Cold capping, or how I learned to stop worrying and keep my hair

So, of all the things that have been going on with my treatment, the cold capping has gotten the most interest.  Many people have asked me if it’s new – it’s new-ish, I guess.  I know people use cold capping for breast cancer and ovarian cancer treatment, but I’m not sure about other types of cancer and their chemo regimens. I think the testing has been mostly on breast cancer patients. They’ve been doing it in Europe for quite a while, and there they actually have machines that plug into the wall and keep your head cold, which makes it a bit easier (the first of these machines, the Digni-cap, was recently approved by the FDA and should be in more American hospitals soon).

Why does freezing your head help keep your hair? I don’t really know, because I’m not a scientist.  I do know that chemo drugs focus on the fastest dividing cells in your body, because cancer cells divide quickly.  But so does your hair, your nails, your digestive cells, and others, causing the dreaded chemo side effects.  So I suppose the freezing of the hair follicles is to stop that quick dividing and put your hair in hibernation of sorts. I will say that my hair hasn’t seemed to grow much, if at all, during chemo. Here’s my hair before we started (and I am very glad I cut off 14 inches three weeks before chemo or it would be a mess right now):

For now, cold capping in the US is largely a do-it-yourself operation.  My oncologist originally told me she didn’t think it would work with my chemo regimen due to the tiger’s blood (Adriamycin), which is an especially hard drug and really hard on the hair, though she was happy for me to try.  I did a little research and found that cold capping companies did advertise that it was possible, though difficult, to keep your hair on the AC/T regimen I’d be following.  I spoke to two companies:  Penguin, which is probably the biggest, but I didn’t find to be very user friendly.  And then I found Chemo Cold Caps (CCC), which is based right here in Dallas!  They included not only the caps but everything you needed to do the capping – the cooler, the racks, the skin protection, a spray bottle for your hair, the infrared thermometer, even a clipboard with time sheets for each treatment – all of this was included in the rental price.  Penguin was going to be the same price for the caps only, we would have to go collect all the other items – and when you’re a week from starting chemo, you’re already overwhelmed without going on a scavenger hunt/shopping spree.  Plus, because CCC is local, we could go pick up the materials and save the shipping cost, and they would send out a capping specialist for free to come to my first session and show us how to wear and rotate the caps.  (They also send you a video, but honestly when I watched the video I didn’t think we’d ever be able to figure out how to do it.  Turns out when someone shows you, it’s really not that hard.  Just fussy and requires someone to be detail oriented.)

So I called CCC and asked them point blank if the cold capping would work with the AC/T. I knew it was only a maybe, but what did that mean?  She told me there was a 50% chance it would work, and that even if it worked I would lose 20-30% of my hair.  I asked, “how will we know if it’s not working?” and she said, “all your hair will fall out.”  So I got a wig as backup but decided the 50% chance was worth the shot.

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Here’s our huge cooler.  Bigly!

Here’s the thing – I’m not that vain; I’m also pretty lazy.  I don’t spend much time fixing my hair, if any, and I rarely wear makeup unless we’re going out.  But I’ve been with my friends when they’re bald from chemo.  People come up and talk to you about cancer.  People make assumptions about your health.  I didn’t want to walk into court bald (didn’t seem very badass to me) and I have no confidence that I can keep a wig on my head let alone keep it on straight. I know I can’t tie a scarf to save my life.  Plus, cancer takes a lot of control away from you.  If I could exert this little bit of control, I was going to do it. That’s the plus of cold capping.

Here’s the downside of cold capping – it’s expensive, it’s a lot of work, and it hurts.  It’s not covered by insurance (neither are wigs, usually) and the rental is $500 per month.  I have five months of chemo.  Plus Tony has to go pick up 80 pounds of dry ice the night before every chemo session, and I have 16 of those. Luckily Dallas Emergency Ice gives a discount so it’s only about $26, but still, that adds up.  The work part is on Tony and our helpers – the ice chest weighs over 100 pounds, so Tony ends up having to come to the hospital every time to get it in and out of the car (also, once we decided to do this, he was determined to make it work so he wanted to do as much as possible himself).  There are six caps and they have to be changed on my head and rotated every 15-25 minutes for up to seven hours total.  The pain part?  The caps are frozen to -35 below.  We wet my hair first, comb it straight back, then put on a shower cap (so the hair doesn’t stick to the hat), and forehead and ear protection.  Then the cap goes on, followed by one strap that goes around my head from the nape to the front, then a three-point strap that goes under my chin.  Over all of that goes the “jiffy pop hat” that insulates the cold.  And that first hat hurts, a lot.  Sometimes the second one too.  I finally started taking a pain pill before we go because a couple of times I actually cried when the first hat went on.  Some people give up on cold capping because it’s just too much with everything else happening with chemo.  Here’s the pictures of the actual process – from wetting hair and protecting my skin, to a picture of just the cap itself, to the jiffy pop hat shebang. (And yes, the nurses get a kick out of my “badass” Wonder Woman forehead protector.)

Overall? I’m happy we’re doing it.  I’ve included pictures so you can see that yes, I’ve lost a lot of hair. But I had a lot of hair to start with, and when this is over I’ll still have some while the rest of it grows back.  For us, it was definitely worth it and I’ll forever be thankful to my husband for everything he’s done to make this work for me.  As soon as he saw how important it was to me, he has moved heaven and earth for the last 12 weeks to make it happen (only 8 to go!).

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Pictures above:  My hair right now when it’s wet (I can’t believe I posted that, but I want to be honest about what success means with cold capping); my hair when it’s dry with nothing on it; my hair with a little shake of a miracle product called Toppik for thinning hair which covers up that part at the crown; and the front of my hair.  See – definitely thinner, but also definitely passable as normal hair.

If you want to see a little more about how the capping works, Tony made a short (2 minute) video which you can see on Youtube at https://youtu.be/tgCICU6MN_c  (Apologies that I can’t get that to insert as a link.  I’m pretty technologically inept.)

And now, I’m all caught up on where I am on my treatment!  Musings from here on out will be shorter but more timely, and will even include thoughts on my running (this is a running blog, isn’t it?)

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About Elizabeth

Running and thinking about life one step at a time.
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One Response to Cold capping, or how I learned to stop worrying and keep my hair

  1. C Turner says:

    Elizabeth, you are even more badass than I know! Thanks for chronicling your journey. You are amazing!

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