I’m going to be starting my first chemo in a couple of weeks, I will be trying out the cold cap.
Has anybody had any success with the cold cap? I’ve read that the success rate is 70%?
What are your experiences?
Hi there pangapanga,
Yes I had total success with the cold cap. My hair did thin a wee bit but you couldn’t really notice it, I was very lucky. If you can stand the first 10-15 minutes it’s not too bad. I had 3 x FEC and 3 x Taxotere.
Best of luck, take care,
Veggie
Hi there
I’ve almost finished my chemo now - had 4 EC and 2 Taxol - and all with the cold cap on my head - and yes i still have hair on my head.
Admittedly I had very long hair before all this started and was advised to have it cut into a shorter style as sometimes the weight can of long hair can make it fall out. So i had it cut shorter!
As Veggie said, the first 10 to 15 minutes are the worst - apparently I pull a face as if i’m sucking lemons! Once your past that stage, it’s fine! I’m not saying I haven’t lost any hair because I have - in fact a fair amount and a small bit still comes out every day now but I still haven’t had to put the wig on my head - yet!
They should dampen your hair and then put conditioner on it before the cap goes on. Try not to wash your hair for a good three/four days after - in fact if you can go longer then do. The less you touch, comb or wash your hair the better.
It does seem to work for some people and not for others - but I would say definitely try it - well worth it if it works - if it doesn’t then at least you can say you tried. Just remember though, that even with the cold cap, you will still lose some hair so don’t immediately go into a panic and think that it’s not working when some does come out. It does slow down!
Good luck with it and let me know how you get on with it.
Loopy xxx
Loopy, thanks so much for this. I just asked this very question on another string so your experience is so helpful.Any idea how long before you know its working?I see others are saying you lose your hair day 17/20 typically so I guess if you get past that…
Also how much time does it add to the treatment sessions? And finally was your oncologist reluctant? I was told some are because it obviously prevents the chemo getting to your hair follicles & this opens up risk.I dont mean to be pessimistic but if the cancer is going to get to my hair follicles we must be talking huge risk to skull & therefore brain.If I’m going that route I think I might go on a world cruise & forget about treatment anyway!!
Grace x
Hi Grace,
My onc was happy for me to try the cold cap and I had node involvement as well.
My hair wasn’t dampened and no conditioner was put on, the cold cap was just put on and swabs put under the sides so that it wasn’t touching your face.
Bizarrely because I’m a vegetarian it had to be on longer. It was a long haul. I had to have the cold cap on for 40 minutes before the treatment started and kept on for a further 1 hour 10 minutes after treatment finished so it roughly added on an extra 2 hours. I think the time varies though depending on what regime you’re on and the cold cap system used. From what I can remember (this was 2 years ago) I think the cap is changed ever 1/2 hour or so.
Hope that helps, take care
Veggie
Hi all,
I’ve used the cold cap twice so far… 2x FEC. My hospital use’s paxman… The have a good website to answer some of your questions. It’s put on about 40min before treatment and them left of for 2hrs afterward! I actually didn’t find the coldness too bad, actually quite nice. I also cover my hair in conditioner - so take a hat with you to wear going home. I’ve actually lost alot of hair from the top of my head. But I’m just wearing headbands and scarves around that area for now!! It still falls out when you run your fingers through it which is quite distressing. But the nurses did say if it wasn’t working then it would be coming out in clumps!! In some ways I do wish I was brave enough to have just said BYE and clippered it all off, but with 3 young children I just want to try and look the same to them!! Also as for the washing, I have found that not washing it is better - and I am a person that normally washes hair every day with out fail!! It felt abit yukky at first, but I found just using a mild shampoo ( not baby shampoo!) and using no hair products after made it better. Basically I just try to ignore it as much as possible. Haven’t used the hairdryer either or rubbed it dry. Just patted it dry and gently combed it into place! As a ex (B4 children) hairdresser I thought I would have been able to handle this bit and trot off to the wig shop- I’d even be able to cut it just the way I like it!! Maybe if the cold cap doesn’t work next time!
Good luck, hope it works for you xx
Hi,
I have used the cold cap 3 times now and can still go out with my hair and no-one would really notice i had lost any. I have another 3 to go though! I just can’t wash it and style it very well so most of the time it’s greasy with a hat on! But i think it’s really worth it, you don’t have to wait months for it to grow back!I use the conditioner with it so it doesn’t get too knotty.
Good luck xx
Hi Trumpet,
That’s really good news… did you keep you long hair as in you profile pic or get it cut?? I had mine cut short a few weeks before hand. Keep us posted on how it goes.
Sarah x
Hi
I used a cold cap through all my treatment 4 FEC and three Tax. My hair thinned a lot but mainly in length and not in patches. I lost about 40% of my hai but as it was short it wasn’t too noticeable. It looked a mess towards the end but I used headbands, scarves and hats - it was last winter and was cold!
Using it added about 2 hours to the treatment - the only time I found it uncomfortable - apart from the first 15 mins - was during the last two treatments as my hair was thinner than normal.
It has grown back (curly!) and is now beginning to feel like my hair again.
Alos usee cap and kept most of my hair - definitely thinner but if you didnt know me before you would not notice… no wig needed. had hair cut short before because told the better the contact with the scalp the better the result… so really went for it. As hair grew during chemo it also thinned so didnt have it cut again until chemo all finished as now i didnt have so much on the scalp lol Good luck. Deffinitely worth it!
I had my hair cut to just above shoulder length. It has grown to just below shoulder length so am having it cut tomorrow about an inch so i can continue to keep it. Will try and put a picture up of me with my hair now so you can see what it’s like. x
Thanks everyone for the wonderful information.I hadnt realised it was so time consuming but can alter my expectations now.My hair is a similar length to yours Trumpet so you give me some hope!!Fortunately its very thick so I can easily afford to have it thin down…Fingers crossed
Grace x
Hi Grace
Sorry it’s taken so long to get back to you. The week after chemo is never good for me.
The cold cap lengthens your time in hospital quite a lot - usually about an hour before they start chemo and up to 2 hours after its finished depending on the drugs they give you. Its a long time but doable!
As to when do you know if it’s working… thats a difficult one to answer to be honest. My hair “downstairs” came out first and i went into immediate panic but thought Oh well, if its coming out there but not on my head it must be working! Please don’t get me wrong you will still lose hair on your head. I’ve had 4 rounds of EC and am on my 2nd dose of 4 Taxol and this week i’ve lost a major amount of hair! I still have a full head of hair but its very very thin but still I don’t need a wig. In fact so much came out this week I thought that it would all come out but it hasn’t. I’m just hoping it hangs on in there until i’ve finished my next 2 Taxol but i’m not sure it will…! Youu can see my scalp if my hair is parted a certain way but if I brush it all back you wouldn’t know! I know Taxol is particularly harsh as far as hair loss is concerned.
I’ll keep you posted as to what happens over the last two chemo treatments with Taxol and i’mm just praying my hair hangs on in there.
Good luck with it my love. It@s certainly been good for me…so far!! loopy xx
I’m quite new to all of this - I will start my first session of FEC chemo on 30 November and saw my oncologist for the first time this Thursday just gone.
In my black humour way during the conversations with my nurse about how chemo works I wanted to ask for a pink one but didn’t really get the impression that he’d have any sense of humour about it…he showed me around the chemo treatment ward at the end of our chat (kind of like being shown around a new place of work - rather bizarre) and then I saw the caps - and they were pink 
He clearly did have some sort of a sense of humour though because he put one on to show me and told me to bring my camera when I come in for mine.
I am very nervous about the whole thing really, but reading the comments you have all made about this particular part does help.
I have very thick hair naturally so I’m hoping that that will work in my favour. Apparently my friends are going to start a wig fund for me otherwise!
All the best to everyone here xx
Hi
I would echo everything slatch has said. About to go for my 4th FEC and still have quite a lot of hair. It has seriously thinned on top but still haven’t worn the wig or needed to wear a scarf. I will probably resort to a headband if it gets much worse. I have the cold cap, takes about 4 hours in total, the first 15 mins are the worst, my your head goes numb. I also use conditioner and only wash once a week and don’t use any products - so my hair’s a mess but at least I have it. It comes out a little every day and a little more when I wash it, the most came out just before the second cycle. I am pretty much bald everywhere else although I still have my eyebrows and lashes.
good luck
Thanks Leucite & Loopy for the new info.As Missfique says information helps so much to manage the anxiety.
I love the idea of the Pink Caps & hope they are in our honour…Missfique I hope youre right about thick hair being in our favour with this one! Have you been told about the Wig voucher? I’m sure it varies from area to area but here (wigan) we get a voucher for £150 for the wig, redeemable at most good places.For some odd reason you cant “top up” but I’m getting the impression that £150 is ok.Did you see the stuff on the other thread about Trevor Sorbie salons having a charitable trust which will style your wig for free?
The hair loss thing is upsetting me more than anything at the moment (vain little madam)so having options to consider is really helping.
Luck & love to all
Grace x
Ghastly thing, which triggered asthma attacks in me. But I have got pretty good head of hair after 6 cycles of EC. Top thinnned the most - need to push the sodding cap down to make contact - it just seems to want to pop up in a dome and create a void on the crown. Apparently that is the most vulnerable place, so make sure hair is wet/conditioned and as close to your scalp as poss. Slight advantage for those with finer hair, methinks.
Good luck with the big chill.
x
Hi there
I am about to start my first chemo in the next week or so.
Am hoping to be able to use the cold cap, does anyone know if you can use it with any drug and any dose?
I am having 3 x FEC and 3 x TAX.
Thanks.
Nasreen x
Hello. Yes you can use the cold cap whichever chemo you have. I also had 3 x FEC and then 3 x Taxotere. Unfotunately the cold cap didn’t work for me but there were loads of women having chemo at the same time who had marvellous results with it and lost very little hair.
Good luck.
Anthi x
Hi
Thankyou, that is kind of reassuring to know…it seems to be pot luck whether it works or not then.
I will give it a go and see what happens.
All the best to you.
xx