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Cold Caps Users Past and Present, to Save Hair

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Comments

  • estelalorca
    estelalorca Member Posts: 26
    edited April 2016

    7of9 - I highly recommend getting a silk/satin pillowcase. I've been using them even prior to treatment as it extended blowdry's/styles. As a stylist, I have become accustom to not washing my hair everyday. I'm currently washing my hair 1/week while I cold cap so the pillowcases again have helped control the "bedhead" look and reduces friction on our hairs.

    Honestly I think they're great, but that's just my opinion. Drink lots of fluids, I hope you feel better soon. Good luck!

    Hangin in there....

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    I 2nd the silk pillow cases. I bought some 100% silk ones on Amazon and I love them! I'll keep using them after I'm done with chemo. Your hair has a lot less friction on them and your hair looks better, longer. Just let them air dry after you wash them. I've noticed my scalp has adjusted to the less washing schedule. I don't have the crack ho look anymore. Even if I go 4 days!

  • anniekaja11
    anniekaja11 Member Posts: 116
    edited April 2016

    Hi everyone,

    I'm starting TCH (6 rounds) on Thursday and got the Arctic Cold Caps. We did the training today and I'm just a bit freaked out about how uncomfortable they are under my chin - and can I tolerate that for so long. I guess I'm just needing some encouragement - I'm second guessing myself and thinking I should have just gone with a wig. Part of me just wants to be in control of it and I'm not very excited about all the hair restrictions and how I will look with the shedding.


  • PatinMN
    PatinMN Member Posts: 784
    edited April 2016

    Annie, I used the Penguin caps so I'm not familiar with the chin straps on Elastogels (which I think is the brand of cold cap used by Arctic). But I put a folded-up hankie between the chin strap and my chin, to make it more comfortable. Only you can decide if the cold caps are worth the trouble--for me, it was a definite yes

  • anniekaja11
    anniekaja11 Member Posts: 116
    edited April 2016

    Thanks PatinNM. Appreciate the response. Maybe we had the straps too tight when we were practicing. I did have a headband under the straps - it was more the pressure - it was so tight I couldn't really talk or move my chin - too tight? I'm sure I'll feel a lot better after Round 1 is finished. I'm anxious about everything.


    A

  • 7of9
    7of9 Member Posts: 474
    edited April 2016

    Get a script for attivan and pop a pain pill (let doctor know) between that stuff and the IV benadryl you'll be like ....chin strap? What chin strap? Though like me I couldn't really say anything my husband put it on so darn tight. I'm day 6 past first treatment...cautiously optimistic.

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    Annie,

    I'm currently using elastogels and mine came with an additional strap that tightens in 3 different areas on your head. The chin strap is really annoying to me, too. I find myself holding it down with my hand so I can talk and eat. I think it really does need to be pretty tight to make sure the cap is really next to your skin. It is a long day and it just depends how bad you want to keep your hair. I think most people get used to the extra hair care this requires. I'm really glad I did it. I'm only halfway finished and maybe I'll still go bald but I haven't yet. You can always try it and quit later if you hate it, but you can't really change your mind and start cold capping once you've done a chemo session.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    I used Penguin. Geralyn told me to make the chin strap super tight until I got all the straps around the head super tight. THEN, she said I could loosen the chin strap some, and if I nodded my head back and forth and the cap didn't move, I could let the chin strap be looser for comfort for the rest of that cap time. Then rinse and repeat with each cap.

    Not sure if this is applicable to Elastogels, as I don't know if they have as good of a fit as Penguin. So, proceed at your own risk...

  • 7of9
    7of9 Member Posts: 474
    edited April 2016

    I also put several hair bands over my cap (elastogels don't have all the criss cross straps that the penguins do). I have a big noggin so the elastogel is a tight fit which I hear is good/what you want.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    Oh yeah that reminds me - I used a type of ace bandage to help hold the cap closer to my head - that was a heck of a lot more comfortable than that cold hard strap tight against my chin.

  • zinny
    zinny Member Posts: 169
    edited April 2016

    I used fabric under the chin strap the first two times - then ditched the chin strap as my head felt really cold and it seemed too much.

  • anniekaja11
    anniekaja11 Member Posts: 116
    edited April 2016

    Thanks everyone! 7/9 you cracked me up! I remembered I'm born and raised in Chicago so I can do 25 below on my head.

    I'm feeling better about it and Arctic Cold Caps comes with a swim cap to put over the top of the cap which tightened it. So I'll keep it as tight as I can and take some breaks with sliding my fingers under it or moving it around. I like the idea about the ace bandage -

    What about covering the ears? What did you all do? Arctic Cold Caps gave me a system using pantyliners but I'm thinking I can invest something better.

    My hubby has gotten it all setup with the dry ice and the caps are currently 50 below! Thanks so much for the encouragement.

    We couldn't find any electric blankets for sale but I was able to score two large heating pads and I have a down coat so that will work.

    Annie

  • phaila
    phaila Member Posts: 177
    edited April 2016

    Still so scared that day 17 after chemo 2 will be the end of it all. When you all had your 2nd chemo did you have a shed equal to your first shed? Like I know my TC shed came a few days later then regular TC sheds. Just wondering if things stay the same with each treatment? Either way, whether my hair falls all the way off or not, I can't wait for the day when I can abuse my hair with a rough brushing without worrying that it will make me bald! I want to just wash and wash without having to be all gentle to it. Use silky perfumy shampoos and lots of conditioner!

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited April 2016

    Phalia, I know how how you feel! I wasn't really able to relax and believe the capping was working until right before my 3rd treatment. if you still have hair at this point you should be fine. I only had the one big shed after the first TC. I still shed throughout treatment and afterwards, but nothing like that one time. Hang in there!

  • heidi16
    heidi16 Member Posts: 44
    edited April 2016

    Questions to all cold cap users: Do you need special cryogenic gloves to handle the caps in dry ice? Also, do you just put the caps on top of the dry ice in the cooler or "bury" them in the ice? Thanks


  • zinny
    zinny Member Posts: 169
    edited April 2016

    heavy duty work gloves, and yes, buried the ice - though the cold sinks, so the coldest part of the cooler will be at the bottom.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2016

    Heavy duty gloves (ask you dry ice dealer if you aren't sure). The caps do not go directly on the dry ice. You need to keep them in their boxes to protect them from getting too cold. But you do bury them in the dry ice in layers in their boxes. I got slabs of dry ice that they wrapped in brown paper to make it easier to move sections of the ice as you rotate the boxes during treatment day. Most recently used get rotated to the bottom of the box, rotate next ones up, etc. We numbered the boxes so that we could keep the order of them straight. So, in this way, the used, warmer caps get put on the bottom and as you cycle through caps they slowly rise up to the top and have time to get cold again for next reuse.

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited April 2016

    Hi all.

    I haven't been on in a while busy with life and 3 young boys. I'm now 9 months PFC and back to my old routines and I have hair of various lengths growing all over my head. Just wanted to wish all of you going through chemo or about to start it the best of luck with everything and remember it will be over before you know it. Xx

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited April 2016

    Thanks for the encouragement Aussie-girl! And congrats on being 9 months PFC!

    I just finished #8 Of 12 Taxol/Herceptin. Still no significant hair loss to speak of. Rolling right along!!

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited April 2016

    That's great news Nolagirl keep going, you got this

  • 7of9
    7of9 Member Posts: 474
    edited April 2016

    Aussie and Nola girl.. Thanks for the encouraging updates...

  • hikerchic
    hikerchic Member Posts: 25
    edited April 2016

    I'm now an officially now a "mad capper"! My husband ordered six ElastoGel caps, so am hoping that is enough. Definitely worth giving a try.

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    Hikerchic they are working for me. I have 6 so you should be fine. As long as you have enough dry ice by the time you use the 1st cap again it should be cold enough. My 3rd chemo would be this Thursday but I'm running in a half marathon Sunday so I'm delaying it a week. My point is I have a ton of hair left. Just a small bald spot on top that covers really easy. What chemodrugs are you getting?

  • hikerchic
    hikerchic Member Posts: 25
    edited April 2016

    Runner...that is awesome! A half marathon AND hair!!!! Woohoo!!! There is hope!!

    I am going to be doing AC+5-FU on a Tuesday/Thursday schedule every three weeks for six cycles. We have to time everything just right as I am preggo.

  • zinny
    zinny Member Posts: 169
    edited April 2016

    Runner70, holy shit - a half marathon midchemo - amazing. Hope it is fantastic.

    I did my first run since January this week, and decided that my new mantra is run the downhills and walk the up. Haha! Good mantra for life, really. And run the uphills too, when you feel like it!

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited April 2016

    It's been six weeks since my final treatment of TC. I'm still shedding a bit, but the cold capping worked!

    For those of you still in the midst of freezer head misery, don't give up!

    Does anyone have any tips for when I can cut, color, and wash my hair normally?

    I'm still babying it and only wash once a week. It's thin, ut not horribly so.

  • jgab
    jgab Member Posts: 24
    edited April 2016

    half marathon sounds like a dream! How are you so tough??? I haven't even worked out since my diagnosis...all my muscles are gone:

    I am one week post my first tchp treatment. When does the shedding begin? I am trying not to focus on the fear, but I know days 14-21 are scary! I just think if I keep some of my hair I will be fortunate. My next treatment is two weeks from today and my sister and husband will be on their own to cap me. I am worried they will have forgotten everything the capper taught them!!!😥🙏

  • jc254
    jc254 Member Posts: 332
    edited April 2016

    Did anyone else notice the banner ads on this site for Penguin Cold Caps? It's about time they started their own marketing campaign instead of leaving it to us to spread the word.

    Happy

  • phaila
    phaila Member Posts: 177
    edited April 2016

    for me the days started later then people not using cold caps. Days 17-29 were shedding nightmares.

    I've found that the best way to describe the hair I have left (probably 45% or less) is its like a veil. It's a veil of the hair I used to have, but I'm not bald, which was the whole point right?Well I'm not bald YET

  • 7of9
    7of9 Member Posts: 474
    edited April 2016

    Day 10 post first chemo. Scalp has felt tingly on and off, now it's a little itchy and maybe a little more hair in the brush this morning but I only brush once a day then just run finger through lightly as touch ups needed. Have had one cool shower on hair (I shower almost daily without washing hair) and I've dunked it gently in the tub at the end of lavender bath. I had 3 elastegels, I am ordering a 4th. Husband is game on it with his laser thermometer. Now I just need to get my colon in line for treatment in a week and a half then I will be 50% done with my 4 taxotere.

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