Cold Caps: HI. Has anyone tried using... - SHARE Metastatic ...

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Cold Caps

ALYogaGirl profile image
12 Replies

HI. Has anyone tried using the cold caps to reduce hair loss with chemo?

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ALYogaGirl profile image
ALYogaGirl
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12 Replies

I have never had chemo but when I thought I was going to (before I was diagnosed as stage iv), I googled forum boards for cold caps. You get alot of information from women who have tried. If I remember correctly, some women stated it was hard to keep them on because their head was freezing, other said it did not make much of a difference. I do remember reading though that women who last their hair when it grew back, it was different than before. If they had straight hair, their hair now grew in curly and vice-versa.

So if nobody answers here, that may be an option to google chemo cold caps forum boards and read some of the other women who tried using them.

Lolli2020 profile image
Lolli2020

A friend of mine did. It was very tedious, painful and not as effective as hoped. She finally gave it up and let her hair go. Hopefully you’ll hear from others who’ve had first hand experience.

I personally just let it go, embraced being bald and enjoyed having it grow back in. It grew back in curly and is still quite wavy when wet now. I always had long straight hair!

lynnhbtb profile image
lynnhbtb

Yes, I’ve been using penguin cold caps for 17 months of Taxane chemotherapy. I still have my hair. It has thinned, some and gets frizzy, but I have hair and don’t look like a cancer patient! It is growing but very slowly. I’m a fan.

They are cold, but honestly it’s very manageable. The big thing is you have to have someone who will put them on for you and be responsible. I also have to get dry ice each treatment week. It’s kind of work, but I think it’s worth it.

I was bald before 8 hrs ago when I first had chemotherapy and didn’t want to go down that path again since I knew this treatment was going to last a much longer time.

ALYogaGirl profile image
ALYogaGirl in reply to lynnhbtb

Thanks for the info. Are you a MBC patient? I think on of my oncs doen't like it for MBC patients.

lynnhbtb profile image
lynnhbtb in reply to ALYogaGirl

Yep. Been MBC since original diagnosis in 2012.

in reply to lynnhbtb

That is amazing. 8 years with MBC. I don't know why the American Cancer Society statistics say 22% of people make it past five years when all these boards show women (and some men) way past five years. Congrats!

lynnhbtb profile image
lynnhbtb in reply to

THanks. We're not numbers is my view. :-)

Kiera49 profile image
Kiera49

I didnt use cold cap and lost all my hair but it wasnt that bad and didnt lose it till my third chemo session. My onc said further down the line I will have to have chemo again. Wish you all the best

Arisgram profile image
Arisgram

I have a friend who used one last year. Sh we said it was a lot of work and very expensive. She lost her hair anyway.

I'm sorry you're facing this.

Andi

Arisgram profile image
Arisgram

I should have mentioned a few other things. I use LOTS of eyelash/eyebrow serum (Lavish Lash on Amazon). The serum reversed the loss from Ibrance. Makes me a little itchy, but no eyelashes and eyebrows is actually harder to manage than hair.

I also bought an LED light helmet to address the thinning. I use an essential oil ACV concoction on my head. The thinning has slowed dramatically. It may just be the side effects tapering off...but whatever...I will keep it up. I also use a hair thinning shampoo from Amazon. Good luck.

I used it in 2015 when I had stage 3 recurrence. It’s super cold and a hassle but it definitely worked. A little thinning at temples. My hair wasn’t as luxuriant and it felt dry but it remained where it was supposed to be!

Julie2233 profile image
Julie2233

I’ve just had my 3rd cycle of cabazitaxel, one of the side effects is hair loss and I was offered the cold cap. I lost my hair in 2016 with treatment for primary bc. I considered it and decided not to use the cold cap though I wasn’t thrilled at the thought of using my hair again. But I decided that actually having the chemo would be traumatic enough without having to deal with the discomfort of a cold head and all the pfaff.

So far so good. I still have my hair though I do have a sore scalp. I’m not expecting to keep it but I have 7 different wigs in the cupboard and had quite a bit of fun with them last time. I’m also using a caffeine shampoo and i’m wondering if that makes a difference. Though don’t know why it would.

After losing it last time my hair came back completely different. For the first time ever I had strong thick hair, and its a dark granite grey and white instead of mouse. My hairdresser is still commenting on it. 😊

Sorry probably not much help.

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