My Cold Capping & Hair Loss Experience

Cancer & Baldness

You might be wondering why chemotherapy causes hair loss. Chemotherapy drugs are designed to kill off rapidly dividing cells in the body (cancer cells). Unfortunately, it’s also effective at killing other rapidly dividing cells in the body like intestinal cells, red and white blood cells, and - you guessed it - hair follicles. That’s why the typical chemo patient is bald, and that’s also why chemo has unpleasant side effects (like GI issues, anemia, and immunosuppression).

What is cold capping?

Me modeling my trendy new cap

You don’t have to lose all of your hair when undergoing chemotherapy, and that’s because of this nifty new process called cold capping. Cold capping is exactly what it sounds like: a frozen cap that you strap tightly onto your head. It is kept at frozen temperatures for the entire time that you are receiving a chemotherapy infusion so that it can lower blood flow to your scalp. The less blood carrying chemo to your scalp, the less likely your hair will fall out. While it doesn’t completely prevent hair loss, it will usually help you keep 50% or more of your hair (unfortunately for me, this wasn’t the case).

Sounds great, right? But it’s far from perfect.

First off, it’s expensive. Like, really, really expensive. It costs thousands of dollars and insurance typically won’t cover it. It also adds 2 to 3 hours onto an already long infusion day, because you need to keep the cap on for 30 minutes before and 2 to 3 hours after you’ve finished your chemo infusion. So you’re sitting with an ice-cold cap on your head for what could be 6 or 7 hours.

Also, it comes with a ton of upkeep rules that 100% affect your mental health when you’re already going through a horrific experience. You can’t put heat to the hair, you can’t pull on it (so buns and normal ponytails are not recommended, and brushing is a no-go), you can only wash once or twice a week, and you have to greatly limit product usage. So it’s easy to feel like you look terrible.

And then the final kicker is: there’s no promise it will work. There’s no way to know if you’re going to be one of the people who keep 90% of their hair, or the people who lose 90%. And you’ll still watch your hair fall out in large swaths either way, which is traumatic in itself.

Essentially, cold capping is a gamble. You’re throwing your money away and tossing the dice, just hoping and praying it works. But if it does, it’s worth it.

My Cold Capping & Hair Loss Story

My very first question after being told I would need chemo was, “Am I going to lose all my hair?” I haven’t talked too much about this on the blog, but hair loss has been one of the hardest - if not the hardest - parts of cancer treatment for me.

Growing up, I had big, poofy, Hermione-esque curly hair. In high school, I started chemically straightening it. I recently stopped doing that, and I was slowly watching my curls come back when I was diagnosed and I was thrilled. I was so excited to see my curls, to learn what products did and didn’t work for me, and I felt beautiful. I felt confident. I didn’t realize how huge this had been for my self-perception until I lost control over it.

When I was diagnosed, I was put on Taxotere and Carboplatin chemotherapy drugs. While both of these cause hair loss, Taxotere has a nasty (but low) chance of causing permanent hair loss. Typically hair will grow back when you’re done with chemo. It can take months, but it comes back. Unfortunately, there have been people on Taxotere who ended up permanently bald because of it. My oncologist said cold capping could prevent permanent hair loss. With that in mind, I was far more inclined to cap.

I spoke with a few other people to see what they did. I knew one person who capped for a few treatments but decided it wasn’t worth it and it gave them migraines, so they stopped despite being on Taxotere. Another person capped and said it was the best decision they ever made. I had no clue what to expect, I just knew I was afraid of permanent hair loss.

The capping itself was not so bad - I lucked out in that I never had any migraines from it. It is excruciating for the first 15 minutes or so. You can’t even think or hold a conversation well because your head is so cold. I remember oftentimes just breaking off midsentence while talking with my mom or a nurse and just saying “Fuck. This is. So. Cold.” But after the 15-minute mark, your head goes numb. I would sometimes try to feel the cap with my hands to make sure it was still cold because my head couldn’t feel anything.

This was my hair after my 5th cycle out of 6.

It was when the shedding started that I knew I was in for quite the journey. For 6 months, I could not touch my head without hair coming out. I would lose fistfuls a day. Showers started to give me anxiety attacks because I knew I was going to lose so much more hair as I shampooed and conditioned. I watched as bald spots started forming. Watched them get too big for me to cover up, and then too big for me to even stand to look at them. I wore a hat everywhere I went, even in my room alone just in case I glanced at my reflection in the mirror. There were points around cycles 5 and 6 where one glance at my reflection would have me in tears. Every time. To put it mildly, it was awful.

The one thing I am incredibly grateful to the cold caps for is that I could put on a hat and look like nothing was wrong with me. Waiters, friends of friends, store clerks - none of them would know I had cancer if I didn’t tell them. I don’t know how it would have felt to go completely bald - to look in the mirror and have no escape (like my hat) from the reality of what was happening.

All I can say is my own experience. And it was a difficult one, one that had me wondering every day if it was worth it to continue. I sometimes thought I’d rather just be bald forever than go through this slow-motion shed that had me looking like the Crypt Keeper. Ultimately, I rode it out, and I’m glad that I did. I kept what I think was about 10 to 15% of my hair, mainly in the front of my scalp. But if I ever have to do chemotherapy again, I would very much like to avoid the cold caps.

I’ve been documenting my regrowth on my phone, hoping I can get enough length and coverage to cut it all into a pixie cut. I’m hoping it will almost look like I cut my hair on purpose, and not because I had no choice. Right now I have lots of little tufts all over, so I’m still wearing a hat until I’m ready for the big cut. It’s not a look I had ever been tempted to try in the past, so I’m nervous, but I know when I no longer feel like I need a head covering I’ll feel a weight lift off me.

If you have any more questions about cold capping or hair loss, don’t hesitate to reach out and ask. It’s important to remember that peoples’ experiences can vary widely, so there are plenty of people out there who cap and keep almost all of their hair. You’ll never know until you try it.