.
Oooh. Thanks xxwelcomex and Linda999. I hope I have as much of a success as you both…
What shampoo/conditioner did you use? I’m using Simple at the moment - but if you have any advice about that, I would love to hear it!! 
x
I have done and am doing all that you did xwelcomex, and been in touch with paxman too … but still my hair is shedding after the 2nd cold cap … it doesn’t work for everyone but is well worth a try . I’m not totally bald yet and may have it again for no 3 but I only wash once a week, keep it in a bandana or wig, and never ever brush it! Just unlucky I guess. It comes out in handfuls … literally and is so fragile and dry … I hate it!
Sandy - they sell Naked shampoo and conditioner in larger branches of Boots - it’s 97/98% natural - so virtually no chemicals in it. It is really, really kind to hair. It left mine feeling really well when I used scalp cooling and I was even able to dry it carefully using cool hairdryer etc with no ill-effect.
I had to give the scalp cooling up due to uncontrollable shivering even with 3 blankets and 3 hot packs and also the headaches. I have FMS and no tolerance to cold at all and I also wear gloves out of doors for most of the year and TBH I just could not face another sesh of it.
Hi Sandytoes
I feel almost guilty saying this, but I have continued to use my normal pantene shampoo and conditioner - I think I’ve just been incredibly lucky so far.
Its weird really as I have no growth of hair on my legs/underarms and down below (most of which has fallen out).
So good luck and make sure its on tight, especially at the top.
As for keeping warm - I wear my husbands long johns under my jeans and two pairs of socks (very fetching)
Linda
xx
Thanks!!
And, just one more question for those of you for whom it’s been a success, when did you have the majority of your hair loss? Did you have a big moulting session 2/3 weeks after your first chemo, or was it just a slow process (ie if half of our hair suddenly makes a run for it, does that mean it hasn’t worked, or do we still persevere.
Bring on the free Hollywood and full leg wax!!
xx
Hi Sandytoes, i used baby shampoo throughout cold cap and as i have said before i am thrilled with the results, in fact i am going for my first haircut on Saturday 3 weeks after my last chemo!
Most definitely i lost the most hair 2/3 weeks after 1st chemo i was on verge of giving up but my chemo nurse (my hospital very very pro cold cap) said lets just leave it on an extra hour at end of chemo and see what happens , so i had it on for 3 hours after chemo had been administered and it worked. Juat make sure that
1…They make your hair really really wet
2…They apply lots of conditioner
3…You have the cap as tight as you can bear.
I wish you lots of luck, i just want it to be as successful for the rest of you as it was for me.
Sal
I agree with you Sal. I had one session (number 3) where a different nurse didn’t really know how to get the sap on tight and couldn’t find my colour i.e. the right size with the result that I had a bubble which resulted in me loosing the hair on my crown. I found Naked products unbearably perfumed, even the nurses said it smelled toxic! I ended up using Boots unperformed sensitive products. Sadly I lost so much hair I gave up after chemo 4 but good luck to everyone who preserves with it, I’m now sporting a silver fox crop which annoyingly people say makes me look younger!!
Hey Lopylou!
Do you think that was a result of the dose dense chemo that you had (and I’m on?) or because the hat wasn’t fitted properly that time?
I’m giving it a bash anyway, but my onc said it wouldn’t work because of the chemo I’m on and I called Paxman to ask them and they called a few hopsitals who said they didn’t have any record of whether or not it workede for the dose dense regime…
x
Hiya Sandytoes. There was only one other lady on dose dense where I was treated. In fairness to her she stuck it out for 8 doses. Her hair thinned to a point at the end where she wore a wig. I kept some hair until the end of the fourth which meant over winter I wore hats and berets. I was very conscious of how much I lost on the crown and wouldn’t have felt confident taking my hat off in a shop etc. I’m glad I tried the cold cap as I kept some normality during a traumatic time. My hair had been coloured for years and even though I stopped using straighteners, the hairdryer etc I found that chemo made it quite straw like. When I did wash it gently it used to get very matted and I used a tangle comb to try and unknot it. You’ve got nothing to lose by trying it. Make sure to put conditioner through your hair before and get the tightest fit you can stand. I did notice that on one occasion when two of us were plugged into the machine the temp increased. No one knew why that was but it certainly wasn’t as cold as when I was on it alone. One lady swore that rubbing tiger balm on her forehead stopped the cold headaches! I found as my hair got thinner so the coldness got more uncomfy! Good luck! X
Lost even more today … putting the wig on … a whole big handful came out … I am almost bald on top of my head, have hair at the back and side and a part fringe. Its weird … had a hairdresser look at it today and when she touched it, another mass fell out! I now wear my wig most of the time or a bandana or scarf … going to the gym tomorrow so that’s gonna be the bandana! I’ve met lots of ladies who have had great success with the cold cap … guess I’m not one of those…
Oh Angielav, how frustrating. But worth a go! It does seem like a very mixed bag on this forum in terms of the success. I’m going to persevere for the moment and will let everyone know how it goes…
Thankyou so much everyone for all the comments-i had my first FEC on 6/6 and even though I tried the cold cap and have only washed my hair twice it started falling out today-not loads admittedly (8-10strands at a time)but is this the beginning of the end?I have got a wig on order but had to go for a totally different colour as they couldn’t match the silver fox look i have at the moment:)sorry for asking-am not vain or anything but when asked to identify me most people start by describing my hair colour and I am beginning to feel i am losing my own identity a bit.Any support would be welcome-thanks
Any advice on tenderness of scalp? Have had 3 x EC and due 4th next week. Having cold cap and had very little hair loss till last thursday when I got tenderness of scalp and now whenever I touch my head/hair more falls out. Scalp is tender on top and a bit itcy - maybe loose hairs? Anyone got any ideas to help - is the hair loss rate going to get faster now, or maybe that’s an unanswerable question, and there are lots of different experiences
I’m not sure if this will help or not… I gave up the cold cap after the beginning of my third cycle of FEC. Just wasn’t in the right frame or mind for it and I gave it 15 minutes, after which it usually get bearable but it didn’t. However, my hair as most people have reported started falling out, just a little after the first go but then nothing much after that. What is strange now is that I have now had 2 more cycles of FEC without the cold cap and I still have my hair…it comes out if i run my hands through it but only in strands, not that I am complaining, don’t get me wrong. I just wondered if anyone else had had a similar experience.
Clare x
I have been told that if you lose alot of hair, then the nurses won’t allow you to use the cold cap as it would cause ‘freezer burn’ on your head … anyone got any info on this … ??
Heaps and heaps of hair loss today … day 13 post EC2 using cold cap … strangely enough seem to still have fringe, sides and bit at back that pokes out of hats … but everything else has all but gone … What shall I do ? Continue with the cold cap, or not bother and get it shaved off ?? I’ve lost all power of making decisions now!
Ha! Oh, Angielav, hopefully someone with experience can help you with your decision - I’m useless enough at making my own decisions! What a shame you didn’t have the same success as some of the ladies on here.
I’ve just reached 13 days post AC1 so am gearing up for the loss to start. My scalp feels a bit sore. Is that the beginning sign? Have been practicing in the mirror with my wig hair net to see what I’ll look like bald. Not great!! My best friend made me giggle. She says she’s going to buy me a handful of skin-coloured swimming hats which I should make any visitors wear so I don’t feel uncomfortable or different!!
Mumof3girls - I think there’ll be some hairloss regardless. Read Salcha’s post below. She said she had the most of her hairloss 2/3 weeks after her first chemo and she was a cold cap success. I had my first chemo the day after yours - so let’s compare and contrast!! I’m on fortnightly AC, so am back in tomorrow for another blasting…
Sandytoes -thanks for reply-i think I was having a bit of a “wobbly” yesterday but it would be great to support each other-please feel free to pm me at any time
Hi ladies -hope you all had a good weekend-Marie
Hi girls, just reading your messages re the cold cap. Some of you may heave read that I managed four AC with the cold cap. I lost quite a lot of my hair and found the cold cap became very painful when there was more scalp on show. When I looked like Riff Raff from the Rocky Horror show with just a fringe and wispy bits at the side ( and it was stillmcoming out!) I decided to stop the cap for the remaining four.I had the soreness on my scalp as well. It felt like when you’d had your hair in a ponytail for too long. In my case the soreness preceded handfulsmof hair coming out. It was as if the roots had died but the hair was still there. One of the nurses said that folliculitis was common. I’m now sporting a very grey Lisa Stansfield look for those old enough to remember. Hideous curls have just started appearing but it’s too short to get the straightners on it and my BCN says I shouldn’t colour it for 6 months! X