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Cold Caps Users Past and Present, to Save Hair

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Comments

  • jstan81963
    jstan81963 Member Posts: 24
    edited November 2016

    Hey Guys,

    I am 14 weeks PFC and have an appointment to color my hair on Tuesday. I bought Daniel Field powdered hair color from the UK because it doesn't have peroxide, alcohol, and all the other crap we cant put in our hair for a while. i ended up thinning all over on my head and never had any big bald spots, i have hair growing on my legs and other places again,but i still shed a little more than a normal person. i am starting to get very nervous about the color and so many "what ifs". Anyone colored successfully??? i am so sick of being the multi colored troll!!


    Side note i had my ovaries removed last Thursday instead of the Lupron shots anyone else? How long is the pain supposed to last? Doctor said it would be "A Walk in The Park" obviously he doesn't have ovaries because it feels like i walked in the park with scary clowns who punched me in the gut many times LOL

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited November 2016

    hi everyone. I will be starting my 1st round of chemo next week nov 10th. I will be using penguin cold caps. I just can't believe I have to wear the cap 4hiyrs after my infusion. So long. That means I have to stay there and wait 4hours. I'm not looking forward to this. Any tips for using cold caps. Tips on shampoos and conditioners

  • viktoryak
    viktoryak Member Posts: 238
    edited November 2016

    Jstan, I did organic color and highlights 11 weeks past chemo. I had no problems with it. It really feels good to have normal color and take care of hair "old" way. Good luck to all!

  • jstan81963
    jstan81963 Member Posts: 24
    edited November 2016

    thanks viktoryak, i will let you know how it goes

  • Jiffrig
    Jiffrig Member Posts: 158
    edited November 2016

    Why do you have to stay there? Do you live more than a 1/2 hour away? I wore mine home and only wore them 3 hours after

  • viktoryak
    viktoryak Member Posts: 238
    edited November 2016

    Hopfull2, read my prior posts. I went home with cold caps after treatment. I live in NJ but we drove from Sloan in NY.

    Yes. it was kind of military operation but we did it.

  • javamama
    javamama Member Posts: 28
    edited November 2016

    I just ordered the Polar Cold Caps. OMG.

    I can't believe this crap. I'm scared. What if I'm the freak it doesn't work for? I love my hair. You have no idea how crazy I've been thinking I was going to lose my hair. Seriously. Am I vain? For some reason having frankenstein tits doesn't bother me NEARLY as much as thinking I'm going to lose my hair.

    Please tell me this works and talk me off the ledge.

    Also, my oncological group shows they have a freezer. But they never mentioned cold caps to me. They just gave me a brochure for wigs. What the hell?

    Also, if they aren't cooperative, where do I find the dry ice? I thought I saw something somewhere about ordering it, but I have cancer brain and have zero clue about where I've read anything or remembering anything as well.

  • meow0369
    meow0369 Member Posts: 126
    edited November 2016

    FightingTheFight, thanks for the encouragement! I do try to lighten up my thinking some good days some bad. Javamama ,totally exactly how I felt.Overwhelmed and spinning! You are not vain! My hair was like my baby and in the best shape ever long and healthy. I used Artic Cold Caps. Check w your treatment center to see if they will let you use their freezer first then google dry venders. Supermarkets do sell the blocks find the cheapest price. You may hve to break the blocks into smaller a pieces depending on the instructions they gave you. Follow the directions to ensure the caps are cold enough. Mine had to be -25 thru -30 the colder the better without getting frost bite

    These ladies here are so amazing and helpful when I needed it. I'm sure they will add in info. Hang in there

  • Myraclaire
    Myraclaire Member Posts: 18
    edited November 2016

    javamama-

    Harbor no illusions, you are having a very tough chemo regimen. You will lose some hair. You may lose a lot of hair. But it does work- you will not lose all your hair. I have round 6 coming up this week. I've lost at least 50%, while following the regimen strictly and paying for a professional (RN) capper.

    It sounds like a lot of hair loss but no one can tell except me. That doesn't mean it doesn't upset me,but ive made it through the toughest part (AC) and the end is already in sight- 31 days left but who's counting???

    It's been very stressful overall, and with the weather changing I'm especially freaked out when my scalp feels cold. But at the end of the day, I don't look sick to my kids, I don't need a wig and people who don't know I'm in treatment can't tell. Despite the cold showers, gallons of drinking water and Huge expense, I would def recommend the capping!

    Hope all goes well for you.

  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    Had first big shed today, 19 days after starting with the Dignicaps. Wasn't as traumatic as I expected because from reading here I expected it. My dilemma now is that I have a cupcakes business and I'm paranoid about a hair getting in the cupcakes. I pulled back what I could in a very loose pony tail and just trying to keep my head away from the batter. 2nd infusion is Thursday.

  • kechla
    kechla Member Posts: 181
    edited November 2016

    For those well past PFC from Taxotere and Cytoxan, how long was it before you saw hair regrowth for the hair that did fall out? How long until you felt back to normal energy wise?

  • jstan81963
    jstan81963 Member Posts: 24
    edited November 2016

    kshorten, i have a cake/cupcake/cake business also, i had to figure out my chemo schedule around my wedding cakes.i bought hair nets and used them.

    kechla, i noticed small hairs growing on my head about 2-3 weeks PFC, i am 14 weeks now and have hair growing(very well i might add) on my legs and armpits. Also every week you will get stronger and have more energy, i never though i was that tired until i look back

  • javamama
    javamama Member Posts: 28
    edited November 2016

    meow0369 and Myraclaire- thank you for your kind words and words of encouragement. Cancer's taken my boob, my plans for my empty nest plans with my hubby, my peace of mind, so much... I just don't want it taking one more thing. I hate doctors and hospitals and I have gone more in the last few months than I have my entire life. I'm constantly stressed and don't sleep well. Cancer hasn't just invaded my body, it's invaded my life. And I am forever altered. And it makes me feel all crazy out of control. Taking charge of the type of reconstruction surgery I wanted, fought for and had, taking charge of keeping my hair and fighting against this side effect that I CAN control when I'm faced with so many side effects that are not, just feeling like I am at least steering the ship even if I'm not the cpatin at this moment, makes this more bearable.

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

    kechla I am 15months PFC and I noticed new hair coming in almost straight away I finished chemo in July 2015 and by October 2015 I had new hair about 2inchs long.

  • Edu
    Edu Member Posts: 12
    edited November 2016

    Kechla, tomorrow I'm 11 weeks post chemo and 2 post radiation and I have all my hair back, eyebrows and eyelashes are still coming in. My energy is also back, however I'm stiff as a board, and have all kinds of muscle and joint pain, also some uncomfortable neuropathy. I started running again and hopefully that will take care of the stiffness...

    Javamama, you will lose hair and it will be traumatising when it starts and unbelievably stressful, but I promise... you have more hair than you think you do and everything will be fine. When you feel like you may lose it, just come here and talk to the women on the board, everyone is absolutely wonderful and so knowledgable. Good luck with chemo!

    Kshorten - I used dignicaps too, make sure the cap is super tight specially on top of your hair, if you feel any air pockets have your nurse line the latex cap with napkins so that the outside cap fits super snug against your scalp. Most of my loss was from the top of my head because I wasn't properly fitted. Also, if you get up to use the restroom make sure your nurse turns the machine back on. 3 times my nurse left the machine on pause with me and I think that's why lost a lot of hair :( also, be careful with getting overheated, I felt like I shed more when I was exposed to heat. I always wore a cold pack secured with a scarf when I cooked, that also helped keep hair from flying all over the place.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited November 2016

    thanks viktoryak. Yes. I guess I will be driving home. I live 25 minutes away without traffic. So with traffic it's like 45 min to 1hr away from my infusion center. But I'm sure I can pull over to change it out. Thanks for your response

  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    jstan81963 - Heading to get my hair nets today. Always wore my hair in a pony tail with a hat but can't do that right now.

    Edu - Thanks for the advice. My nurse on my first treatment was awesome and the cap was nice and tight. I'll have a different one this week so I'll make sure she fits it nice and tight too. The napkins are great advice to make it snugger. My machine makes a loud beeping noise if it's paused more then 8 mins but she was always back before it went off but I'll make sure it's turned back on just in case. I'm glad I'm doing this in the colder months so it's not too hot outside or inside for that matter.

  • meow0369
    meow0369 Member Posts: 126
    edited November 2016

    Edu, I lost most of my hair on top as well. Did your hair grow equal to the other places? Or did it all grow different stages. I'm getting growth quickly on my sides except for my top where I have bald spots. Frustrating! And scared it won't come back. MO said hormonal changes will affect hair.

    Also does anyone else have eye sight changes ? I hope mine goes back to normal. I don't wear glasses and wonder if I have to after this. I'm 7 wks PFC maybeore healing time needed. My muscles still have pain and stiffness too. Anyone had massage to help??

  • javamama
    javamama Member Posts: 28
    edited November 2016

    Edu- thank you for your response. Girl, you just don't know. I have a LOT of hair. I could seriously lose 50% and it would still look thick and lustrous as long I don't lose it in patches. The I get my hair cut, my stylists has to thin it out so it doesn't poof and we still use a styling creme to make sure it lays flat.

    Meow0369- WTF? You lots patches on top of your head? I thought as long as the cap was on tight, you just shed more than normal and didn't lose in patches. Crap.

  • willa216
    willa216 Member Posts: 162
    edited November 2016

    Edu - thank you for letting me know your chemo regimen (we have basically the same) and for your words of wisdom. XO.

    Meow - Yes, I am done with chemo as of Friday. Just now rising from the ashes. Ha. So grateful. I'm thinking of you and hoping each day brings you more happiness and strength.

    Cr77 - Congrats on being done!

    Hopfull and Javamamma: Have you seen the comprehensive thread on CCing? (A big thank you to Dancetrancer) It should provide most of the info you'll need to get started.

    Cold Caps FAQ's - newbies - how to save your hair from chemo

    Javamamma: I can totally relate to you. I became utterly unglued about losing my breast, my hair, my body and my life as I knew it. I had a convoluted situation running up to surgery and tried hard to save my breast (too small for tumor size). I was so very attached to my body. When I couldn't I did everything in my power to pick a surgeon and an approach that I thought would best help me feel and look like myself. Then I turned my focus on to hair. And I don't even have great hair like you do! For me, I'm not sure it's so much vanity (though it is a bit) as fear of loss and a desire to be in control. I had worked for many years to feel good and safe in my body and I did! It was wonderful. And then cancer happened. I can't say for sure of course but I think you'll find that you'll do better than you expect as you walk this treatment path. I think our minds slowly adjust and maybe we become a little more accepting. I wish you peace. Lots of people do really, really well with capping.

    Kechla: I hope you're doing okay with SEs this week after your final chemo. Hugs to you .Take care.

    On the hair front - I've lost 30% of my hair based on pre and post chemo ponytail measurement. No bald spots. But maybe I measured incorrectly upfront because it looks far worse than that. I'd say more like 50% loss. I look like a dead, drowned rat that the cat dragged in (if we had a cat). But I have hair and I hope it hangs on. I don't want to be overly confident because it seems that many on TCHP lose a ton of hair PFC. Hair is everywhere. When I washed yesterday I lost over 200 strands and it's been like that for a few weeks. And yes, sadly, I did count although I'm sure that time would have been better spent writing in my gratitude journal ;) Right now I'd like to take a nap until early Feb when I can wake up, wash my hair like a regular person, get some color (holy moly!) and a cut. Anyway, wanting to be optimistic. I'm glad I capped because whatever happens to hair it has been a slow process and not the trauma (for me) of being bald all at once. It was also good for my husband because it allowed him to do something action-oriented to help. And I don't think it's so bad to shift focus from life and death issues to hair - at least for a while.

    I hope I have said it enough, but you all have been my sanity for that last several months. I would have been lost without your kindness and your generosity of spirit. Thank you.

    Sending good luck and good vibes to all the current cappers! It sounds like everyone is doing well so far - fingers crossed.














  • jstan81963
    jstan81963 Member Posts: 24
    edited November 2016

    update:::) Got my hair colored today and......it worked it didnt shed that much, like the same as a wash. it feels so good to be semi-normal again !!! YAY

    thank you all for your input

  • javamama
    javamama Member Posts: 28
    edited November 2016

    Just got the go-ahead that my cold caps freezer usage is approved. YAY!!!! I was really concerned about having to cart them back and forth in the cooler. I would've done it, but now I can drop the caps off the day before treatment and have them there ready to use during treatment. One less thing for me to worry about!

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    I am ordering mine now, Javamama, did you get the Gel Headbands too?


  • javamama
    javamama Member Posts: 28
    edited November 2016

    Pamela- I'm just going to use the moleskin/panty liner solution to protect my forehead and ears. Which vendor are you going with again? I think it's Arctic, right? And is that where you ordered the gel headbands?

  • willa216
    willa216 Member Posts: 162
    edited November 2016

    jstan - great news on your hair cut /color. So you like the Daniel Fields color? Did you buy that online and take to hair dresser? (sorry if I'm missing something). Hope your post surgery pain is better!

  • jstan81963
    jstan81963 Member Posts: 24
    edited November 2016

    willa216, yes i ordered the Daniel Field online (http://www.danielfieldmailorder.co.uk/index.asp?) the shipping to U.S. wasn't that bad i ordered 2 different ones because i was unsure of the color, i think it was $25 total with shipping to MA. its a powder that you mix with water and shake then it turns into a foam, my hairdresser put it on for 45 minutes then rinsed.

    post ovary removal is getting better every day...

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    I'm doing Penguin but now I'm doubting myself and will look into Arctic before I decide.

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited November 2016

    Well said, Willa!!

  • Jiffrig
    Jiffrig Member Posts: 158
    edited November 2016

    The gel headbands are the best investment. I have 50% more hair on forehead and sides where they were. I used penquin

  • javamama
    javamama Member Posts: 28
    edited November 2016

    Pamela- don't second guess yourself. It's what I did when I ordered from Polar. Their caps look like the Penguin ones, but the costs was about $200 less per month. But they only give you 6 so you have to stick them back in the freezer and rotate them. I talked it over with my hubby and he said that wouldn't be a problem for him to do and that by the time we got to the refrozen ones, they should be good to go. It's a delicate balance between what you can do, afford and all that. Penguin, Arctic and Dignicaps are all caps with proven records. I'm going out on a limb with the Polar ones. But if they look and work like the Penguin ones, I think I'm alright.

    All of this cancer crap has me guessing and second guessing again and again. Ugh

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