Hi Ladies,
I expecting to start chemo at some point and have got upset about losing my hair (as i know we all do).
I would be really grateful if you could share your experience/views on the use of a cold cap - has it worked for you or anyone you know?
Thank you in advance for your replies,
Victoria x
Hi,
I didnāt use the cold cap because I was advise Iād lose all my hair anyway with fec. As it turned out i ended up only having one fec.
If Iād used the cold cap I think iād have hung on to at least a covering of hair.
Without it I lost all my hair just over 2 weeks after my fec. It all came out after washing. It was extremely distressing.
With the benefit of hindsight I wish Iād been a cold capper.
I started chemo in Jan (FEC 75 x 6 ) and am on FEC/2 using the cold cap. For me, losing my hair is the hardest part of the treatment, so I opted to try the cold cap. I was told it doesnāt always work for everyone, but for some people it can be very effective and anything is worth trying!! As at 5 days post FEC/2, I still have a full head of hair, although it is slightly thinner, but looks much the same. I think it is well worth giving it a go, even if it just means you hang onto your hair for a little bit longer! If you do try the cold cap, just remember that for the first 15 to 20 minutes of having it on, it can be really painful and uncomfortable - after that time, it will eases off and becomes more bearable as your head adjusts to the cold. Give it a go - whatās a freezing couple of hours compared to the chance of keeping your crowning glory! 
I cold capped and will again if it comes to it. Tho it was hell on earth and made each session longer Iād still do it again - I didnāt keep all my hair which is very thin and fine anyway but I had a good enough cover that I never wore my wig but did sometimes use a cap thing I got from ebay as a Hijab which was jewelled and really pretty.
Using it - it has to be tight - thats the first thing - not tight then it wonāt work - I think that was one of my problems - one session it wasnāt on properly. They smother your head with conditioner before applying it, and then once itās cold enuf they put it on. The fiorst 20 minutes is worst - survive that and youāre OK. We had a reflexologist on the chemo ward - they now have 2 - who sat with me telling me ājust another minute for meā until that crucial 20 minutes of hell was over and I got thru it. My language of ātake it offā with added expletives was the worst Iāve ever used - Iām not lying - it was hard but worth it.
Extra time seems to vary nurse to nurse - about 30 mins to 1 hour before chemo starts which isnāt too bad cos often the chemo is late onto the ward anyway - this seems to be standard across chemo wards - and 90 - 120 minutes after.
If youāre FEC Ting, they say if your hair survives the FEC youāll be OK for the T, if youāre just FECing youāll probably have an easier time of it chemo wise - most people tolerate FEC better than T - it makes you sick but thats controlable andn constipated but tahts controllable whereas T is the tired and achey half for most people which is harder - but your hair will suffer more. Limited washing and tending is recommended afterwards too, to give it the best chance of survival.
Iām on Capecitebine right now for secondaries and floiurishing on it - my hairdresser asked me last tiome I saw her what I was doing to my hair its the best sheās seen it - chemo say I!!
Hope this helps
Nina
Iāve had 3 FEC, about to have the fourth, have used the cold cap and still have all my hair. I thought it was starting to fall out after FEC3, but it was a false alarm.
I used it for 6 x FEC-T. I lost hair throughout, so donāt give up just cos hair is coming out. Itās surprising how much hair you actually have. As Broomstick lady says - make sure it fits tightly as, otherwise, you are wasting your time. Be aware that some nurses will be negative about it because it takes more of their time and effort. I only ever needed a wide headband to cover up the thinnest bits, and my hair thickened up and looked ānormalā at the end at about twice the rate of those who went bald. It was definitly worth it at the end.
x
Hi Iām currently using cold cap, would suggest that you get your hair cut as short as you dare. Mine short back and sides is evenly thinning, not losing clumps, just regular loss. I wash once a week, I comb once a week, I use an organic shampoo and condition and pat dry, sometimes dry off with warm hair dryerā¦ Defo worth a go, and if itās short you are not traumatised with the hair lossā¦ honestā¦
No one has noticed my hair loss, as it seems to be the fine hair underneath that goes first, so the top layers are still giving me complete coverageā¦ Cold cap a doddle the first time, 2nd time uncomfortable for 15 mins then you donāt noticeā¦ I also take two pain killers before hand, that helpsā¦
Good luck x
I used the cold cap 14 years ago on AC chem and kept my hair. Also using it again now had 3 x TC and still got my hair. Both times it has thinned but still ok
Wendy
I have had 6 FEC and am now 6 weeks from the last dose. I shed hair throughout but although it thinned a fair bit I had enough to never need wigs, hats or haribands. It is still shedding which is annoying as I thought it would have stopped by now but the new hair is coming through so it looks a lot thicker on the scalp than it did. It isnāt in gret condition and as dying it is out for the time being, I am faced with more grey than I realised I had but you do get used to not having beautifully washed and styled hair.
As Maggie says, wash once a week with PH neutral shampoo, comb once a day and to add another bit of advice, buy a silk pillowcase as it stops your hair pulling at night.
The cold cap does get increasingly more painful as your hair thins but as others have said as long as you can grin and bear the first 15 mins it is bearable. As others have said, take paracetamol beforehand.
Good luck and you might want to check out this link - lots of chemo tips including cold capping:
chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping/
Jayne x
Iāve had 5 out of 6 FEC and am using the old cap. Still have a full covering of hair although there has been a lot of shedding. I make sure I use organic shampoos and conditioners which do not contain SLSās or parabens and only wash my hair about every 5 or six days and then very gently. I let it dry naturally and try not to mess about with it too much.
As far as time of wearing the cold cap is concerned my chemo nurse showed me the instructions that come with the caps and apparently the time for wearing the cap before and after chemo is dependent on the type of chemo you have and the strength of that particular dose. For instance FEC75 takes slightly less time than FEC100 and FEC-T will be different again etc.
I certainly donāt regret using the cap. Still have one FEC to go but donāt look like a cancer patient. Iām a private sort of person and have only told my immediate family and 3 close girl friends whom I trust about my conditon. This is the way I deal with things and Iām getting through it better mainly because I still look like me. Just my way - wouldnāt work for everyone.
Dear Victoria,
there seem to be lots of examples of where the CC has helped us to keep our hair. However, for a % of women it doesnāt work. Before treatment I had thick, ginger hair and I was worried that if I did lose it then it might not come back ginger. I used the CC for my first 2 cycles of FEC100 and echo the comments about the first 10 minutes being the toughest. However, on day 2 of cycle 2 I lost all the hair off the top of my head but retained it at the sides - it just didnāt work for me. I was very distressed when the hair came out as I really hadnāt expected it to come out because of using the CC. So, Iām not saying expect the worst but do try and pepare yourself for some hairloss.
I finished my chemo at the end of October 2012 and now have about 1 cm of growth all over - thicker at the sides than on top. It is ginger! When I had no hair I did eventually get used to it and went scarf and wig free in front of close friends and family.
So, I would say, Go for it! You have nothing to lose in trying the CC and hopefully a decent covering of your own hair throughout treatment to gain.
I was advised not to use the cold cap and from 3 people I have met in the flesh who used it they all lost their hair so I suppose everyone is different.
I did not use it as I was advised not to and at the time (nearly a year ago) the thing that I was most worried about was loosing my hair but if you do decide to use the cold cap and it works then great but if it doesnt work I just want to let you know that loosing your hair is not so bad and this is coming from a person who has had long blonde hair all her life. Having long blonde hair was my thing, it was what I was known for, I was terrifed about loosing my hair.
I finised 4 x fec and 4 x tax 5 months ago and my once blonde hair is growing in black and I have about an inch of growth.
All the best to you whatever you decide.
Hi
I had no option of CC. I just did not know what to expect. However, once I decided it had to go the hairdressers did an emergency appointment and then straight on with a scarf. The āwashānāgoā hair style was convenient and even slightly liberating. Showering and getting ready in the morning was easy, just a pat and on with the hat.
It is now growing back and its almost exciting. It really has not been that bad.
Best wishes to everyone
Wow . . . thank you all so much for your replies. I would like to reply to each one - but there are so many - SO a big thank you to all for sharing your personal experiences.
Iām going to go for it - Iāve had long hair all my life (I hide behind it and canāt imagine not having that safety net - Iām worried Iāll hate the person looking back in the mirror).
Thank you x x
Go for it Meemoo - I hope the cold cap works for you. Make sure you get the hair wet through and smothered in leave in conditioner before the cap goes on. Wear warm clothes because you can get cold and, most important, take a hat with you to wear on the way home because your hair wonāt be a pretty sight and you canāt wash it for at least 48 hours post chemo. Good luck.
Cold cap is not offered here in Calgary, Canada.
I heard about it via my brothers wife who is having Tx in England but decided against it.
I wonder if HJU lost her hair at the top but not the sides due to the top being not so tight?
Anyway, I havenāt used it, but after three cycles of AC I am still growing hair mostly on top of my head, while it is practically smooth at the sides and back. I could probably sport a threadbare Mohican, but opted to shave it all and be smooth all over! :o
My choice. I am starting to feel quite brave about taking off my headcoverings in public places if my head gets hot. Itās a speedy way to recover from hot flushes! I canāt see it myself unless I catch sight in a shop window etc, so it doesnāt bother me, and if it bothers other people, then that is THEIR problem! 
The cold cap not offered her in the canaries either, when I mentioned it they seemed to not be interested because they said the purpose of chemo is to get rid of all the quickly dividing cells hence the hair fallout. If its not aloud to do this then there may be some cells left in the hair folicules, personally Id rathernot take that chance so didnt pursue it. Has anyone else heard this or are they just not offering it. Xx
Hi
I had my treatment 2 years ago. I did use the cold cap. it is quite uncomfortable for the first 15-20 mins. Try and have a hot drink then so that it takes your mind of the cap. I lost quite a bit of hair, but also kept plenty. I would advise wearing your hair up in a loose scrunchie in between treatments, as when i had mine down i would see loose hair and would pull it out with my fingers. When it was up it stopped me from doing this and less hair came out. I used to blow dry my hair with a cold hairdryer after washing. Go to a health shop and get there ph balance shampoo its better than baby shampoo. I had shoulder length hair it went a lot thinner on one side but looked ok when i put in scrunchie. Plenty of conditioner before the cap goes on, during treatment keep pressing the cap down to make sure its fitting well.
Hope this helps, good luck with your treatment.
Tricia x
Featherbird - there is a risk with some kinds of cancer, but not primary breast cancer. There is a study I found before and posted on the December chemo thread, but I canāt find it now. Basically no evidence has been found of breast cancer spreading to the scalp after cold cap. The only people who had skin mets on their scalp also had extensive secondaries. If you have extensive secondaries then it can go where it likes. I think the question to ask is āwhat is the evidence?ā then you find out if it is backed up by anything or is just an opinion. Then you can decide for yourself.
http://www.msc-worldwide.com/scalpmets.html
This is not the study, but the best I could with my current chemo brain.
Iām new to this site. This has been so interesting to read all your comments and advice. i am due to start FEC the week after next with CC, and up til now havenāt known any details. I hope you get on well with it when it happens.