first.
By my last chemo session, everything was tired, everything was sensitive, and I did not want that helmet on my head. I yelled and cried to stop. My cold capper, Krystal, who will be my forever friend, reminded me gently but firmly – you have come this far. The nurse also kindly told me how often she saw this – that this was normal. For many using Cold Caps, by the last time or two, they felt the same as I did. She told me that some did opt to stop, and lost their hair. So I pulled through. I had come that far!
Also, side note, I will always remember the smell of the ice. It had almost a sweet aspect to it, and, full disclosure, I had some PTSD physical reactions when I opened my freezer or smelled anything frozen for a few months after treatment was done.
What to expect in between chemotherapy sessions
Expect that you will lose a lot of hair roughly 14-21 days after your first treatment – and not just simple shedding.
When it started raining hair for me, I was terrified. I called Krystal frantic because I thought the Cold Caps didn’t work. She reassured me that this was the hair the caps couldn’t cover, and this, while shocking, was normal. After that first downpour, I had shedding throughout the rest of my treatments, but never like that again. The top layer of my hair was enough to cover the missing underneath and side bits, and only the people who saw me often could tell it was thinner and flatter, so no one in the outside world would know.
For the best results, follow the maintenance protocol below as closely as possible.
The maintenance protocol is the same for both the automated and manual cooling systems during the course of your chemotherapy treatments and for the first months after, and can be a pain in the ass. It does get a bit complicated – you can see a full protocol list here – but in a nutshell:
- Use a sulfate-free gentle shampoo and detangler
- Use wide tooth comb and brush gently
- Avoid dyeing your hair for 3 months after chemotherapy is done
- Use blow dryer only on “cold” setting and on low or not at all
- Avoid hot rollers and straightening irons
- Avoid hats and wigs, tight hair accessories, and getting your head too warm or sweaty
- Avoid hair styling products
- Wash your hair no more than twice per week, in cool water, avoiding any pressure from the shower heads (I just washed mine in a bath)
- Avoid alcohol and caffeine
- Use a silk pillowcase to keep your head cool at night and reduce friction on the hair! Thank goodness for little luxuries.
Today, the hair that I did lose has grown in wavy, curly and unruly in random spots, and even seems to be thicker. It was stick-straight before! People do say that hair grows back differently after chemo, and I guess that’s true even if you use scalp cooling (at least, for me it was).
Would I do it again? Yes. In a heartbeat.
Having my hair helped my mental state, and I believe, was conducive to my healing. In the midst of it all, I was able to look in the mirror and still recognize the woman standing there. It gave me the tiniest feeling of control during a time when so much was out of my control.
When deciding if this is right for you, it’s really about having all the info, and then doing what feels best to you. I spent a lot of time shaming myself for my vanity; like, I was facing a life-or-death situation and I’m worried about my hair!? But it’s so much more than that. It’s about our identity. It’s our ability to have any sort of say over a situation that is so out of our control. For many moms I talked to, it was for their children’s emotional well-being.
You also need to take into account the possibility that it won’t work for you. Unfortunately that’s the case for our founder, Virginia. Like me, she used Penguin Cold Caps, but still lost her hair. I can’t imagine having to deal with that disappointment on top of all the other sh*t thrown our way during this time. (Yet one more reason why she’s such a badass.)
For me, it was worth the risk; I knew it was crucial to my mental and emotional health. And how each woman chooses to support those important aspects for herself during the stages of breast cancer looks different for everyone. There’s no universal right-or-wrong here; there’s only what’s true for you.