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.

  • Thank you for this posting - like others above o start my chemo next week following a mastectomy and I’ve opted to use the cold cap - it’s so helpful and reassuring to hear from people that have actually used it x I hope things go well for everyone and I’ll let you know how it goes x

  • Hi there - well I did use cold cap but only twice - it didn’t work for me after all and it made sessions so much longer - almost another 2 hours in fact. My second cycle was 20 December and lots of hair was already coming out - I had very thick hair so I didn’t worry too much but after second session great clumps came out and I fell apart/ I was devastated and so very sad so I haven’t used cap since. I got a wig beginning of January and my head is shaved completely- I hate it it’s sooooo cold without hair but it is what it is - sadly for me the cap didn’t work but it was worth trying just in case - good luck to you all x

  • Hi, my mothers been diagnosed with cancer- aged 65, and shes really worried about hair loss. 

     

    I have heard about the cooling cap, and was wondering whether could recommend where to purchase one and also any other thing she could use to reduce the likeihood of hair loss?

  • Hello Nat2018

    I am sorry to hear about your mother's diagnosis. You cannot buy the cold cap. it is not that sort of thing as it is attached to a refridgeration unit. Instead the chemo units have them. When your mother goes for her pre chemo talk she needs to talk to them about the availability and to make sure they book one for her to use.

    Please reassure her that although the cancer treatment can be unpleasant (everyone is affected in different ways) there is an end in sight and she will be able to get back to enjoying life again.  If she has to have radiography afterwards then this is a doddle. I actually enjoyed mine. All the staff I met thoughout my treatment were marvellous. Best Wishes to her over the next few months. xxx

  • Hi, I'm due to start my 2nd round of chemo next week and opted to use the cold cap...all was good until day 16 (yesterday) when I last around 10% of my hair which is lots for me having very fine, long hair. I rang my hairdresser who came to my house and cut it short in an attempt to reduce the stress on the roots....in your experience would you choose to continue with the cold cap for future treatments? I guess I'm asking if you lost hair in the first couple of weeks or later in your treatment?

    xx 

  • Hi  shazzyb

    so sorry to hear your diagnosis but do remember to come on here if you’ve any questions - I found it very supportive - I finished my chemo mid March and radiotherapy mid May- I used the cold cap for first two treatments but as you’ll see from earlier posts it didn’t work for me. My hair started to thin  a few weeks after cycle 1 and then almost immediately after cycle2 (20Dec) lots of my hair came out     And so I decided not to use it again- although my experience was not good others have found it did work so I guess it’s down to how you feel about it really - I wish you all the luck in the future and pray all goes well for you - I now have my hair back but it did take quite some months to get a good covering- it’s very curly too !! 

    Xxx

  • Hi I’m really sorry to hear you are going through all this.i used the cold cap for all 4 of my treatments and it was really worth it. I started losing my hair on day 14 of my chemo. The cold cap was tolerable up u til my last dose of chemo. It was unbearable on my last one and haven’t felt anything like it.  I lost a lot of my hair and wore a wig throughout my treatment. I’m so glad I kept on with the cap though because it meant that 6 months after my chemo I could have hair extensions! If I hadn’t continued with the cap it wouldn’t  have been possible for a lot longer. After using the cap my new hair seems to be growing really fast and it is really strong now where as before it was very brittle and quite fine, the breast cancer nurse I spoke to said the change is probably down to the cold cap. When I have my extensions adjusted my hairdresser has even commented how I don’t seem to have any dead hair in the extension wells, most people have handfuls, so don’t seem to be losing any hair at all now. I know The cap may be uncomfortable and May seem pointless at times but if I was to go through the Treatment again, i would continue with it. Why don’t you keep trying it, it can’t do any harm? I really wish you all the best with your treatment and I hope you kick cancers butt good and proper xxx

  • My Nan had esophagus cancer and used the cold cap throughout her therapy. I honestly hardly noticed the difference in her hair! She said she felt it didn't really grow very much during her treatment but it didn't fall out either. Obviously everybody reacts differently and unfortunately I cannot use the cap throughout my own treatment as I have blood cancer, however having seen its benefits in others I say go for it if it's possible for you :)

  • Hello shazzyb

    I was the person who placed the original message about my experience of using the cold cap. I am sorry to hear that you are not finding it very successful. On my cold cap machine there was a set of laminated tables which gave the treatment name and then how much hair you could be expected to retain at the end of the treatment. It varied quite a bit depending on your chemo regime.  I had breast cancer and was on FEC-T and the table said that hair loss would be in the region of 35%.  So losing 10% of your hair at this stage does not mean that you are going to lose all of it.  If it was me, I would continue to use the cap unless I got to a point where I had lost so much hair that it was no longer worth it.  A friend I made during chemo had finer blonde hair and she lost about 30% overall she reckoned, but you would not have known she was on chemo, as the loss was even over her whole head.

    Whatever you decide, I hope the chemo goes ok for you. Don't worry about radiotherapy. Compared with chemo it is a doddle and I actually enjoyed going to the radiotherapy unit every day and seeing people. 

    Good luck in the coming months. Never lose sight of the end of your treatment journey, because it is always getting closer. And then there is the rest of your life to enjoy.

    xxx

  • Thank you so much for the responses!

    I awoke this morning to a complete bald patch right on the top of my head where there is a slight dip so I asuume that this is where the cold cap didnt quite fit closely enough. I'm on EC x 3 cycles followed by Docetaxel x 3 cycles for breast cancer, 'mop up treatment' as the cancer was sucessfully removed with clear margins but it had managed to get to my lymph nodes so the aim being it not spreading or recurring. Reading these messages and the experiences of others has realy helped , I was inwardly angry and quite teary this morning but tried not to show it for others around me , mainly my 17 year old daughter who has been amazingly posiitive and supportive. I'm seeing the Oncologist tomorrow and start cycle 2 Wednesday, appointment at a wig clinic in the afternoon...not sure how I feel about that.

    I will keep you updated....thanks very much again!! 

     

    xxx