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Cold Caps Users Past and Present, to Save Hair

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Comments

  • CurlyG23
    CurlyG23 Member Posts: 25
    edited January 2015

    Warrior Woman, Your hair looks awesome! So healthy looking, thanks for sharing...It must feel great to be 10 months out.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2015

    Can someone give me a review of the Nioxin 4 system again? I have a friend who is experiencing thinning hair on an AI and was wondering if I should recommend it to her (she did not do cold caps).

  • hope49
    hope49 Member Posts: 239
    edited January 2015

    KFB, you look great! It seems like you were just starting and here you are now crossing the finish line. So happy that you had success with the Elastogels - that will help a lot of others in the future.

    WWoman, your hair looks so healthy and shiny :) I know you had some moments of doubt along the way, so thanks for continuing to share your story and pictures, I know that really helps the new cappers.

    Gatomal, your hubby is a trooper! I could never get mine to try one on, although I think just handling them he knew he didn't even want to try. :)

  • suladog
    suladog Member Posts: 837
    edited January 2015

    wearing my PCC during my first round of chemo, shit that stuff hurts!!!image

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Suladog - only the first two caps hurt then you'll feel nothing. Good luck. You look marvelous :) I just did Round #2 yesterday. ... it gets easier and less crazy. ♡ Kim

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited January 2015

    JC - Ha Ha Ha Ha. Yes, I was a skeptic. I thought this entire thread was a scam to trick me out of money... An elaborate scheme and you were the biggest plant. I even contacted the BCO moderators to make certain this was for real. Fortunately, enough women posted their stories and convinced me in time.

    Suladog - Ah yes. We all need that one beautiful capping pic as a souvenir.

    Curly - The further out we get the better it feels. As long as we're healthy it get better and better.

    Dancetrance - After Hortense suggested the Nioxin 4 a number of times I finally went to Ulta to talk with the hair consultant. It turns out she had chemo too and get it. Nioxin has diverent numbered levels and 4 seems to be the level that is recommended for most of us. It is for fine, chemically treated and obviously thinning hair. I purchased the full kit to start - shampoo, conditioner and leave in scalp treatment. After one use my husband and I were amazed by the difference it makes. I don't think it is specifically designed for chemo chicks and hopefully helps everyone who wants more hair. I think it work by cleaning and unclogging the pores of the scalp. We can all use that. :)

  • mdg
    mdg Member Posts: 1,468
    edited January 2015


    WW laughing out loud!  I remember you posting your conspiracy theory!  Ha!  Hair is looking FABULOUS!  

  • pch
    pch Member Posts: 185
    edited January 2015

    Warrior Woman, you fine thing! Wow. I am 24 days PFIRSTC, and you are my muse right now. Thank god for you ladies and (esp. you GPK), because this would be a total freakout without you. This first big shed would have me in a straitjacket without your stories. I'd be pulling my hair out by now. Oh wait. I already am. Anyway, thanks girlios. You are keeping me sane (ish).

  • pch
    pch Member Posts: 185
    edited January 2015

    Hey MDG. Your words of wisdom are also right there, helping me through. But I gotta think I'd be bald by now (3 days past 2nd infusion) right?


  • suladog
    suladog Member Posts: 837
    edited January 2015

    golden paws,

    Yes I think all the caps hurt for the first few minutes the nothing. I'm so worried we're doing something wrong and it's not going to work. All the photos are inspiring... I just very paranoid and worried my husband did't get them on righ

  • Gatomal
    Gatomal Member Posts: 418
    edited January 2015

    suladog, good going and good luck! It is cold, some days hurt more than others. I find that when my blood counts are down, I am colder. I often get those bags ( the nurses break them, the chemicals heat up, they use them to pop up your veins for an IV) break a few, and put the, in my bra or under my arms to help give my some extra warmth, since no electric blankets are allowed at my infusion center, only downstairs after when I have the cap on for hours.

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Gatomal,

    I get to use a plug in robe at my place which helps a lot keeping me warm. I just really want those caps to work and when I see all of you succeeding it makes me feel so much bette

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2015

    WW, thanks so much for your report on Nioxin 4! I have passed the info onto my friend.

  • incognitomom
    incognitomom Member Posts: 80
    edited February 2015

    Congrats on being done Killerfunbags! I am so glad there is another option that works. Looking great WW!

  • suladog
    suladog Member Posts: 837
    edited February 2015

    Dancetrancer, and anyone else out there that can help... I had my first PCC yesterday. The caps were very cold and this afternoon I discovered a crusty scab in an area that got exposed to the cold cap,on the part line. The scab fell off but is that frost bite?. I guess my hair got tangled up and the part got messed up changing the caps so often. I did cover my part with gauze as PCC said but I don't think I did it correctly. Any of you ladies know what to do? My scalp was very red after wearing the cap for so long. Maybe I need more gauze? I hope this hasn't screwed my hair up. Help! Any advice welcome

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2015

    Suladog - I never heard of covering the part line with gauze. I was told to change my part with every cap change, and that worked for me. If your scab fell off without taking any hair with it, that's a good sign! But I would try changing your part instead of gauze next time.

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited February 2015

    Suladog - I'm with Pat. Change your part in your hair between each cap. Others have reported mild frostbite. I went to my doc when I had a bit on my forehead. There are varying degrees of frostbite and it can be very dangerous...causing your skin to die. With my mild case, it was a bit darker than my natural skin color and a bit crusty. She gave me an antibiotic ointment and told me not to pick at it. It fully healed in about a week. Gauze on your part can help prevent frostbite if it happened despite changing your part.

  • MIMomma1
    MIMomma1 Member Posts: 49
    edited February 2015

    Hi Killer...I will be going in for my first round of TC in a few days. I am also doing Elastogel Cold Caps. Like you, I've been putting together info on how to use them from the various cold cap websites. Since you had such great success, I would love it if you could pass on your method of doing the Elastogels just so I can make sure I'm not missing/forgetting anything. And what hair products did you use while going through treatment? Also, any thoughts/suggestions you (or anyone else for that matter) may have on dealing with the SE of TC would be welcome as well.

    Also, I see there has been a thread on Nioxin. Has anybody tried to use while going through chemo or is it just for after?

    Thanks so much!

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited February 2015

    Ok girls. .. Day 24 (2 treatments down, 2 to go) but holy crap. I'm shedding a ton of hair (anyway that's what it looks like). I know Warriorwoman has encouraged me to move forward....It will be fine. But yikes. This is scary. I did my first washing since my second treatment. When I picked through my hair, it seemed that a ton of hair was coming out- not clumps just shedding. I guess this is a normal shed but I'm freaking. From what I have read it sounds like a big shed can happen about this time. I'm hoping it gives up a little bit. Help girls..... I need some more proof that this is going to work... i know, worrying causes alopecia. Ugh ♡ Kim

  • jc254
    jc254 Member Posts: 332
    edited February 2015

    Perfectly normal Kim. Your hair is most likely shedding around/behind your ears the most. Remember, some women have one or two big sheds during chemo but shedding tapers off soon after chemo ends. Others shed very lightly during chemo but continue to shed for months post chemo. You might be in the first group- both are normal. Take a deep breath and don't panic. Right now you would be bald if not for the caps- they ARE working.

  • jenifere
    jenifere Member Posts: 94
    edited February 2015

    imageimage

    Hair 8 weeks PFC. Trimming an inch tomorrow. Washed once with Nioxin4, noticed a difference immediately. I did not use the conditioner, still using a Kenra spray leave in conditioner to get out tangles. I miss my regular color weaves, but all in all not bad after 6 months.

  • roby7
    roby7 Member Posts: 16
    edited February 2015

    Hi ladies,

    My first taxotere and cytoxon chemo session was 1/15 I used penguin cold caps one hour before and four hours after. My hair was ok but this week especially today I notice shedding it is itchy and every time I touched I come with 1-5 hair also it is falling on my clothes is it normal ??? Also itchy scalp what should I do ?? My second session will be on next Thursday best wishes to u all

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited February 2015

    Roby - yes, just finished round #2 this past Thursday. Big shed. Completely normal from what others say but scary.

    Hey girls .... washed hair yesterday and woke up w a big mat behind left ear. Don't think I combed it out good enough.. scared. Ugh. I guess I'll get the corn starch. Wish me luck. Thnx Hortese :). Praying it doesn't all fall out. Who said this was going to be EASY?! 😨 ♡ Kim

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited February 2015

    Roby - You're right on schedule. :)

  • rleepac
    rleepac Member Posts: 193
    edited February 2015

    This might have been asked already but I didn't read through all 425 pages of posts so bear with me...I have Raynaud's Disease where my fingers, toes, and bottom of my feet lose sensation and then when it comes back it it incredibly painful as a result of cold exposure. My BS said chemo is definitely in my future but she's waiting to hear from the multidisciplinary tumor board to see if it is before or after surgery so I won't know for another 2 weeks what comes first.

    Anyway, she mentioned that they use cold caps to prevent hair loss so I thought it was great! Until I realized that I don't do well with cold anything LoL. Anyone else have Raynaud's and do ok with cold caps?

  • MIMomma1
    MIMomma1 Member Posts: 49
    edited February 2015

    Goldenpaws--How have the SEs been with TC? I'll be starting 4 rounds of it soon and am trying to decide how much I'll need to cut back on stuff...especially with activities I do with the kids (girl scouts, shuttling them to homework club, etc). Personally, I'd like to crawl into a hole and hide until this is all done, but I also want to keep things as normal as possible for the kids. What has been the most difficult part of chemo for you so far?

    Also, can anyone out there give me advice on what hair products are good to use? I know I need to look for as gentle as possible, but I walk in a store and there are just so many organic and natural products that I just get overwhelmed (of course, just about everything overwhelms me right now). I've got pretty much all my other supplies to do the cold capping and get through the chemo but the shampoo/conditioner and possibly root touch up. Also, I've seen Nioxin mentioned a lot. Can that be used during treatment or just after?

    Thanks so much for all the help. I have a meeting tomorrow with my MO to get things scheduled, so I need to get my system nailed down.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited February 2015

    Hi MIMomma - i just finished my second round last Thursday (2 down, 2 to go) I've been VERY fortunate not to have many SE. The only thing that has really bothered me has been the fatigue. It usually hits me day 3 & 4 where I'm pretty much wiped out ... I have 3 kiddos (11 and 8 yr old twins) so other than the first 3 to 5 days, I've been able to continue on with everyday things. I do get the neulasta injection the day after treatment. First one, bone pain was worse than this time around. If you're getting the injection, make sure you take Claritin. Staying hydrated is most important. Rest, drink water and stay positive. ... you'll do fine :)

    Regarding hair products, I'm using Dermaorganic shampoo & conditioner. Hate the conditioner. Just doesn't work like my old stuff :( also was recommended Kenra leave in conditioner.... don't really care for that either. It just may be that my hair is just horrible right now so I'm not happy with anything ha! I haven't used any root touch up yet but need it BADLY. It was suggested I use Color Mark. there are great suggestions on here if you have time to scroll back a few pages.

    Any other questions, please let me know. Best of luck and keep us posted. ♡ Kim

  • Leslienva
    Leslienva Member Posts: 343
    edited February 2015

    Roby, try rinsing with a few capfuls of apple cider vinegar in two cups of water. If that doesn't help, you can add a capful of the vinegar to your shampoo.

    Kim, my hair mats up like that all the time. Corn starch is my new best friend

  • MIMomma1
    MIMomma1 Member Posts: 49
    edited February 2015

    Goldenpaws--Thanks so much for the advice! I, too, have three kids (12, 11 and 7) and I hope I can handle the SE as well as you have. Half way done...I'm so jealous! I figure between the chemo and rads, I should be all done by the time school is out in June. That's at least a good thing. If one has to have chemo, it might as well be in Feb. and March when it's cold and snowy and dreary and you want to hole-up anyway.

    I know everything I say has been said or thought before...but as you and everyone else here knows, being diagnosed with BC is one crazy, surreal, mind-numbing,heart-pounding, body-altering, PTSD-inducing, messed up ride. Nothing compares to it. And I have been going out of my mind the past two months with grief and worry...until I started reading these posts. In my home life, I haven't wanted to tell very many people I know about my diagnosis...for some reason I feel ashamed and I didn't want the pity or having to talk about it. But this board is different. You all know and understand. You all have given me something to focus on and hold onto. You have shown me that life is not over. That I am still the same person. And that I can get through this and move on. So thank you and all the other posters I've been reading over the past couple of weeks. Thanks for just being out there and somehow sharing this with me and making it all just a bit better.

  • KillerFunbags
    KillerFunbags Member Posts: 10
    edited February 2015

    MIMomma- there is a PM headed your way with an old post of mine about elastogels!

    Does anyone know when I could start using the Nioxin system PFC? I've seen a lot of people recommend it on here an I'm anxious to get started!

    Thanks!

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