Cold Caps

How Cold Caps Saved my Hair and my Attitude during Chemotherapy.

When I was first diagnosed with Ductal Carcinoma in Situ (DCIS), my first sigh of relief was that is was treatable and I’d be ok.  My second sigh came when I found out that what I had was NOT treated with chemotherapy.   Of course, a mastectomy and radiation was less than thrilling, but IT WASN’T CHEMO.  

Three weeks after my surgery, my doctor’s recommendation for chemo hit me like a ton of bricks.  After the mastectomy, pathology found a teeny tiny little tumor (6 mm) that they didn’t previously know was there. Then it became a whole new ballgame.  Even though the tumor had been surgically removed, we had to be aggressive in preventing recurrence. When my doctor told me they would be recommending taxol, the first question I asked was “will I lose my hair?”, which seems crazy.  I felt ashamed and didn’t want others to perceive me as being vain. Up until then, I had managed to keep my breast cancer to myself, now the world would see a bald head and know.  

Later that evening I read 2 things that changed my perspective. 1. In a recent study, 74% of women said that losing their hair was more emotionally difficult than surgically losing their breasts. After reading this, I immediately stopped beating myself up over my reaction and realized I was not alone. 2. I found out that it was POSSIBLE to keep my hair using cold caps. At first, I thought it MUST be too good to be true, but for the first time that day, I had a glimmer of hope and a feeling that I still had some control.

I learned that cold capping is quite common in England.  Cold caps are tightly fitted strap-on hats filled with a gel coolant that is chilled between -35 and -25 degrees Fahrenheit.  (Yes, you read that right!) When your scalp becomes that cold, the hair follicles contract allowing less chemo into the follicle.  

There are many cold cap companies here in the U.S. I chose Arctic Cold Caps because they were one of the least expensive, they had great reviews, and their package came with 8 caps instead of 4 or 6.  The cost was $379 initially and $379 a month for rental.  We paid the shipping and dry ice cost about $60 each treatment. 

I spent the next month preparing for chemo.  I ordered my caps.  Thankfully taxol, the chemo I would be taking, was a drug that had a high success rate with cold capping.  I started acupuncture, eating right, hydrating, and gathering everything I needed.  Some items were included with my caps, but every company is different. 

Items You Need

Shampoo– Use natural ph balanced shampoo.  I chose Sojourn Moisture Shampoo.

Wide tooth Comb– You can’t brush your hair, so you will use the wide toothed comb a few times a day to prevent tangles.

Leave-in Conditioner– I used Kenra Daily Provision Leave in Conditioner.  It kept tangles at bay and kept my hair soft.

Silk Scrunchies- I always had 80’s flashbacks when I wore my scrunchies!  But not just any scrunch will do. Rubber bands and any other hair ties that pull on your hair will pull it right out of your head.  Silk Scrunchies are best.  Believe me, you’ll be happy to be able to pull your hair back, especially during a hot Carolina summer or when you are shedding some serious strands and trying to cook.

Satin Pillowcase– It will allow your hair to slide across it and not be pulled when you move in your sleep. 

Reusable Gel Ice Packs and a Cooling Towel– Cold Heads= Good, Hot Sweaty Heads=BAD!!  I used ice packs a lot as my chemo took place over the summer.  The nape of my neck would sweat if I was out for a walk or at my kids’ sporting events.  I woke up in the morning a few times sweating. Hot flashes are pretty normal during chemotherapy.  I absolutely freaked out because my head was wet from the sweat. After the second time, I invested in a cooling pillow.  It had a layer of a cooling gel in it.  It helped.  I also slept with an oscillating fan blowing on me.   

Mittens, Scarf– Most doctor’s offices and hospitals are as cold as a meat locker anyway.  Now imagine sitting in this meat locker with a frozen hat on your head.  

Electric Blanket- I loved mine.  It kept me cozy and warm.  However, before you purchase one, make sure your infusion center will allow it.  Mine wouldn’t because it wasn’t approved to be plugged into their outlets.  We tried regular blankets the next time, but those were given a boot as well, as they may carry bed bugs.  Some infusion centers supply warm blankets, as they should, but mine did not so I wore layers and layers of clothes. 

Travel Pillow– The cold cap gets very heavy on your head. I used a travel neck pillow. It helped take stress off my neck to hold my head up! It also helped keep my neck warm-ish…

Heavy Duty Gloves- You must wear gloves to handle the frozen caps and dry ice or they will burn your hands.

Ziplock Freezer Bags- These make prepping the cooler so much easier. The caps go in 2-gallon bags and the ice pellets go in 1-gallon bags.

Getting the Caps Ready

My husband, Jeff, got Cold Capping Prep down to a science. It was amazing that he took care of the logistics and let me worry about everything else.

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My infusion center, like most, did not have a medical freezer specifically for cold caps, so we used the good ole beer cooler and dry ice method.  The afternoon before treatment, the hubby drove to Airgas, our local dry ice distributer.  He purchased two 10 pound slabs of dry ice and 40-50 pounds of dry ice pellets.  At home, he’d get the cooler ready for the next day.  The slabs laid at the bottom of the cooler.  Each cap was stored in a 2-gallon Ziplock Freezer bag.  He took the pellets and divided them up and filled eight 1 gallon ziplock bags. (One bag for each cap.) He placed the pellet filled bags inside each cap.  The rest of the pellets filled the space between the caps in the cooler.  The guys at Airgas knew exactly what we needed like cold-capping was something everyone did.  We found it very amusing that they knew so much about it and the nurses and staff at our infusion center looked at us like we were from Mars when we mentioned cold capping.  

Treatment Day

I followed the directions supplied by Arctic Cold Caps to the T.  I’m sure each cold cap company is different and I recommend you follow the instructions included with your caps.  I took pain medicine before I left the house to give it time to work it’s magic.  The infusion center can also give you Ativan to take the edge off as they begin your pre-drugs. If you are also getting Herceptin, ask your doctor if you can begin with the chemo therapy and do the Herceptin afterward. Herceptin does not cause hair loss.

My friend Julie came to each treatment to help the hubby and to sit with me.  One person can do the caps for you, but it’s nice to have another person too.  It’s less overwhelming for your caregiver.  My infusion center only allowed one person back with me at a time, but they made an exception during cap changes.  

With Arctic Cold Caps, you start wearing the caps 30 minutes prior to beginning the chemotherapy drugs. So it normally works out that you are wearing the caps during your pre-drug cocktail.  Before you can put on the first (or any) cap, it must warm up to -35 degrees.  Arctic Cold Caps sent a digital laser thermometer with my caps so we always knew the temperature of the caps.

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Before you start, you place 1/2 of panty liner on each ear with the rounded part of the liner at the top of your ear.  You cut a piece of moleskin to go on your forehead but make sure it doesn’t cover your hairline.  You don’t want the cold cap to come into contact with the skin on your ears or forehead.  They are too cold and could cause frost bite.    

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The first cap SUCKS.  I try not to use that word, but it hits the nail on the head in this case.  It’s a sharp stinging cold that gradually turns into a consistent cold headache.  The first 20 minutes is the worst.  Then you get another reprieve of suckiness when the third cap goes on.  After that, it’s completely bearable.  Uncomfortable, but bearable.   

Once the cap is in place, you put a swim cap on top.  Then you place the various straps on.  Mine had three.  Tight straps on your chin are quite uncomfortable. By the end of the day, your head is numb and you aren’t bothered by the cold, so the straps really step it up to aggravate you.  After a few sessions, hubby bought a football chin guard for me and it helped a lot.  

The first cap only stays on for 15 minutes.  After that, the caps stay on for 20 minutes.  Jeff took the caps out a few minutes early so they could “warm up”.  We took off the straps, then the swim cap.  Once we took off the gel cap, Jeff was ready to immediately put the next cap on.  Make sure you do not put the used cap back into the cooler to refreeze until your new cap is on.  

Remember to keep the time between caps as short as possible. Ensure the cap is tightly fitted everywhere. The cap must maintain good contact with your entire scalp or you could get bald spots. After the chemotherapy is complete, you must continue this process for 4 hours.  I chose a center that was 10 minutes from home, so we’d leave the center with a fresh cold cap on, and change it as soon as we walked through the door at home.  If your infusion center is farther than 20 minutes away, you will have to change your cap in the car.  

During treatment, I drank water like a BOSS! I feel this was the single most important thing I did during treatment to help the cold capping process and tolerating the chemo in general.  I drank 20 oz of water every 30 minutes during cold capping. I usually used the bathroom at each cap change.  

I’m sure you want to know how well the cold capping worked? I had 4 doses of taxol during a 12 week period.  I had very little shedding until chemo was complete.  Other than a receding hair line on my sides and 1 bald spot that can be hidden with my bangs, I have a full head of thick hair.  Before chemo, my little bald spot would have made me upset, but honestly it doesn’t even phase me.  I’m so thrilled with my results.  My doctors and nurses can’t believe it when they see me!  

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Tips for success

Only wash your hair once a week with your special pH balanced shampoo.  On chemo weeks, wash 3 days before and 3 days after.  

Do not brush your hair.  Comb it several times daily using your wide toothed comb and your leave-in conditioning spray.  Hold your hair at the roots as you comb down to the ends.  No pulling!

No Hair Products!

No hats, headbands, rubber bands or burettes.  Occasionally you can wear it back loosely with a silk scrunchy.

No heat!  (Blowdryers, straighteners or curling irons!)  It’s hard.  Believe me!  I normally blow mine out.  I have thick frizzy crazy curls that are unruly.  I looked like a lioness mess, but it’s all worth it in the end.