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Cooling cap

NelSkyNelSky Member Posts: 31
edited October 19 in Newly diagnosed
Hello beautifuls, 
So I’m tossing up between pre shave and trying the cooling cap. Has anyone has success with the cooling cap ?? I’ve had a conversation with my 15 year old son and he wants me to shave as he doesn’t want to watch it fall out. I think he was very brave for telling me this. I’m just wondering if anyone has had success with the cooling cap as I was going to try it ?? 
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Comments

  • MazbethMazbeth BrisbaneMember Posts: 57
    Hi @NelSky These initial days are pretty challenging and you will find so much information and support here. I am going to mention @kezmusc as she is a wealth of knowledge and positivity on lots of stuff, but especially her success with the cold cap. I started chemo in January and finished in May (4 x AC and 12 x taxol). I tried the cold cap, but it didn’t work for me and I ended up shaving my hair - I found that process pretty hard. As you will hear, we have all had varied experiences with it and it really depends on each person. I knew after my second round of chemo that I was losing way too much hair to even try to cover it. I know someone who had 4 x AC only and used the cold cap and while her hair thinned, people who didn’t know she had it would never have guessed. My advice would be to be prepared for all possibilities, I bought a fantastic wig which was great. I am now 5 months post treatment and my hair has grown back, I have had it coloured and I can even get a straightener into it! I am wishing you well and I am happy to offer any help you may need.🙂
  • kazbkazb se melbourneMember Posts: 19
    Hi @NelSky ,I had 12 rounds of Paclitaxel,and used the cold cap with very good success.  maybe a little bit of thining, but definitely not noticeable.  It does add time to each of your treatment, which is a consideration,  for me ,as it was during the first lockdown, I had nowhere else to be, and keeping my hair  was important and helped me to feel normal.  You do need good nurses though to take time in getting the fit right each time.

  • StarGirlStarGirl Member Posts: 105
    Hi @NelSky I did 18 weeks of Paclitaxel with the cold cap in 2015. For me it was 100% worth the extra time. I didn’t tell my kids and because I didn’t lose my hair they never even noticed any difference (granted they were 3 and 5 at the time so not super observant). It’s a personal choice so do what’s right for you, but there’s no harm in giving it a go. Best of luck X 
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 150
    Dear Nelsky,
    You've got nothing to loose if you try. You could shave if it becomes obvious it isn't working.
    I used it successfully. ECx4 and Paclitaxel X12.
    Many people didn't know i'd been having treatment for Cancer.
    The cold did not bother me much. The temperature drops in about 10 increments, over 1/2 hour.
    You get used to it just like you do when you jump into a pool. I often fell asleep, while the Chemo was in progress.
    It did add extra time 1/2hr before and an hour after.
    You should have a good indication if it works after 2-3 sessions. You could decide then, whether to continue.
    I was advised not to blow dry or straighten my hair.
    If you go ahead, make sure your hair is very wet, and the cap fits well.
    I think that there are 3 sizes. The nurses were great at doing this for me.
    The caps are not custom or a perfect fit. I sometimes wore an extra strap over the top, when there seemed to be an air bubble. 
    I had some thinning, but no-one seemed to notice but me.
    I can send photos if you message me.


  • FLCloverFLClover Member Posts: 359
    edited October 17
    My friend used the cold cap a couple years ago. She showed me pics (cos I didn’t know she had cancer at the time) and her hair looked great. She said there was slight thinning, but other than that it was fine. But as @kazb and @Abbydog said, it does need to be done properly by nurses who are experienced with it, and you might need to be persistent. It’s a personal choice, but it would mean less damage to the follicles, as well as keeping your appearance the same x
  • NelSkyNelSky Member Posts: 31
    Thanks for all the wise words XX My treatment is 4x TC every 21 days. It’s a short course so I’m told. Has anyone had cooling cap success with this type of chemo ?? 
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 150
    With so few treatments I would definitely give it a go. 
  • MazbethMazbeth BrisbaneMember Posts: 57
    Hi @NelSky I would definitely give the cap a go for sure. As the girls have said, just make sure it is a firm fit. I wet my hair before I got there, but the nurses had a kit - water spray bottle, Moo goo conditioner etc. The nurses were great and really supportive of me having a go. You can YouTube information/tutorial so you are prepared when you get there. 
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 150
    Dear Nelsky,
    I'm sorry but I'm not sure what you mean by TC. What is the abbreviation for?
    I did EC which is Epirubicin and Cyclophosphamide x4, then Paclitaxel x12
    I'd still try the cold cap. You've got nothing to lose.
    I didn't use conditioner, I hadn't heard that that was a good idea. It couldn't hurt.
    The nurses did it all. But I did sometimes encourage more water.
    I read somewhere that curly hair may need more water.
    It conducts the cold. 
    If you do it don't pull the cap off fast, there could be icicles. Then you wait a few more minutes.
    I don't think that there is a lot of info on why it works or doesn't.
    One thing for sure is that you will leave Chemo with wet hair. Take what you need to sort your hair out especially if you don't go straight home. My hair is curly, so I did add some hair product.
    I saw ladies using Cold Caps with long and short hair.
    Let us know if you go ahead and how you go. 
    We'd love to hear from you, on how you go with Chemo anyway.
  • FLCloverFLClover Member Posts: 359
    Hi @Nelsky, I was going to have 4 rounds of TC every 3 weeks if I had decided to do chemo. I asked my onc about the hair loss, and he said that with those drugs I had a smaller chance of losing hair. He said I would be able to do the cold cap if I wanted.  So there’s a good chance the cold cap will really work 
  • gossy29gossy29 Mornington Peninsula, VictoriaMember Posts: 6
    Hi @NelSky, I've just finished (July 20) 6 months of chemo and did the cooling cap all the way through. Phase one was 4 sessions of AC and then 12 weeks straight of Paclitaxel. My hair definitely thinned out alot, especially in the first phase but I did manage to keep most of it and at no point did it look so thin that it needed shaving.  The cap was really cold for the first 5 to 15 minutes but after that I didn't find it painful.  It does add a bit of time onto your treatment though.  I would definately do it again although I'm never going to have to :)
    Good luck with it.
  • kezmusckezmusc Member Posts: 1,507
    edited October 19
    Hi @NelSky

    Thanks for the tag @Mazbeth<3 Sorry for the late reply. I have been on holidays:)  Absolutely the cap is worth trying if it's available to you.  I had great success with it.  I have a full walk through do's and dont's that I can send you.  Just send me a pm if you are interested.
    xoxoxo
  • NelSkyNelSky Member Posts: 31
    @Abbydog TC is the type I’m having taxotere and cyclophosphamide. 
    @Mazbeth yes please but how do I pm
    ?? 
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 150
    Thanks Nelsky, I wasn't familiar with those particular Chemo drugs.

  • FLCloverFLClover Member Posts: 359
    @NelSky go to the menu, in top corner, and you’ll find ‘inbox’. Go there, and that’s how you send private messages. Send it to @kezmusc, as she’s the one who has the dos and don’t s list for the cooling cap. @Mazbeth tagged her so she could see your post 🙂
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