Hi Angela,
Isn’t it wonderful that the brave ladies here have shared their experience with us - - such a hard time having Cancer let alone losing our hair.
I just want to wish you all the best for the start of your treatment and I pray that the CC will help with the hair loss. It would be good to hear how things are going.
All the luck in the world,
Victoria x x
Featherbird, I didn’t use the cold cap, couldn’t be bothered, but when I went on one of the breast cancer care younger women’s forums after my diagnosis last year the question re scalp mets and the cold cap was asked. We were told that the jury was very much still out, there was no evidence yet to suggest there was an increased risk of this but no evidence yet to suggest there wasn’t, just because there’s no evidence doesn’t mean there isn’t a risk, and vice versa x
hi meemoo
I had my first FEC on 5th Jan and I’m going in on 25th Feb for my second. I gave the cold cap a try and found it no problem - it is cold but not so cold as to put me off using it. I’d like to keep my hair just so I can feel myself and not feel I need to tell everyone what I’m going through but if I lose my hair then I’m ready with a wardrobe of scarfs and hats ( and a wig!)
The worst part for me is tight chin strap but you can pull down on that every so often to stop the jaw ache. Most importantly at this point I haven’t lost my hair and I cant tell if I’m losing more or less hair than before when I brush it. My chemi nurse says it is 50/50 if it works so good luck if you go for it and I’ll let you know how my progress goes 
Hi Summer,
Thanks for your reply. I am so glad that it is working well for you. I too feel that losing my hair on top of everything else is too much to take. So I will be asking about the CC.
How is your treatment going - how are you feeling after the FEC? I have to young children to look after on my own and I’m worried how I will cope with the treatment.
All the luck in the world,
Victoria x
Hi Meemoo
I started FEC-Tx6 in October and opted to use the cold cap - they had just been given the Paxman machine and I was the first person to use it. I had my hair styled shorter a couple of weeks before the treatment started so I could get usefd to a new look. I lost some hair on the first treatment, quite a bit of hair from the top on the second treatment but that was because the cap wasn’t fitted tight enough. After that I lost very little, was never offered a wig and only bothered with a felted wool hat when going out in public on a cold day. The new hair is coming through quite quickly and evenly. The best tips I can offer are to use a really good leave-in conditioner and have a flask with a hot drink ready before you put the cap on. I found that keeping a mouthfull of hot liquid as the cap cooled down prevented me getting the sort of ice-cream headache caused by the impact of the cold on my sinuses.
Nonni
Hey Nonni,
Thanks for the advice - I am sooooooo glad that the CC worked well for you. And thanks for the tips - do you have to take you own conditioner in or do they give you special stuff to use when you are there?
I have heard a few people say that if it’s not on properly it does make a huge difference - I’m just going to keep on pulling it on tighter.
I think they use a ‘chemocap’ at the Bath RUH - I have only ever heard of the Paxman machine - hope the chemocap works as well.
I’ll certainly make sure I have a hot drink to hand.
Many many many thanks x x x
Hi again
Another good tip my chemo nurse said was to get a load of different ph neutral conditioners- I could not work out what was what ph wise so I just got a load from pound land?!? She said NEVER use the same one the whole way through or you will get a smell association with the chemo treatment which she says you don’t want apparently !
Meemoo- I have a 5 and7 year old and I’m trying to protect them from any worries so again why i would prefer to keep my hair if the CC works it would be easier. I did show them my sentinal lymph node scar and bruising and said i had a Sore booby but i was having medicine to get better.They are too young to understand any more than that.
I was lucky with my first Fec and didn’t feel too bad, just a little tired and I was fine doing the school runs but I have signed off work as I work with small children and my low immunity and their germs wouldn’t be good.
good luck with the treatment and fingers crossed the cold cap works for you- Anything that helps get through such a difficult time has to be worth a go!
Im back in tomorrow to have checks before second fec on Tuesday. I’ll let you know if my chemo nurse has any more advice as she is very pro CC - she did say the minute my hair starts to fall out heavily to shave it all off straight away!!
hi victoria
you too are a brave one you know. i don’t know how i would cope in your situation. it’s my prayer that you have a good support network that rises up around you, and from the most unexpected places. i wish you a smooth ride as you get to grips with all this. i think i’m going to opt out of cold cap and “embrace my baldness” when it comes. a nigerian friend from church has shown me how to tie a couple of styles with a scarf…hope i can do it as well as she can!
all you other ladies, i wish you all well too. keep on going 
Hello,
I used the cold cap and was really gratefulfor the opportunity.
I wrote about it on my blog with pics here: K is for… Keeping Hair – Cold Capping | Chemo For Beginners - an A to Z of all things "C"
I really hope it works for you too.
X
Hi, I cold capped through 6 FEC-Ts and kept pretty much all my hair 
Yes, some fell out, but most of it stayed in - I even got it cut during chemo to keep it in shape. I had a thinning patch at the top of my hair, but Alice bands, or clipping half my hair back kept it hidden. No one at work noticed, though I knew and I pointed it out to friends and family! I also washed it minimally, hnever blow dried it, used a silk pillow and cut it into a shortish bob before treatment. I used Naked shampoo and conditioner from Boots. From my experience, it’s most likely to thin on the top of your head where the cap has the worst fit, but keeping the front of your hair longer,means that you can cover up any thinning patches easily. Once chemo is over, the thinning patches fill in very quickly.
I hope it works for you.
P.S. Sandytoes, it looks like someone above already mentioned your blog
Hi, I am using the cold cap, nothing ventured nothing gained was my thinking. I have only had one fec (2nd one on tues 26th) and so far it is all still there although i know it is still early days to be too hopeful!
I have a question though about what type of conditioner to use when wearing the cold cap, i just took some simple conditioner last time and absolutely plastered my head in it, the nurses kept saying i had put plenty on, but i just kept adding more, lol. anyway i have heard leave in conditioner mentioned a few times, is this a better option than normal conditioner?
thanks ladies, and i wish everyone all the best on this adventure far too many of us are on xx
ps: i will be having 3 fec followed by 3 t
I used it once - but I was not told to get it cut first. I had ‘big’ thick curly hair, so I reckon it didn’t ‘get through’ to the scalp.
About half fell out after about 2 weeks, then more fell out as I went through the chemo. I ended up with about 20% left - not enough to go uncovered, but it made a useful wispy fringe.
I cut off all that was left at about chemo 4 - and now, chemo 6 + 8 weeks I have a very thick 1cm regrowth showing.
Hi ladies /meemoo
So I had fec number 2 yesterday and second time with cold cap -my chemo friend next to me and on the same cycle as me had given up as her hair was just pulling out so hadn’t worked for her but I persevered. Felt colder than first time but probably due to thinner hair but I thought at least it’s fitted properly;) pain went after first 20 minutes and the chemo felt much quicker and easier. Felt worse SEs from fec2 last night and was sick once but have been on school runs today and felt tired but able to carry on with being mum;)
My hair is still there- it is still coming out when brushing but I’ve stopped that and as yet no clumps out so it looks pretty normal.
Meemoo have you started yet? How’s it been?
Anyone else out there using cold cap still after fec2/3?
Keep strong ladies xx
Hi Summer
I had FEC2 yesterday as well with cold cap.
Hair has been shedding since i got home but i am hoping it slows down and lets me get to round 3 without needing wig/hats etc. we can only hope! xx
I completed 3 FEC and 3 tax on the cold cap and it worked really well for me. It did get colder the more chemo treatments I had, but my hair also started growing back after the FEC and filled in any thinning patches!
I know a few other girls who have gone through the cold cap successfully from the Younger Breast Cancer Network on Facebook. A really friendly group of girls with BC. Check out Search Results | Breast Cancer Now for more info.
Hi Aml46/swoot
Thanks Swoot for positive feedback I hope the cap continues to work for me it makes life more normal feeling for me and my little ones;)
Aml46- we are obviously on the same chemo timings so good to hear your progress - just washed my hair very gently and noticed more shedding but reading others experiences this seems normal and hoping it slows up but good news is no clumps out as that’s the point I’ll reach for thehusbands hair clippers;)
Now got my mind thinking fec3 is halfway point so if CC gets me there I’ll be chuffed.
Keep up the positivity;)
Maybe its a bit early for me to say but had FEC1 on the 12th February. Due for FEC2 on the 5th March (next Tuesday). My hair is find anyway but I have noticed no loss at the moment. Can’t do much with hair as have to use mild shampoo and conditioner and no hair products or dryer and straighteners as I usually use all.
Going to persevere with the CC.
Love and cuddles to all you great ladies
Jennifer
Hi all you fellow cold cappers
Thought I would l would let you know my story with the cold cap. I had 6 FEC and used the cc with them all. Like a few of you have mentioned I just wanted to keep some hair so I would feel better and bit more like me even though I had excepted that I would lose my hair. I bought my wig, scarves and hats so I was ready should it happen. My hair started shedding about 14 days after #1FEC and kept on shedding till my last. I only coped with this by wearing a hairnet all the time so that I didn’t have to look at the hairs everywhere. I probably lost about 70% but managed to hold on to a friar tuck look which when I wore hats I had hair showing. I dithered between the “shall I shave it and give up?” & “some hair is better than no hair” dilemas but as I didn’t suffer any pain with the cc I carried on and now i’m glad I did. I finished my chemo in December and although most of my hair went I now have a fairly thick 3cm (at the shortest) crop with longer bits maily at the back. I treated my hair very very gently only washing it once a week at the most and used a gentle shampoo. I used a wide toothed comb to comb my hair and left it untouched as much as possible. It has come back much greyer than I hoped but at least it is coming back. Hoe my story is of some use to you especially if you are thinking of stopping the cc. I believe that my hair has grown back quicker as the follicles weren’t damaged but unless I only cold capped half my head and left the other half we will never know. Good luck to you all and happy cc!!
Lol
Hi All.
I had my second set of chemo in 2011 (2 x Tax and 4 x FEC) and used the cold cap throughout. My hair did fall out and thin but I could wear a hat with some wispy bits and used my wig if I wanted to look a bit ‘posher’. I agree that it tends to thin more in the middle and top and leaves you with more around the edges.
For me it felt better than when I had Chemo back in 2004 and didn’t have the option of the cold cap. This time I had some hair during treatment and I think it definitely looked normal more quickly after chemo had finished. Everyone is different and copes in different ways so see how you get on.
You have to make sure it is on very tightly to get the best effect. I got used to the cold and even fell asleep. Chocolate and a nice big blanket helped!
Hope it works for you.
x
Hi lol/Jlh and Jennifer
Good to hear stories and get encouragement
Did you find the hair shed more the days after chemo and then slowed shedding rate as mine is the worst now 3 days after fec2 and I’m thinking at this rate its going to be gone by fec 3 !
Im then onto docetaxol x3 - is that worse or better for hair loss. Anyone know ?
Great support from you all x