skull caps

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.

@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 x

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.

The user and all related content has been deleted.

@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.