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looeeze's avatar
looeeze
Member
5 years ago

Ice cap or no ice cap? personal experiences?

Hi All,
I was newly diagnosed mid December, have had surgery and am recovering well. I am due to start 12 weeks of weekly chemotherapy using paclitaxel. I will also be receiving Herceptin 3 weekly for 12 months and goserelin (hormone treatment) for 5 years. I have been told about ice caps to minimise or prevent hair loss. From reading it seems that this doesn't always work and also sounds painful. I was wondering if any of you had personal experience of using or trying the cap - obviously the good and the bad. I think it's not so much losing my hair that is bothering me, but the thought that then it is so public and there is no hiding it then :( 
Thank you so much. 
  • Dear looeeze,
    A good fitting cap is important. Even though I always had the same, best size for me. Sometimes an air bubble would be on top of my head under the cap. You could tell because if if you pushed down you could hear a noise of air coming out.
    They had extra straps that I sometimes used when in doubt of the fit. That went over the top of my head around and under my chin. 
    Wet hair is very important, I found out during my 20 week Chemo duration that curly hair should be really wet.
    My nurses never suggested conditioner and I never used it. I suppose it couldn't hurt.
    If you want to talk on the phone send me a private message.
  • Thank you Abbydog
    Ive not been told anything about the cold cap really bit only that i will be offered it. I have read you need to have wet hair and conditioner? Do you apply this there? Did you? 
    Thanks
  • Dear looeeze,
    I very successfully used the cold cap, and would recommend it. I had thinning, but no-one else noticed.
    Other than my close family and friends, no-one knew I was sick. I did not find it painful.
    I probably got a lot less sympathy.
    I did purchase a wig prior to starting Chemo, to be ready. As COVID lockdown was about to start
    and I didn't know if I would be able to get to a wig shop or feel up to it. Or if cold cap would work for me.
    I also had my eyebrows tattooed prior, as I knew they would go.
    All the best with your treatments.
  • Thanks ladies. I really do appreciate you taking the time to respond. Im starting to lean towards the 'stuff it' angle and just go with the flow. I mean how often do we get to start our hair all over again? I have been advised off a great local store that sells head coverings especially for this and their website shows lots of choice. I will also look at wigs down the track when I am in a position to return to work. I teach so I want to be able to confidently stand at the from of the class again and not scare the children :) 
    I wish all of you the very best of health as we fight our battles. I really am being sincere when I say what a bloody fantastic network of strong women we make xxx
  • Cold cap is certainly worth trying but don’t ignore the possibility of a wig. I wore one right through treatment and while close colleagues knew everything, most of the large number of people I worked with on projects had no idea at Allen . There are lots of options from wig libraries to purchase at a range of prices. I opted for a good synthetic wig, easy to look after, no styling required and lightweight. Best wishes. 
  • If you've been given the option and are interested enough to give it a go, why not - you won't know if it's successful for you until you do it.  I did try it for the first couple of AC treatments but found that not only was I losing a fair bit of hair throughout but also that I ended up with a landing strip across the top from ear to ear (possibly caused by the cap not being firm enough against the scalp although the nurses were pretty thorough about that).  That's when I chose to stop as I found that more upsetting than being bald.  The cold cap does add considerable time onto each treatment but if you don't mind that, and keeping your hair if possible is important to you, there's no reason not to try it - you can always discontinue if it's too much.
  • Hi @looeeze, I am sorry about your diagnosis, but it’s great to hear you are recovering well. You will find a wealth of information about the cold cap as many of us have used it with varied levels of success. The good thing is, you can try it and stop at any time as you will know if it is working within a couple of rounds. @kezmusc had a lot of success and has put a lot of information up with pics on the forum and I am sure others will join in too. Don’t forget, you will experience thinning of your hair, but hopefully you will keep most of it.

    I had 4 x AC before the 12 x taxol and the AC is known to cause hair loss, so my experience will be different to yours. It is quite an individual thing and you won’t know until you try. I didn’t have success with it and ended up losing my hair, but I gave it a red hot go and I am happy I gave it a try. Also, my hair started to grow back while on taxol (a lot of us had this) which may mean you have an even better chance of a good result with the cap.

    It adds time to your treatment as you will need to put the cap on for 1 hour before the infusion starts and leave it on for half an hour after the infusion finishes - I think those were the times and I hope I got it right. This adds quite a bit to your time, but well worth it if it works I think. The infusion itself took less than 1 hour in total without the cap, so you can see that it does make for a longer experience if you use it.

    Yes it is super cold - minus 4 - but I just kind of zoned out as you will get used to it. I also took Panadol before I arrived and that helped. The nurses will also give you a warm blanket to keep you warm. I would recommend doing your own research so you know what needs to happen to try and maximise your chance of success - cap needs to be tight and fit well, hair needs to be wet and coated with conditioner etc. The nurses are very supportive, but you need to make sure the cap fits properly as this is the key to success - only you will know if the cap is really snug on your head.

    I am wishing you all the best with your decision, but I definitely think it is worth a try. I know what you mean, once your hair is gone, your diagnosis can become quite public, but, I bought a fabulous wig (human hair) and it looked great and I can honestly say, a lot of people had no idea I was going through chemo. Take care. M x