Cold cap yay or nay?

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Hi all I'm due to start adjuvant chemo next week after a double mastectomy with reconstruction..1 of my tumors was triple negative..I have opted to try the cold cap but everyone I seem to speak to including a nurse don't seem to think it's much use..I know there was a lady on here that blogged about her journey and seemed to have minimal loss but I just wondered if that is a rarity..anybody else's experience would be greatly appreciated.

  • Hi Lloydy

    I wrote the blog and for me scalp cooling was I feel successful. I did lose some but knowing what I do now- I would still have continued if I had lost my hair because of the regrowth. I do believe that it protected my hair follicles. My regrowth has been fast and my hair is now in better condition than before chemo. 

    It is of course a personal choice. It can be painful and there can be mixed results. For me it was worth a try and I figured I would give it a try for the first couple of sessions to see how it went. I lost all body hair at around 14 days post first chemo. I figure that this is a sign that my head hair would have gone at the same time. 

    At my hospital I did meet several people also using scalp cooling. All kept some hair- apart from one lady who did not like the coldness and decided to stop. 

    A lot can depend on the chemo regime. I will pop a link to the Paxman site as you can look on there and put in your chemo regime to see what chances other people have had of saving their hair. For my regime I think from memory there was 50% chance of saving 50% of my hair. To me that was worth a try. I did not need to wear a wig, scarf etc. I am glad I did it as it made the journey easier. Paxman also have groups on social media where people who have scalp cooled share their experiences. 

    Home - Paxman (paxmanscalpcooling.com)

    Good Luck whatever you decide. It is a personal decision and only you know if it is worth trying. If there is anything you want to ask- then please do so.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Lloydy, 

    I used the cold cap for all 6 cycles of my chemo.  I was told beforehand by a nurse that only 25% of people get very little loss, 25% get partial loss but 50% still get significant hair loss.  I decided to give it a go in the hope that even if I lost my hair it would come back strongly.  In the end I lost a lot of hair on the top of my head but less around the back and sides.  It started to grow back before the end of chemo and is now thick (and curly) but still short.  There are some photos on my profile.

  • Thankyou for replying..I hadnt thought about the cap protecting my follicles for regrowth.. I'm definitely going to try it..I think I was a little resigned to losing it all but if I can prevent that or help it to regrow quicker then it should be worth it..x

  • Definitely yay.  Had some thinning but never lost it all.  Good luck x

  • Hi Lloydy

    I cold capped  through all 12  paclitaxel  sessions. It's difficult to estimate how much hair I retained but it was probably  60 % +

     My crown was affected the most, but wearing a hairband covered any thinning areas.

     One of the nurses I spoke to thought that cold capping  wasn't working because I was losing hair, so I'm pleased that I had  information from the Paxman website and also from the Macmillan forums about protecting hair follicles for future regrowth.

    I finished chemo 4 weeks ago and am still shedding however I also have good regrowth, some of which is already over 1 inch long.

    A few of the ladies who cold capped alongside me did give up after one or two sessions, whilst others like myself continued throughout. The ones who continued all kept  good amount of hair even though it was thinner than it had been at the beginning of treatment.

    Wishing you all the  best with your treatment

  • My feeling at the time was to give it a go for the first time, see if I could manage it and see what hair I lost. I knew I could stop at any time, even part way through a session- if you don't like it - they can turn the machine off and you can continue without it. 

    You can expect some shedding (thinning) at around 14 days and this is a normal part of scalp cooling and does not mean it is not working. My hairdresser says that my hair is in good condition and more body that is had before.I never had tight chemo curls or much of a change in texture like some people do. I also wanted to protect against any chance of permanent hair loss- which I believe is rare but not unheard of. My consultant said that in her time- she only knew of one person whose hair did not return-so it is rare.

    One thing that happened with me, that I did not expect is that although I did shed some hair with each cycle- I also had regrowth during each cycle. 

    Good Luck. I found the Paxman site and their social media helpful.

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi DD

    I was still shedding after chemo finished but regrowth happened quickly. You should notice a real difference over the next month. I found lots of conditioner helped- I used a leave in one- children's farm- from tescos- although I think you can get in other shops. I continued with the paxman recommended hair advice for a few more months and that will help

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you , I'll give the conditioner a try and look at the Paxman site again

  • I am on the harshest of chemo AC-T for hair and am really glad I have cold capped. I have had 6 of 8 treatments and 12 weeks in I have hair and even though I have lost a lot and is a lot thinner I can still get away without a hat. It has minimised the trauma of hair loss. I still don’t know if I will keep enough but has really helped me feel better having it for this long. Best of luck 

  • I have been through chemo twice. I tried cold capping the first session the first time, but lost so much hair it didn’t seem worth continuing. Clipping it short left me feeling in control. The second time around, I didn’t bother trying again. It grew back really well both times.