skull caps
htav
Member Posts: 5 ✭
I'm interested to get people's view on the 'cold skull caps' which can be worn during chemo.
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@htav hello there. Are u going to be starting chemo soon??
If u put cold caps in the search bar you will find recent threads about the use of cold caps that are a wealth of information. Definitely a variation in people’s experiences - works for some and not for others and sort of worked for me.
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I used them for the first 2 AC treatments. Bloody freezing and made the treatment so much longer. However, I would have continued but the hair loss I got was a strip across the top from one ear to the other - no possible comb-over, there.0
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@htav Welcome to you. They are right there are many threads on cold caps. This one comes to mind..
http://onlinenetwork.bcna.org.au/discussion/15635/cold-caps/p2
It really depends on your Chemo regime if it will be successful or not, I've know people who have used them but to no success. My Oncologist warned against it as I had FEC (red devil) and with the hard hitting chemo it's generally not successful. Or quite a few abandon as did my friends as hair thinned too much they had to wear headwear anyway. M x0 -
Hi @htav,
Welcome to the forum. So much information, love and support on here.
I used the cold caps through 6 mths of AC and Paclitaxel treatment. It worked brilliantly for me and I did not follow the hair care rules very well.
The not so good things.
You are going to run into a fair bit of negativity regarding them though. I know I did and still do. There have been many people that have been told by their oncologists that they just don't work , its too cold and takes too long. I was told this by my first oncologist, so I got a new one!
Luckily my breast care nurse had worked in the UK for many years and pretty much all hospitals have them over there so she knew a lot about them and was quite surprised about the lack of both the machines and information in Australia.
There are varying results and a lot of factors that contribute to that. Hair type etc. The fit is the most important thing and the experience of the nurses fitting it varies from place to place. Do your own homework and make sure you are happy with the fit before they start.
i am more than happy to help with more details if you want to send me a private message. It's is pretty much the same as everything else on this roller coaster ride, nobody can tell you how you are going to react to either the cold cap, chemo, radiation or hormone therapy. You never know until you try it.
The cold
Yep, it's bugger me cold. I nearly tore it off the first time round but I was determined to give it my best shot.
For me, the awful bit of brain freeze at the start only lasted a few minutes, I never needed panadol, just a bit of a distraction at the beginning. It was fine after that and the discomfort actually got less and less as I went through each cycle until it was under a minute.
Time
Sure, it does add extra time but if you have an experienced nurse can be done in coordination with premeds etc I was only there for an extra hour or so on ac and about 45 minutes after taxol. Half the time they are running late anyway. I really didn't care about the extra time. I would have sat there for three hours more if I needed to. Your day is buggered any way
Stress
It does add an extra element of stress to the whole thing. You are committed and hopeful that this thing is going to work, so each strand of hair that falls out your thinking it's all going to go. It thins quite a bit as it keeps its normal shedding routine plus more but it was even all over and nobody but me could tell the difference.
To be perfectly honest I didn't care about any of the above. They could have dragged me through a field of broken glass if I thought it would be helpful. LOL
The good stuff.
You get to go out looking like you. Nobody knows what you are going through unless you tell them. For me, the best thing was the extra confidence it gave me to get through chemo and the anonymity if I wanted it.
If you want some more positive vibes have a look on the UK forum. There are a lot more people on there that use it and far more success stories with all types of chemo regimes.
It's your hair, it's your choice. If you have the opportunity to try it....go for it. Some people unfortunately don't even get the opportunity to try.
Was it worth it? ABSOLUTELY
My hair, last day of chemo.
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thanks Kiwi Angel, I start in a few weeks.0
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Thank you so much for going to so much trouble in responding to my post. It has been offered as an option for me.
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@htav. Good luck - what kind of chemo are u having?0
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Oh my god. I love this thread. Thank you ladies. I am embarrassed and feel very vain to say I am more upset about losing my hair than my breast. I love my hair. And everyone comments on how nice my hair is.
I will certainly be giving the cold cap a try xxx2 -
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Hair I have coped with - eyebrows, I haven't. I pencil them in every morning, no matter what, because I don't recognise myself at all without them.0
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@Melc503 You do what you need to do to be as happy as you can be.
I tried the cold cap in order to spare my niece & nephew the visual. It didn't work very well at all for me, despite most of the medical professionals saying they thought it would. After two chemo sessions I ended up with an incredibly wide stripdown the middle, big patches underneath what was remaining and hair falling out all over the house. The texture of what was holding on was dreadful. Manky, lifeless and kind of crunchy. At that point it was distressing me far more to deal with than if I'd had nothing so I went to a groovy hipster barber and had the rest removed. No tears shed and wow, showers were a whole new fantastic sensation.
I can send you a picture of what my hair looked like the morning of when I got rid of it. I found these images very confronting when I was researching online so I'll PM you only if you want to see it.
I coped with the cold cap OK after the first 12 minutes which were dreadful. Then it was difficult for 20 minutes and after that it was fine, just numb. I had to have it on for six hours (different chemos have different recommendations) and because it was quite heavy I was in a bed so I could rest my head on a pillow and be covered in a heated blanket.
Keep squashing the cap down on the top of your head so it freezes the hair there thoroughly. And be prepared for the icicles when the cap comes off! Good luck. K xox
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@Melc503 I felt exactly the same as u. U can hide the fact u r missing a breast but not your hair and then your private business becomes public.1
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Hi @Melc503,
I felt the same way. That's the impression my first oncologist gave me when I enquired about the cold cap. She had just rattled off what felt like a hundred possible side effects and I was worried about my hair. She said "I think your hair would be the least of your concerns when you are fighting caner" All well and good I guess, when its not your boobs or your hair and your just sitting there telling person after person the same thing.
Is it really vanity though? Well somewhat, but the thing I really did want was normal. I knew that it would give me strength, Even if I felt trashy on the inside at least I could look normal to the outside world. I did everything possible the whole way through to keep a sense of normality. So much happens and changes through this so any shred of the usual is valuable.
Not sure whether or not the cold cap helped but I never lost all of my eyebrows and there were enough lashes left that it was hardly noticeable with mascara on.
Let me know if you want any help.
Cheers
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Hi, @Melc503, @htav, and all. I'm going to attach a link to a podcast, where they're talking to someone from the main company that manufactures cold caps in the UK. I found it really interesting. I think it would be good to have the knowledge provided befor starting with the cold cap.I have got a lot from each episode in the series, actually.
https://www.bbc.co.uk/programmes/p0639d7n
If the link doesn't work, the podcast ist called youmebigc and the episode is called about the body.
There is also an episode about chemo.
I was actively discouraged from using a cold cap, and always felt that it was because the nurses didn't want the extra work/time it would take.
Don't feel that it's vanity. Our hair is a a huge part of our identity. I found losing my hair was one of the most emotionally draining components of my treatment1
