Paxman Scalp Cooling

KyzaD69
KyzaD69 Member Posts: 22
edited July 2019 in General discussion
Hi All, my first post here, so I have been diagnosed with triple negative breast cancer and about to start TC (docetaxel and cyclophosphamide) chemo therapy and was wondering what everyones thoughts on the scalp cooling. I am trying to make my decision to have a go or not and its a lot harder than I would of thought.

If you had your time over again would you or wouldn't you do it ? My currents thoughts are, just accept you will lose your hair and don't add any extra anxiety to your treatment.
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Comments

  • Afraser
    Afraser Member Posts: 4,352
    I didn’t have the option when I had chemo and I am not sure I would have lasted the distance, intense cold on my head is something I would hate. I possibly would have tried it on my hands and feet if it had been suggested. No-one likes losing their hair but it’s individual just how much it matters. If it had mattered more to me, and I had the option, I would have at least tried it I think. If you can stand the sensation, you can then judge if it’s working or not. Best wishes either way. 
  • lrb_03
    lrb_03 Member Posts: 1,267
    @kezmusc had great success with scalp cooling. I was actively discouraged from it, so never tried. 
    Many others on here have tried with varying degrees of success,  @Sister@kmakm, @Kiwi Angel
    If you entef scalp cooling in the search box on the forum home page you will find some other discussions on the topic, too
  • kmakm
    kmakm Member Posts: 7,974
    I had TC and gave the cold cap a go. My sister had just died from BC the year before, I'm now raising her kids and I wanted to spare them the visual reminder. I actually wasn't bothered about losing my hair.

    I don't think the cap was fitted properly. It absolutely must have full contact with your scalp. Mine was firm at the edges, and I didn't lose much hair there. But above that band the contact was patchy and then absent. As a consequence a lost all the hair in the top of my head, and big patches below that. It looked dreadful and the mess was distressing and annoying. So after two goes I stopped.

    If it ever happened again I wouldn't bother with the cold cap, but as I said, I didn't really care about losing my hair. I know it's tremendously important to some, but it wasn't to me.

    If you do go ahead, make sure the cap is well fitted and keep pushing ir down.

    All the best, and let us know what you decide. K xox
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    I used it and my hair thinned considerably but grew back much quicker than than those that didn’t use it. It did make my chemo longer each visit and the first 10 minutes of having it on was like an intense icecream headache but I would take a couple of Panadol before each visit. I still had to wear a hat or wig near the end of chemo as I was patchy but I’m glad I used it due to the rapid hair growth post chemo. 
  • KyzaD69
    KyzaD69 Member Posts: 22
    Thank you so much for your responses I think I have made the decision not to go ahead with it. I just think if I just accept or prepare that I am going to lose my hair and take  that added stress and anxiety away, of extra time and pain on something that may not work for me. I really don't do well with pain and cold and I figure I am already going to have a lot to deal with treatment starting.   :) 
  • Amazonian
    Amazonian Member Posts: 18
    I had TC and wore the cool cap, soooo glad I did! My hair thinned out extremely, but I managed to have enough hair left to get away with a hat for a couple of months and now with the new growth you wouldn’t notice.  
    I say try it!!
    If you really hate it after one go, you don’t have to wear it again!
    It didn’t bother me at all. Yes it’s extremely cold, but my nurses gave me a Valium and some panadol and I was fine!! 
    Good luck! 
  • kezmusc
    kezmusc Member Posts: 1,544
    Hi @KyzaD69,

    I had a different regime to you, 4 x 3 weekly AC and then 12 x weekly paclitaxel.  The cap worked brilliantly!  My hair shed a fair bit but was even all over and no body could tell but me.

    It's definitely cold but only lasts a few minutes for most people then you kind of go numb and it's fine. You get lots of warm blankets from the nurses to keep you warm.
     I never found it painful at all and I really didn't care about the extra time.  The day was buggered anyway so what's an extra hour and a half.
    It does add a bit of extra stress the first few weeks until you see how it goes.

     Honestly, they could have dragged me through a field of broken glass if I thought it would have helped. Everbody is different and it's just up to you and how you feel about the whole thing.

    All the best xoxoxox

    https://paxmanscalpcooling.com/experiences/testimonials/kerry-muscat
  • Jen029
    Jen029 Member Posts: 21
    I had the same treatment as you are going to have and used the cold cap. As others have said it was uncomfortable for about 10 to 15 minutes and stretches out the treatment time, but for me it worked extremely well. My hair did thin out but not to the extent that I needed to wear anything on my head, in fact unless you knew me you couldn't really see much difference. It also grew back pretty quickly once the treatment was finished. I know everyone can have a different response but for me it was definitely worth doing.