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lilys's avatar
lilys
Member
3 months ago

Cold Capping and hair loss experience with TC chemo

I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap.

Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session? 


chemotherapy
cold-cap
cold-caps
hair-loss

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  • lilys's avatar
    lilys
    Member
    2 months ago
    Update: As I thought, I left the cool capping session with no chance of any hair retention. It’s all gone. 
    Lesson learnt should I one day need to go through this again: always confirm my nurse will be wetting my entire head and cover it all with conditioner to maximise the chance of successful cool capping. All the nurses I’ve come across are lovely and caring, but the odd one may not be well trained on cool capping prep. 
  • lilys's avatar
    lilys
    Member
    3 months ago
    Thank you @Abbydog for your advice. Sounds like we have very similar hair type/style, colouring issues 🙂. Your response is reassuring. I’ll keep my fingers crossed I have a similar outcome. 

    I hope everything went well for you. 🥰
  • Abbydog's avatar
    Abbydog
    Member
    3 months ago
    It was gradual. I never noticed it in the shower or on my comb in an obvious way.
    I just noticed that you had said wavy course hair, mine is curly too. I believe it is more important to make sure that the hair is properly wet. I normally straighten my hair but had it cut shorter during Chemo and went back to curly. As I was told not do blow dry or straighten while going through chemo with cold cap.
    I did on occasion blow dry my fringe. 
    The only other thing that isn't always a good look, was the regrowth if your hair is normally coloured.
    I didn't wait too long after chemo to colour my hair. I'd need to look up photos to tell you exactly.
  • lilys's avatar
    lilys
    Member
    3 months ago
    Thank you @Abbydog. Did you lose all hair after first treatment or was it gradual loss after each treatment? Did your scalp get really cold? 
  • Abbydog's avatar
    Abbydog
    Member
    3 months ago
    Hang in there. Especially if you do not find it too difficult. 
    I didn't take any drugs for having Cold Cap. After adjusting to it going on and once all was set up, I would often sleep. For me the worst part was going to the toilet, in the middle of it all.
     And of course it adds time to the Chemo session, but well worth it.
     I had EC X 4, and Paclitaxol X 12, and my hair only thinned on top. In part that was due to the Cap not fitting as well sometimes on top. Sometimes they added an extra strap that went over the top and under my chin.
    Make sure that your hair is very wet, and cap fitting as well as possible.
     All the best.

  • lilys's avatar
    lilys
    Member
    3 months ago
    Thank you @anna15 for sharing your experience and tips. I hope your hair lasts for the remaining treatments 🤞. All the best to you. 
  • Anna15's avatar
    Anna15
    Member
    3 months ago
    Hi Lilys, I am half way through 6 rounds of TCHP and did the cold cap from round one. A girlfriend told me it is almost unbearable so I prepared myself. I am given half a relaxant before each round and have found it tolerable. I must say it depends on the nurses fitting it properly, wetting etc. I am a few days post round 3 and yes my hair has thinned but I can cover the thinner spots and most people wouldn’t know. Not sure how much longer my hair will last. Other tips I was given were to not wash it just before and after chemo.