Thinking about using the cold cap?

Before my breast cancer chemo I was desparate to keep my hair. Having only average plain looks and a lumpy scalp I knew that being bald would really not suit me. I also did not want to see a cancer sufferer looking back at me every time I looked in the mirror.  So I tried the cold cap and for me it was very successful. I even had to have my hair cut and thinned out during chemo.  I reckon I lost less than 10% of my hair but then, not every body loses their hair completely. My body hair everywhere else thinned and seemed to stop growing but strangely, I did lose all my pubes, although when and where they went is still a mystery.  It was only after my 6th and final chemo that my eye lashes and eye brows thinned a bit.  Another cold cap lady I met at the same time thinks that she lost only about 40% of her hair but she had no bald spots and she looked fine. Although she did lose all her body hair.

Now there are a lot of scare stories about the cap; headaches, unbearable pain etc which might put you off even trying it. But my advice is, if you are really desparate to keep your hair then try it. 

So here are the facts:

You have to wet your hair and rub conditioner into it at the start of each chemo. This improves the freezing ability of the cap. The nurses will always help you with this.

Yes it is unbearable for the first 10 mins. I used to shuffle my feet around and squeeze my eyes shut and wring my hands, anything to take my mind off the extreme discomfort.  But once your scalp gets used to it after those 10 mins or so, it no longer hurts. The cap freezes your scalp to -4 degrees I was told and ice actually forms on your scalp.

I took 2 paracetamol tablets an hour beforehand and I took 2 more 3 hours later, before the others had worn off. These helped to keep headaches at bay and also any irritation with the tight straps. Don't let the straps be done up so tight that you cannot bear them. Insist they loosen them a little and ignore the "it wont work" warnings. The straps need to be tight but should not be unbearable, especially the chin one. Ask them to put a little piece of lint under the chin strap if it irritates.

It does add an hour to the length of the treatment as the cap has to be on for at least 30 mins before the chemo is given and then you have to keep the cap on for at least 20 mins after the finish of treatment to allow your scalp to defrost although the machine is switched off as soon as the chemo finishes. Removing the cap before defrosting takes place can damage your hair.

As I say, for me it was very successful and it might not be for other people. But looking like yourself all through chemo and the months after can have a marvellous effect on how you feel. So, if you are thinking about it, give it a go and I hope you are pleased that you did. Good luck.

  • Hi Wils3398, 

    I just wanted to stop by and thank you for sharing your experience with the cold cap with us. I'm sure many members who may be having this treatment will find the information and advice you have given invaluable. Hopefully it will help make people less scared of what to expect as well.

    I'm glad it has been successful for you and wish you all the best for future.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Thanks so much for this post. I’m due to start chemo on Thursday due to breast cancer and am having a cold cap. Your post gave me more information as to what to expect so thanks for that. I’m only 36 so still have the vanity thing in me and want to keep my hair lol x

  • Thank you so much for posting this! Can I ask what ur hair regime was because I’ve heard this helps a lot... what shampoo/conditioners you used, which conditioner did you use one your hair on chemo days. How often did you wash your hair etc? I’m desperate to keep my hair because I’m only 31 and my hair is my pride and joy. Won’t feel like me without it and I hate the wig I’ve got on standby xx

  • Oh god I feel your pain. I’m 36 getting married next year and have an 8 year old. So unfair to us all going through all this when there are so many horrible people walking round all healthy :-( no way am I walking down the aisle looking like a boiled egg lol x

  • Hello Dizzle82

    I am glad I was able to help and I hope that your chemo goes well tomorrow. Once you are through that initial 10 minutes of freezing it gets better so hang in there and grit your teeth until it passes.

    Just an extra tip - when you go to your pre-chemo check a couple of days before each session, make sure they have booked you to have the cold cap. They didnt have me down for one session but had a spare machine so it wasnt a problem in my case but always worth checking each time. Take pain killers at a 3 hour interval. I forgot the first session and wondered why I was suddenly finding the tight straps unbearably irritating - the paracetomol had worn off!  Dont forget to take a scarf to wrap your wet head in after chemo when you go home.

    I will be thinking of you tomorrow and would love to hear how you are getting on. The whole cancer and treatment experience is an overwhelming experience that only a fellow sufferer will understand. But you will get to the end of it, radiotherapy is a doddle (I enjoyed mine) and you can rebuild your life again.My life has been so much better post cancer!

    Best wishes for tomorrow. x

  • Hello Lotsoflovexox

    I didnt really have a special hair regime. I bought some "natural" shampoo and conditioner from the chemo unit together with a large toothed Denman comb and a little squirty water bottle in a little net bag - all for £7 - bargain ! Comb was great - still use it now. Squirty bottle really useful to wet hair before chemo session. But I did not like the shampoo and conditioner. The shampoo left my hair squeaky clean - literally - my hair felt completely stripped of softness. So I did not use either product after the first chemo. Instead I went back to my normal brand - Dove.  This lathers really well without a lot of rubbing.  I do not think that the brand of shampoo is particularly important - the chemo damages the root and shampoo cannot undo that. So if you have a brand of shampoo that you currently like to use then I would carry on with that - better to get a 2-in-1 type so that you do not have to rub the hair 3 times when washing it. I washed my hair every other day - it became greasy if I didnt. If you apprear to be losing hair then I would leave it unwashed as long as you feel ok about it. Pat your hair dry and use a large toothed comb, not a brush. If you are going to start chemo soon I hope it goes well for you. Feel free to come back to me and tell me how it goes. Lots of love and positive thoughts to you x.

  • Hi 

    thanks for sharing that. I’m having a mastectomy next week then once recovered chemo and have been wondering so much about the cold cap but after your post I think I might try it. I mean I cant do anything about losing a breast but maybe I can try to not lose so much of my hair .

     

    thanks

     

    Debs

     

  • Hi Debs

    Yes do try the cap. If you cannot stand it during the freezing phase (8 - 12 mins I found) then you can always ask the staff to switch the machine off. They are very understanding about how uncomfortable the cap can be and that it is not for everyone.  But if you can put up with it and retain your hair you will feel so much better during the treatment, looking like yourself.  Good luck and hope it goes well for you.

  • I am due to have my first chemotherapy next week and I have found this really useful, thank you. I feel exactly like you do in relation to hair loss. I have said that want to try the cold cap and this has given me questions to ask at my pre chemo talk to ensure I am well prepared. It may not be as successful for me but I certainly want to give it a go. 

  • Hi wills3398

    im starting chemo tomorrow and going to try the cold cap. My hair is really thin & fine normally so really not holding out much hope . Been looking online to see what hair type works best but not having any luck. The nurse said their seeing good results with most women reporting a 20% loss,, which is great. But for me 20% of not a lot is a lot. Do you know if there’s a hair type that works best.

    noticing your post was in March so hope your through the worst & doing well.