Forum Discussion

Kat09's avatar
Kat09
Member
9 years ago

Cold Caps

I started my 1st AC treatment on the 5th Jan and was pretty much told by my oncologist to use the cold caps. She stated that they didn't work for everyone 50/50 but they were worth a try. I found the cold cap not to be an issue and warm blankets definitely helped. I have been only washing my hair every 4 days in tepid/coolish water since and using a very gentle organic shampoo and conditioner. If I do any styling at all it's on a cool shot with my hairdryer and very quickly. On Friday, day 16 and for the last couple of days I have noticed that my hair is thinning a little when I brush it ( something I do as little as possible ) but is doing so evenly at the moment. I am doing the cold caps not for a vanity thing but probably more so for a recovery stand point, I was told that your hair grows back more quickly once Chemo is finished. I did have a teary day yesterday as it is confronting thinking that your hair may be gone in the morning, but I guess a lot of you have faced that day and moved on as will I. If I do lose my hair, do any of you have any advice as to weather or not to continue with the cold caps, I do know that Dak2 ( di ) mentioned that her hair initially thinned at the top and sticking with the cold caps helped with regrowth in that spot. I am posting this as I have found that there isn't a lot of 'girly' advice out there regarding the use of cold caps. I guess not everyone has the opportunity to have them offered so I am lucky in that regard. My Chemo regime is AC x 4 over 12 weeks then Taxol and Herceptin weekly x 12 weeks so I guess my hair or whatever remains will definitely test the cold caps.

scalp-cooling
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Shaylee I'm so sorry to hear how it is going, I totally agree it is traumatic losing your hair, I think too after having some friends go through using cold cap and they did struggle and still had to use caps or headwear. I know for me personally, I would have found that more traumatic than being in control when I shaved my head once it started to fall. Its so very personal, and I totally get it, if I was told cold cap would 100% work for me I would have done it honestly, but to go through the thinning trying to manage it, I know I couldnt have done it when I was so ill on Chemo. All I can say is, its what YOU feel deep in you, what you want to do, nobody else, maybe hang in for a little while longer see if it stablizes. I know its so hard! Flip side, my profile pic is 1yr post chemo and I had long beautiful blonde hair it was devastating, but I lived with it and focused on it would come back and it sure has, plus I had beautiful wigs cut into the same shape I had, nobody could tell.  Big Hugs xoxoxo Melinda 
  • Shaylls's avatar
    Shaylls
    Member
    9 years ago
    Hi Kat09. I'm going through the same treatment as you. My 2nd treatment is Monday. Our story with the cold caps sounds the same. I've had a really down week as hair has been coming out a lot. I have been trying to decide whether to persevere or not. I have the thinning all over and it's pretty constant. Testing to wash only every few days Ali. The place I'm having chemo told me to cuts my long hair to above shoulders so it doesn't knot as much which I did. That in itself was extremely traumatic. Now it's coming out lots I don't know what to do. I know in the scheme of things it's only hair and will grow back if it goes more and I decide to shave it but it's such a huge thing mentally. I have always lacked self esteem and this whole thing has really rocked that more. Having lost a breast I can hide but once my hair goes that's it. 
    Trying to decide myself what to do before Monday. The cold cap made me cry in the first 20 minutes but then I got past that. 
    Its tough figuring it all out. 
    Hope your 2nd treatment goes ok today.  Right behind you with mine. Keep us posted where your at xxx
    Shaylee

  • Kat09's avatar
    Kat09
    Member
    9 years ago
    My hair is still thinning but evenly and there are no patches as yet, a pony tail does help. I am hoping that my 2nd treatment on Friday helps slow the thinning process but like you said Mel, I'll just go with my instincts after that. Thanks for your advice Angie as my treatment schedule is the same as yours so it was great to hear how you went.
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Kat I think continue to trust your instincts on what feels right for you. My Oncologist said if I was doing purely Taxol Cold Capping would most likely be ok and work but he said for FEC or AC he didn recommend it that it didnt work to the point patients were happy with. I also have 2 friends who used it, they thinned right through the top had to wear hats all the time, but once treatment finished it did grow back. Its super personal, I didnt like losing my long blonde hair, but for me I was happy to lose every hair on my body LOL x
  • angiesg's avatar
    angiesg
    Member
    9 years ago
    I agree they are not the most pleasant experience but they were well worth it for me. I did not have AC but I had 12 weeks of taxol and 1 year of herceptin.

    Yes my hair thinned but I was the only one that noticed, nobody knew I was having chemo.  The hardest thing for me was not being able to style, color etc. I only washed once a week, never used a hairdryer for at least 4-5 months.

    For me cold caps kept my sense of normality during the whole experience. My eyebrows did thin a lot and eyelashes too, but they  thickened up very quickly once chemo was finished.

    Best of luck with it, I think it's worth persevering with it, even when hair loss begins as it does slow down and then once finished, it did not take long for my hair to look like it did before.
  • primek's avatar
    primek
    Member
    9 years ago
    Just wanted to add ...I didnt use cold caps but I had ACT-H chemo. ..and my hair started growing back on taxol and within 3 weeks of finishing taxol I had enough to stop wearing head covers anyway. I doubt it comes back quicker. ..but I did use a hair regrowth product by L'Oréal once chemo was finished and I believe it really did help. 5 months on and 2 haircuts required already to give it style, about to have a 3rd.
  • Kat09's avatar
    Kat09
    Member
    9 years ago

    Thanks girls, I appreciate you taking the time to share how things went for you. I am going to preserve with the cold caps and see how it all goes. My hairdresser has had other clients that used the caps and they lost about 30% of their hair but it did grow back faster once treatment stopped. I had thought of trimming my hair into a shorter style but was advised by one of the nurses that it is sometimes better to leave it a little longer so that you can pull it up and cover thinning areas, again I'll see how this goes. I have a beautiful wig at the ready and some great hats and scarves.

    Kat x

  • dak2's avatar
    dak2
    Member
    9 years ago
    Hi kat09, I'm back again...glad you managed the cold cap, for me it was definitely worthwhile, not pleasant but doable    I'm on tc chemo x 4, 3 weekly,  (last one tomorrow) which I'm told is the harshest for hair loss, as mentioned, in round 1 week 3 was when I lost approx 50-60% of my hair which was soo disheartening, decided to percevere with the cold cap round two, week one, still lost strands of hair which slowly stopped shedding.   Round three I now have baby hair regrowth which us fantastic, I still have my eyebrows and eyelashes.  To help my hair I only comb it with an wide tooth (afro) comb and use natural shampoo for sensitive skin  (grahams) which my husband bought from a health food store for me whilst having chemo :), the shampoo is so soothing on the scalp (for me anyway).   I would definitely perserve with the cold cap for at least another round and see how you go, talk to the nurses as they can offer good advice.  Good luck hope it all goes well for you...cheers di
  • LibbyB's avatar
    LibbyB
    Member
    9 years ago
    Hi Kat09,
    i also used the cold cap of my treatment. I had 4xAC adnd 12xpaclitaxol/carboplatin.
    i must admit I found it pretty gruelling and dreading fronting up week after week during the weekly cycles. I took in an iPad to listen to music or watch Tv/movie to zone out.
    but I was very lucky and managed to keep to majority of my hair. I had a little bit of thinning and it did not look healthy. But I found it really helped my self esteem and liked the fact that I could walk down the street without anyone knowing what I was going through. I did lose my eyebrows and eyelashes towards the end. I am now 5 months post chemo and my hair is looking healthy and shiny! Eyebrow and eyelashes are back!!
    id definitely persevere. I also heard that even if you lose some it does grow back faster. I did have a few ladies sitting near me during treatment who stopped as they had lost the majority of their hair. I was obviously lucky that it worked and I also found the cap was a snug fit which may of helped!! Good luck and let me know if I can help in any way - Libby xx 
  • primek's avatar
    primek
    Member
    9 years ago
    Glad you could tolerate them. I didn't have an option to try them. You will probably just have to see how it goes if it's worth continuing I imagine. Maybe a shorter cut might make it easier with the hair fall...just a thought.

    Hope it goes well for you. Kath x