Five Rules for Using Cold Caps

Anyone who has done research on cold cap therapy knows it’s not a walk in...

By Kate Dilligan | 19/03/2019

My long curly hair after my 8th and final chemo infusion.

Anyone who has done research on cold cap therapy knows it’s not a walk in the park. Over the course of my 8 cycles of chemo, I wore cold caps for at least 64 hours, so I have some personal experience.

Cold caps are just that–cold. They are also currently very expensive and come with a fairly detailed compliance regimen. But I think cold caps are worth serious consideration for anyone facing hair loss from chemotherapy for a solid-state tumor.

I’ve talked to a lot of people facing chemotherapy. The common thread in their fear is dread of the unknown. Each person has a different severity and combination of side effects, but it’s made clear to every patient that beating back the tumor will be a difficult and painful process. I was terrified of nausea, loss of appetite, dizziness, bone pain, and potential peripheral neuropathy. I wanted to maintain as much normalcy as possible during treatment. It was my coping mechanism. If I could look in the mirror and see my regular self looking back at me, it would make facing down a potentially deadly disease easier.

I worked throughout chemotherapy. I sought to control who knew what about my health, and as I continued with my day-to-day life, I didn’t want conversations about my disease to sneak up on me when I was focused on something else.

Here are some of the most important things I learned about using cold caps successfully. I include links to the products I used where I think they will be helpful.

My hair is thin, but I have it!

ONE: Take care of your hair. One of my dearest friends used a scalp-cooling medical device  last summer. I tried to talk to her about how to manage her hair. But the nurse who administered the device didn’t talk to her about it, so she didn’t think it was important. She had a poor result and wound up shaving her head anyway. The steps below are advice I was given and followed. It worked for me. I followed these steps for about two months after I finished chemotherapy. Remember, the chemo is still circulating for several weeks following the last infusion.

This may seem like a lot, but trust me, it becomes a matter of habit.

Don’t cut your hair. Cutting your hair changes its weight, which stresses it. Don’t cut your hair within a week before starting chemo, and don’t cut it during chemo.

Don’t color your hair.  The advice is the same on this one. The chemicals and pulling involved in the coloring process can lead to hair loss. I used spray-on color for my roots.

Gently wash your hair with warm water. I like hot showers. Heat, however, is the enemy of hair preservation. I would take a hot shower avoiding my scalp, then, when I wanted to get my hair wet, turn the temperature to tepid and the stream to lower intensity. I used non-sulfate shampoo and conditioner and didn’t work the shampoo into my scalp. Conditioner I would just wipe gently onto my hair and then rinse out.

I washed my hair only 2 or 3 times a week, though I did get it wet every day to make it easier to manage.

Blot your hair dry. I normally make a towel turban on my head, but when I was going through chemo, I would tilt my head to the side and use the towel to blot my hair up against my scalp. Avoid rough toweling.

Gently brush your hair. I have a lifelong passion for horses. The rules for brushing a horse’s tail are the same as for brushing a toddler’s hair–and should be followed by people using cold caps. Brush your hair gently, starting at the ends and working your way up. To avoid pulling on the roots, hold your hair away from your head when you are brushing it. This short video shows what I mean.

Hair dryers, braids, and tight ponytails are out. Any styling tool or hairstyle that heats your scalp or pulls on your hair is out. I used scrunchies to pull my hair back into a low ponytail.

Avoid tight hats. Does it pull on your hair? If so, don’t wear it. I love baseball caps but put them aside for the duration of chemo.

Avoid all kinds of excess heat that can make you sweat. Going for runs is one of my favorite things to do. But I sweat a lot when I work out, so even though I went through chemo November through February, I opted for walks over runs.

Chemo did throw me into menopause for about a year, and I started to have brutal night sweats. I would wake up in the middle of the night to change my clothes. Especially bad was the sweat around my hairline. I wound up losing my hair just above my ears and at the very back of my hairline from night sweats.

A friend of mine who is an OBGYN recommended Effexor, a low-level antidepressant that has an off-label use of stopping hot flashes. I got it from my medical oncologist. That was the right decision for me, and I stopped using it about 6 months after chemo ended. I wish I had known about it earlier, as I think it would have saved the hair along my hairline.

Pools and the ocean are off limits. Salt or pool chemicals would be really hard on hair undergoing cold cap therapy. And anyone undergoing chemo should not be swimming anyway because of the likelihood of coming into contact with a pathogen that would be hard for a compromised immune system to fight off.

The weekend after my final round of chemo with my best friend who came to “chemo sit” me. I don’t have eyelashes, but I do have my hair.

TWO: Wash your hair on day 3 following chemo. This is when the chemo is coming through your skin, so it’s important to get it off your scalp. All the suggestions above apply to getting your hair clean.

THREE: Know your pain level. One of the people I spoke to about cold caps as I was doing my research recommended pain medication at the start of each chemo infusion. I asked my medical oncologist for a prescription and got one for Vicodin. I took one dose as I got to the office to have my labs drawn (mine were always done the day of) and another as I got to the infusion center.

Cold caps gave me the feeling of brain freeze for a few minutes. My scalp rapidly became numb. I always kept a coat and a blanket with me at the infusion center. It is cold, but it’s not that bad. I could joke, eat, and even nap while doing cold caps.

Chemo day is long and uncomfortable anyway. I viewed the extra time to do cold caps as well spent. And  it wasn’t like I wanted to go to the movies after my infusion.

FOUR: Hydrate, hydrate, hydrate. My first chemo infusion was AC (Adriamycin and Cyclophosphamide), which I was told is known as the “red devil.” It is unclear to me why that was deemed helpful information to tell me as I was getting ready for my first infusion. AC turns your urine red, and I was glad I’d been warned about that beforehand. Hydrating not only helps flush the chemo out but also aids digestion, which Zofran and the other anti-nausea meds mess with. During my four months of chemo, I had a goal of about 100 ounces of water a day.

FIVE: Use vitamins. I used silica and biotin to help my hair. It’s hard to know if they worked, but they were recommended to me and I used them.

These are the core steps I used to keep my hair during chemo. I probably lost 60% of my hair, but since it was even, I still felt normal.

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