Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Cold Caps Users Past and Present, to Save Hair

1…430431433435436…717

Comments

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    I'm starting my chemo the day after tomorrow and at this point I'm not sure what I am most nervous about - the chemo itself of the cold caps.

    I used to wash my hair every day. Since my treatment is on Tuesday, I washed my hair yesterday (Satruday), did use styling products so it looked not so great yesterday already. This morning it's a hot greasy mess. How will I last till Friday? Can I at least please, please, wash my bangs? Right now I have a couple or greasy clumps stuck to my forehead, and the rest of the hair is flat and mostly greasy too.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited March 2015

    Good morning BB: I know it seems weird not to be able to do anything with your hair but you will get used to it as time goes on. I wouldn't do anything with your hair at this point. The first few weeks I was ready to scream. I am now three treatments in and one to go and I am surprisingly getting used to my hair. The first two weeks it was very greasy and then it got to be a little better. It is on the dry side now but not horrible. It is normal to be nervous the first time. Once you get through your first treatment and get all the cold capping craziness worked out, each treatment will get easier. I focused more on the cold caps than anything else. You won't even realize how quickly your treatment will go by when doing the cold caps. It will be fine. Trust me. If you feel like you're doing something wrong, don't panic. We have all been there and kept our hair. Just make sure you keep the black bands tight around your neck and ears .... everything else will fall into place. Stay strong. ...you've got this :) ♡ Kim

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    my hair was as greasy as glue the first two weeks. Totally went away.

  • suladog
    suladog Member Posts: 837
    edited March 2015

    BBwithBC45,

    I'm having the same protocol as you. I have taxol followed by herceptin 1x a week for 12 weeks, this week will be week 6 for me. This sounds nuts but Instarted counting what hairs normally come out in the shower drain before I started, I'm just about halfway through and I've not lost any more hair than than I normally would. In short the cold caps have worked so far so good. My hair is unchanged. I can hardly believe it.

    My treatment day is Friday so I wash my hair in cold water Thursday evening, I know this is not what PCC says but it's what I do. I wash my hair again in cold water on Mondays. I use a bit of deva no poo, staying away from the roots and washing very gently, then I use a bit of Deva one condition on the ends and rinse that out too.

    I let my hair dry naturally with a bit of styling gel applied on the ends, along with some styling cream. I use deva products because they are what I was using before all this and they are sulfate, paraben, and silicone free.

    I'm not recommending you do as I do, as my hair is naturally very dry and curly but the nurses and the doctors have told me that in general taxol and herceptin work well with the caps. Just follow the rules as to length of time for wearing the caps and see how it goes. I have felt a bit freer to follow a more normal..... Though not totally normal hair care routine. There are a lot of products I'm not using ... Mainly my hair coloring but it feels pretty natural and goodto be able to wash my hair twice a week again.


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    so here's a stupid question - for some reason I think they told me that Herceptin would be first, and Taxol would follow. I don't need cold caps for Herceptin, correct? Just for Taxol?

    I think they said first time Herceptin would be 90 minutes, so I would start cold capping 40 minutes into Herceptin, when there are still 50 minutes of it left?

    Suladog - you are getting Taxol first, and only after this comes Herceptin

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2015

    BB, I was told that my first chemo would be herceptin first followed by taxol, but for the other 11 infusions I could do taxol first so that the herceptin time could be part of my 4 hour post-chemo capping time. I asked if there was a reason why herceptin had to be first for the first chemo and no one had a good reason - just that it was standard practice. I managed to convince the chemo nurse to go against doctors orders and do taxol first for that first infusion (and all the others). Herceptin first just would make for a longer day for you.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    Thank you, Patin.

    In case that they insist on Herceptin first - i do not need the cold caps for Herceptin, correct?

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2015

    BB- right, you don't need the caps for herceptin. Goodluck!

  • tricia2222
    tricia2222 Member Posts: 2
    edited March 2015

    Hi there, it's my first time to post. I guess I'm getting used to the new normal (not), but I'm surviving. Got through mx fine and was back to showing my horses within 4 weeks. Felt like I was on vacation waiting for Oncotype Dx score to return. Of course I can NEVER get off the fence about anything. My score was a 21. So for the sake of wanting to show horses for another 40 years I picked the big C. Nothing puts the C in cancer like chemo :( . Treatment 1 went ok. Normal symptoms, strange pains blah, blah, blah. I am using the cold caps and I am 9 days post infusion. Super worried about the hair. Seems alot is falling out. Its itchy too, but that is normal for me anyhow trying not to scratch.

  • MIMomma1
    MIMomma1 Member Posts: 49
    edited March 2015

    Okay, my new creedo is "Trust the collective wisdom of the ladies who cap!". You all said the shedding would let up. You all said not to worry. You all said not to stress. Well, not surprisingly, you were all right! A week after the start of Hairagetton (or would it be Armohairgone?!), the shedding has finally begun to lighten and I am back to almost normal daily hair loss! I'm a little thin on top along my part line and at my temple over my left ear, but I have flipped my part to the opposite side and that seems to cover a world of sins. I suspect those two areas were more damaged due to years of exposure to the sun (I'm blond and am easily sunbleached). So, I will now and forever forth trust what you all tell me! You don't happen to have any investment advice or what to do with an overdramatic 12-year-old daughter do you?! Just kidding...well maybe not on the daughter. Thanks again everyone. Who knew normal hair could make you so happy!?

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

    LOL MIMomma! Glad the shedding has slowed!

    Here you go: Buy low, sell high. :)


    And tricia - welcome to our wonderful support group of cold cappers!

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

    Oh and save all of those medical receipts for taxes and HSA!!!!! (This is a hard thing to think about when overwhelmed with treatment.) I speak the truth...going through mounds of paperwork from 4 years of medical expenses as we speak. Fun. Not! But I'm glad I saved them!

    And one thing I just learned...we don't qualify for federal itemized medical deductions, but we DO for state! Wish I would have known that - would have saved on state taxes for 3 years...but you can bet I'm gonna apply it to 2014 state taxes now that I have my head clear enough to have realized this.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    I'm at my first chemo today, waiting for my drugs, cold caps sitting in the coolers. Herceptin is first, then the premeds, and Taxol will be last.

    So nervous how the cold capping will go.

  • DaniellaD
    DaniellaD Member Posts: 228
    edited March 2015

    Good luck BB! Tell your doctors for next infusion you would like herceptin last so at least your capping is more efficient.

    MiMomma - someone said it here once, and I'm paraphrasing bc I don't remeber exactly but it was something like "you're no special snowflake. The caps work because they do." So just trust that they work.

  • tricia2222
    tricia2222 Member Posts: 2
    edited March 2015

    Here is my hair now. Before any real shedding has started...


    My part

    image

    image

    Hopefully it will hang on!

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    good luck Tricia! Those pics are good to have as a comparison too. Hang in there.



    I am hoping my last chemo, and cold cap day, is tomorrow. I've been at this since August, and am so ready to be done with this phase. Fingers crossed my WBC are high enough for chemo.

  • pch
    pch Member Posts: 185
    edited March 2015

    Hello ladies! So you've all suggested both TouchBack and ColorMark for root touchup. This is during chemo, right? I have an Eddie Munster streak that's making me feel very sad (so named by my older brother in a moment of older brotherness). Which touchup works best (even though they both have alcohol in them and that's ok, right)?


    And glad that you're able to relax a little MIMomma. This is pretty much of a roller coaster, but we're like elephants. You know, in the best possible way. Protect the herd. The herd knows all. (And I'm like the opposite of a joiner, so that's huge for me.)


    Fingers crossed for you here too, Gatomal. Go, go, go.


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    I'm not sure we're doing it right image

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    Got he second one on, wondering if it's too cold

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    you look like u should. Make sure it's toucing you scalp everywhere and tight around hairline. Not sure if how cold is too cold, the forth one should feel better. Then it's about the same for the rest of the day. Take an Ativan or Tylenol or pain med if u need it.

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    good for you girl! You can do it! We r pulling for u!

  • suladog
    suladog Member Posts: 837
    edited March 2015

    pch,

    Just want to another color combo,., that's Style Edit which some cappers have recommended.i found it in my local beauty supply places, for about 19 bucks. It's a spray and good to hit where the magic marker stuff doesn't., and where I can't see. God knows what color combos I've got going on up there, but I'm covering grey and I've got hair. Actually the T/H combo works really well with the caps. My mo does the herceptin last and slowly which makes the capping time easier, so at least while you're sitting there getting infused something productive (hair wise)is going on

  • suladog
    suladog Member Posts: 837
    edited March 2015

    BBwithbc45,

    My husband bought an infrared thermometer on Amazon for 15 bucks. He points it at the caps as they come out of the medical freezer so they are exactly at the temp they're supposed to be. Sometimes they're too cold beyond what PCC recommends. I got a frostbite spot on my head the first time we CC after he started using the thermometer no problems

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2015

    BB - for some reason my second cap always felt the coldest of all.  Maybe you're experiencing the same thing. 

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    I envy those of you who have the freezers. Having trouble getting consistent temp with dry ice. The fourth cap is terribly cold.

  • jc254
    jc254 Member Posts: 332
    edited March 2015

    BB, probably too late for today, but you should take the next cap out of the cooler about 10 minutes before a cap change and check the temperature. If it's too cold, knead the cap and let it sit out for a little. If not cold enough, lay the cap directly on the dry ice- it will get colder quickly. Only do this if your dry ice is wrapped in bags or else you'll damage the cap. Sure hope you took pain meds before the first cap. I found the first one to be brutal even though I took ativan and tylenol. By the second cap my scalp was numb and it wasn't that bad.

  • suladog
    suladog Member Posts: 837
    edited March 2015

    Looks right to me!

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited March 2015

    BB, I'm sure it's been a long, cold day for you. So great to see you posting. Caps looked right, great work!

    Have faith they work and take good care of yourself. Hoping you will have minimal symptoms. Drink lots of water!

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    Dear Ladies,

    I'm exhausted tonight. I'll write about my experiences tomorrow. It was a long day and I'm glad it's behind me.

    BB

  • RainDew
    RainDew Member Posts: 228
    edited March 2015

    cheering you on from the sidelines BB!!

    :-)

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.