How I Kept My Hair During Chemo: My Experience With A Cold Cap

Let’s face it, the last thing anyone with cancer should be worried about is losing their hair. We have much bigger fish to fry. But if you had the ability to control at least one of the nasty side effects from chemo, wouldn’t you consider the options? Here’s my experience with a cold cap.

I’m 45 and was diagnosed with stage 1B triple-negative breast cancer last November. I quickly learned that a dose-dense (every two weeks), 8-cycle chemo plan (4 AC treatments followed by 4 Taxol treatments) was in my near future. The long list of potential side effects from chemo, including hair loss, was daunting to say the least. My hair was long, blondish and fine, and I had lots of it. The thought of losing my hair and looking “sick” was awful. And I wanted things to be as normal as possible for my kids, twins aged 10, while I was going through treatment. I also didn’t want to have that awkward conversation about my cancer diagnosis with everyone. I appreciate my privacy.

I had heard of cold cap therapy from my surgeon at Princess Margaret Hospital, but after meeting with my oncologist, I was informed that it likely wouldn’t work for me because of my chemo regime. I was pretty much guaranteed to lose my hair, but was told if I wanted to give it a try, then ok. I investigated further.

There are a couple of options in Canada and I went with the Paxman scalp cooing system, which is a privately-owned company based out of the UK, with distribution in Canada. The company has no affiliation with OHIP or any of hospitals in Canada. (Although I think it should, but more on that later.) Unfortunately, it isn’t covered under any insurance plans either so I would be paying for this all out of pocket.

Scalp cooling is not a new thing; it has been used in Europe for many years. I’ve heard that it’s offered to all patients in the UK, thanks to charitable support. But cooling caps haven’t been approved for use in Canada for long (about 6 years) and were just FDA-approved in the US last year. They work by keeping your hair follicles chilled before, during, and after a chemo treatment. It’s literally a chilled cap that sits on your head and is plugged into a machine (the size of two bread boxes) that keeps the cap cool for hours. How long you pre-and post-cool depends on your chemo regime. And the cap detaches from the machine so you can get up to use the washroom.

When I enquired with the folks at Paxman, they told me I had about a 60% chance of success with my type of chemo. Success being that I wouldn’t lose so much hair that I would need to wear a wig. I was definitely going to lose hair, but how much hair was the question. There are some chemo regimes with much higher success rates than the one I was doing.

I was told the cost would be about $450 per treatment (including tax), a total of $3,600 for the eight treatments. And you pay by cycle, so if it’s not working for you, you can cancel at any time.

With all of this info in mind, I decided to give it a try, but I was cautiously optimistic with my outcome. I knew my chances weren’t great.

A representative from Paxman met me at the hospital about half an hour prior to each of my chemo treatments and helped fit the cap. I wore it throughout my treatment (about 2-4 hours) and then for about an hour after treatment. I had heard the cap could be uncomfortable and give the sensation of an ice-cream head freeze, but I had nothing of the sort. In fact, I was surprised it didn’t feel colder. It was completely tolerable.

Around day 21 after my first chemo treatment, I lost a lot of hair and I was sure it wasn’t working for me. I called the Paxman rep and was told that the day 21 mark is the worst for hair loss and that things would taper off. They were right. After that initial hair shed, I continued to lose hair throughout my 8 treatments, but I didn’t lose it all. I managed to keep enough so that I could wear it in certain ways so that it wasn’t noticeable, such as a top knot.

It’s been two months since I finished chemo, and what has fallen out is now growing back in. I was told that scalp cooling helps protect the follicles from damage so that when the hair does grow back, you don’t get that curly chemo hair that I’d heard of. My regrowth so far seems to be my normal hair but it’s early, so the jury is still out.

Am I glad I used the cold cap? Yes, absolutely. I think keeping my hair was beneficial for my mental health. I’m grateful I didn’t look sick throughout treatment and I was able to choose who to tell about my illness.

Would I recommend the cold cap to others? Yes. But I would caution you to speak to your oncologist first to see if it’s an option for you (as it’s not recommended for all cancer patients). The Paxman rep can also give you info. and let you know your chances of success based on your chemo protocol.

Should cold caps be offered to all patients? Yes. I’d like to see this offered to everyone, just like in the UK. Paxman has several hundred cooling machines being used in the UK. Currently in Canada, there are just seven. The fact that the cold cap isn’t covered by OHIP or insurance leaves this option out for a lot of people. It’s expensive. Yet I think the benefit can be huge for patients. Keeping your hair through treatment can have a positive impact on patients’ mental health. It did for mine. Rethink Contributor

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