Starting chemotherapy next week just wanted to ask for advice and opinions on using a cold cap as I have been told I will lose my hair. Does anyone have anyone have any experience using a cold cap and do they prevent hair loss. Many thanks db
Hi Dizzybird,
I didn’t use the cold cap, but I did meet people who did. There are no guarantees, but those who try it never regret their decision to go with it.
One woman who started chemo at the same time as me used the cold cap, and had the same FEC-T regime. She managed to keep her hair for two rounds of treatment before she abandoned it as it was falling out fast. However, another woman started a week later (I met her during radiotherapy) and she kept a good head of hair throughout. She said it had thinned a bit, especially at the temples, but it looked great.
You haven’t mentioned what you hair is like - long or short, straight, wavy or curly, etc. The general advice seems to be if it is long (as mine was) to get it cut short(er)even if you use a cold cap. The three of us I have alluded too all had chin length bobs at the start of the process; some people have it cut very short and that may make a difference, I don’t know.
Hope this helps a teeny bit, there are of folk on here who ahve used cold caps and can give your first hand experience.
Hello Dizzybird - I tried the cold cap once - but I don’t think the nurse that helped me did it right - you are meant to wet your hair and apply lots of conditioner before putting on the cold cap that should be at the correct temperature before you put it on. You then have to have the cap on for 30 minutes before chemo and then leave it on for at least 90 minutes after chemo - so it adds on at least 2 hours to your time in the unit.
My hair started coming out 14 days after my first EC Chemo treatment and I decided not to continue with the cold cap - my treatments now only take 30 to 40 minutes and I shaved my head and wear a wig.
Yes it was upsetting to lose my hair, but I love my wig.
I think I was unlucky with the cold cap - my nurse faffed about with the cold cap and my hair was nearly dry again when she put it on. Your hair needs to be really wet! Why not try it and see how you get on? After the first ten minutes it really isn’t too bad.
Debbie
I used the cold cap … I’m on EC … which I’m told is one of the worst for hair loss. It hasn’t really worked. Just done number 5 and although have my hair clippered now I used it again … cos I still have hair and I’ve only got one more to go. Its worth a shot though … as I’ve met many people for whom its worked totally. If you can get through the first ten or fifteen minutes its fine. It goes on 30 minutes before chemo …then throughout chemo and stays on for two hours after - so it does add time … but what else would you be doing?! Good Luck … and make sure the cap is as tight as you can bear.
I agree it’s all down to technique, make sure you have loads of conditioner on and that the cap is really on tight - some nurses seem to be better at it than others. I have used it for 3xFEC and have lost the most on the top of my head - but can cover this with a thick headband, there is a general thinning as well which made the cold cap VERY cold for the first 10 mins on my last attempt. I am moving on to 3xTAX next so will continue as long as it seems worth it - with a view to salvaging some of my hair. I just take some good mags and goodies to keep me going for the duration. My hair is collar length and layered - I had it cut just before I started chemo - you need a few longer layers on the top so you can cover any thin patches and change your parting. I have got a wig and headscarves just in case.
I had my first chemo over a week ago with the cold cap. It was cold but totally bearable but i did get a headache because it was so tight. Have been advsied to take some paracetamol before my next one.
It does make for a very long session but I am determined to give it a go but now find myself on constant loss-watch !! The worst bit so far has been waiting as long as possible to wash it…drives me mad !
My hair was soaked with a water spray first and then smothered with conditioner and i didnt wash it it for about 48 hours afterwards. Its amazing that my scalp was totally iced-over when the cap came off. so i hope that was a good sign !
I did have my hair drastically cut before hand ( was long and curly, now chin-length and layered) which has taken some getting used to.
Good Luck…it really isnt as bad as it sounds and DEFINETELY owrth a try !!
M x
Hello!!
I’ve had 4 x AC and 1 x TAX so far and have been really pleased with the results of the cold cap. I do wear hair bands and small headscarves (with most of my hair poking out) just to cover my awful grey roots as didn’t even want to risk vegetable dye.
My hair has thinned quite alot now and I’m a bit worried as I have 3 more sessions left!! But we’ll see what happens!!
There are other ladies on here who’ve had success with the cold cap and their profile pics are their photos AFTER cold capping and they have nice long hair still. I’ve also met some ladies who used it and had a good head of hair afterwards. If you search the forum for posts on cold caps there are quite a few threads with quite a few success stories. I’ll see if I can find some.
I agree that it’s definitely worth a try as it does add time onto the time in hospital - but if you compare that to how long it will take to grow it back it’s not long! I also have so much more confidence going out as I don’t look like I’m having chemo and I hate dealing with pitying looks or questions (unless they’re from friends or family that I feel comfy talking to!).
Madges62 - I had what felt like a large amount of hair loss about 3 weeks after my first chemo. I got the sore scalp feeling that everyone talks about when your hair starts falling out (like your hair’s being pulled back in a very tight ponytail) and gently brushed it all out. Alot came out and I thought that I would be bald when I looked in the mirror, but I had loads still left! I was worried that that was it, but since then it’s just been a gradual thinning. So, if you do have a sudden sheddage, don’t give up!!
Wishing you both lots of success with the cold cap!
x
Hi, wonder if I could get any advice. Had EC 2 on Friday and had hair shaved couple weeks ago. Now I am shedding like a malting dog and my head looks like a map of the world. Should I razor my head to baldness now or let it fall out. It’s all over my pillow. Seems a drastic step but should I face reality and let it go?
I used my lady shave on my head to get the rest of it off. I still have patches of growing hair but it is easier just to get rid of it all. I wear a scarf or nothing on my head in the evenings and a wig when I am out and about. Embrace the reality as it is not as bad as you fear.
thanks ST so many realities to face!
Thank you all for your replies I have decided to give the cap a go I had my hair cut today it is shoulder length now chopped about 6 inchs of hurt a bit as been growing it for 2 years for my wedding next year not worried now as seen some really nice wigs thank u all again everyone seens really nice and your all so brave u put me to Shane I’m like a big baby x I am having my lymph nodes test tomz hopefully ain’t got to them bone scan wednesday start chemotherapy next Tuesday my diary have never been so full well u all know how it is thanks again and thanks for links talk soon tc and good luck all dd
You aren’t a big baby - getting your lovely hair cut is very, very brave. But well done you, because you have taken control and that’s so important becuase this disease tries to rob us of it.
Hope all goes well for your tests and the start if chemo.
Big hugs.
I second that posting!
I decided against the cold cap and actually I’m glad that I did.
My hair lasted exactly 1 day of falling out - scalp hurt like hell (and I have a bit of a phobia about loose hair) so I went straight to the hairdressers and had it all shaved off.
It’s really not that bad, it was liberating and nice and cool for the summer!
Everybody thinks differently about their hair, I wasn’t overly attached to mine so for me letting go wasn’t a big deal.
Try the cap - if it hurts too much or doesn’t seem to be working consider stopping using it and get your head shaved! Join us baldys with pride!