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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Alibeths
    Alibeths Member Posts: 167
    edited April 2015

    looks great!!!!

  • kachincolor
    kachincolor Member Posts: 62
    edited April 2015

    Dear WPMoon,

    I think your hair looks great!!! You are lucky it is so long -- and looks very full even though you have lost some to chemo. Congratulations on all of your hard work and efforts.

    I am noticing growth around my hair-line the most. Just little wisps of hair. But after a bad reaction to Taxotere that left me in the hospital for observation over-night I was pleasantly rewarded with the positive comments from several nurses who were surprised I was finished with my third round of CT.

    Hugs!

    KImberly

  • NYinshocked
    NYinshocked Member Posts: 20
    edited April 2015

    WPmoon, your hair looks great! I had a really big shed today while brushing my hair, like few hundred strands. It's very depressing and I am extremely discouraged. I have my 4th AC tomorrow, I really don't think if my shedding continue this I don't think I will last to weekly taxol. :(

    Any suggestion on when the shedding start to slow down from AC?

  • Gatomal
    Gatomal Member Posts: 418
    edited April 2015

    wpmoon...looking good. I'm sure it takes some time to get things camouflaged, but the length and thickness still look good to me. I'm having some minor loss now, not sure if it's because I'm 3.5 months after babies, or maybe because I'm three weeks after surgery? Who knows. I'll just stop finger combing it and I'm trying to leave it alone

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited April 2015

    @steflove i too am triple negative

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited April 2015

    i have now lost 90% of my hair, it is thinner than a childs hair now... And it looks horrible,,, extremely thin on the top, with my bald spot i think from frostbite, so it is a combo frostbike breakage and bald spot which is huge,my part is very thin as well... My last AC was 6 weeks ago, and im on my 4th taxol now... I have no growth at all, i am beginning to think the caps are causing more harm to my poor scalp than good. I hate looking at myself in the mirror... I feel so ugly... Oh yeah and to top it off my eye lashes and eye brows are going going gone... 8 more rounds of Taxol, im thinking of packing up these caps and sending them back... The only bright spot is shedding had eased u

  • melb44
    melb44 Member Posts: 64
    edited April 2015

    Tripper4ya - I am so sorry to hear this. My heart goes out to you.

    wpmoon - I think overall it looks very good. I am sure it is discouraging though to keep seeing more come out.

  • melb44
    melb44 Member Posts: 64
    edited April 2015

    Question -

    So I have alot of thick hair and I always have had it shed when I brush etc. I was never worried about it though because even though a bunch comes out every day I still couldn't really see the hair loss.

    Now that I am babying my hair it is still coming out maybe 20-30 hairs a day. Do you think that will make my hair loss even worse with the caps?

    I am starting to get nervous that it won't work for me.

  • pch
    pch Member Posts: 185
    edited April 2015

    Just wanted to say that you guys have been the most awesome support system I could've asked for through this (and especially you, Kim, which you know of course). I'm done. And I have hair. And it was most definitely worth it. Thanks so much for being here. And hang in there newbies. It will go by. And you will survive the capping.

    On to the thread where I keep checking to see when I can take a normal shower and color these roots and use the Nioxin and and and … love you guys.

    <3 pch

  • Alibeths
    Alibeths Member Posts: 167
    edited April 2015

    PCH! CONGRATS! Lets see pics!

  • pch
    pch Member Posts: 185
    edited April 2015

    image


    Here you go, eleven days PFC. So this is five rounds of high-dose taxol/carbo three weeks apart, which is harsher than the weekly on the hair I hear. (This is all fluffed up and nice after a shower.)

    Put that in your doubting oncologist's pipe and smoke it. Oh yeah and *%#)*% cancer.

    Below pictures of parts. The rear part is representative of the worst thinning. I have that in a couple of spots on the crown. And that's why god created Toppik.


    (That stuffed animal on the floor in the background? My daughter brought it to me the first night after surgery, when I found out. I think he deserves to be in the pic.)

  • pch
    pch Member Posts: 185
    edited April 2015

    image

    My awesome Eddie Munster streak and part thinning.

  • pch
    pch Member Posts: 185
    edited April 2015

    image

    Did this and spots like it freak me out? Of course they did. (Some are a little more diffuse/wider than others. And admittedly I have a weird cowlick back there anyway.) But that's why … god created Toppik.

    Good luck ladies. It works. I pray I'm not a bad PFC shedder.

  • hope49
    hope49 Member Posts: 239
    edited April 2015

    PCH - you look awesome! And I love "Put that in your doubting oncologist's pipe and smoke it. Oh yeah and *%#)*% cancer". Right on!!!

    Cappers, you are all doing great. I know not all the results are as you may have hoped for but I really believe in the end it's all worth the effort. You need to keep the faith and get used to a less than ideal hairstyle for just a few more months, and then it's all good. Please think about Toppik, toppers, etc before throwing in the towel.

    Sending you all lots of positive thoughts! XO

    Leslie


  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited April 2015

    @melb44 100 hairs per day is normal shedding regardless so if you are losing 30-40 hairs a day you are doing good

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited April 2015

    Im not throwing in the towel, just crying on a daily basis.. even though I have lost 80-90% of my hair... my hair is naturally very thick, and now I have a very thin wimpy ponytail when i pull it back with my hand to see the girth of my hair... 3 Rounds of AC down (I refused the 4th) and the 5th round of Taxol is thursday I am still capping. only because shedding is now very minimal , my MO swears my hair should start to grow back on the Taxol.... although I am yet to see that... and once my mange looking patches start growing it won't be to bad looking, and once my follicles and hair is strong enough I can wear halo extensions until it looks better... I have decent coverage to the back of my head, it is just the top that is visibly thin with a huge bald spot (from breakage from frostbite, and where it thinned out bad )

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

    Yay PCH!!!! You look mah-ve-lous!!!!! Love your spirit. Keep on kickin' it!

  • melb44
    melb44 Member Posts: 64
    edited April 2015

    First AC complete - now just in the after caps times. It hasn't been nearly as hard as I was worried about. Luckily I was referred to a woman who helps with cold caps. She was amazing and trained my mom really well. Not just have to cross my fingers it works.


    image

  • Gatomal
    Gatomal Member Posts: 418
    edited April 2015

    great job melb! Good luck!

  • suladog
    suladog Member Posts: 837
    edited April 2015

    pch, you look fabulous!!!i too have all my hair after 12 weekly taxol and herceptin. Waiting to get a decent picture without the herceptin runny nos

  • PatinMN
    PatinMN Member Posts: 784
    edited April 2015

    melb - it looks from the picture like your cold cap may have "popped up" and lost contact with your scalp.  Make sure that you push down on it for good contact, or if it creeps up too much, have your helper redo that cap.

    pch - you look great!  I can barely see your "Eddie Munster" stripe.  I didn't take a picture of mine - should have!

    tripper4ya - I hope you start seeing some regrowth soon.  You should, as long as you keep capping. 

  • Angiel
    Angiel Member Posts: 175
    edited April 2015

    Wow pch - you look amazing!! So happy for you!!

    melb - good job! looking great in those caps!

    tripper4ya - glad to hear that you're still capping! I'm right behind you on the AC T...tomorrow is Taxol #4. I have some shorter hairs sprouting in on my hairline and my leg hairs seem to be coming back strong, so hopefully your regrowth will start soon. I feel like I am shedding more now, though. I am constantly picking up my hairs on everything I touch - food, purse, clothes, etc. Ugh. How are your eyebrows & lashes? Mine are thinning but I've never had full brows or lashes anyway. I started using Latisse and I'll see if that helps.

  • wpmoon
    wpmoon Member Posts: 53
    edited April 2015

    Is anyone taking Biotin or a prenatal DURING chemo to help with hair regrowth, or waiting until after chemo to start that up again? Not sure what "protocol" is or if it's worth it to start now while I'm still capping. Like I said, I haven't noticed any new growth yet.. But my wimpy looking hair is making me sad. I want to see some baby hairs come in!

  • pch
    pch Member Posts: 185
    edited April 2015

    Thanks everyone! I feel very relieved to be through this part of the program. I know there's still a lot to come, but today I'm just focused on being PFC.

    And just so you all know, I did not keep all of my hair. This is what I'm thinking at least 30% hair loss looks like. There was plenty of shedding, thinning, and bald-faced just falling out along the hairline due to cap-fitting issues. So when you have those days when it just won't stop shedding, know that you have a lot more hair than you think (and please remind me of that on the next thread when I'm still shedding!)

    Re: regrowth, Tripper4ya, the hair that just plain fell out along the hairline is about an inch and a half long now. (I started carbo/taxol January 6 and that hair fell out like clockwork on day 18 or so--about an inch width in the back from ear to ear along with the usual thinning along the front hairline.) I also feel some bristly bits here and there on the scalp. So it should keep filling in as you go along hopefully. My eyebrows and lashes are also growing back in. I'd say it's been about three weeks maybe a month since they went. It still doesn't look like much, but it's there and growing. So try to hang in there. The taxol is easier than what you went through.

    And everyone, make sure you wipe your caps before changing them out! I got frostbite along my hairline and right up my part on infusion number five, the last one (like an idiot). So be careful out there. And don't get overconfident. Remember to check that stuff.

    wpmoon, there's 300 mcg of biotin in my vitamin B tab. I use Super B Energy Complex (NatureMade) soft gels. And I think this supplement really helped with both feeling better and my hair and nails during chemo. (Weirdly, my nails have never looked better and they're usually sort of lame.) I also took a silica supplement, though less reliably.

    Good luck everyone! <3 pch


  • makingway
    makingway Member Posts: 465
    edited April 2015

    mel44- The cap is not fitted properly. It needs to be in close contact with all areas of the scalp. Are you using the gel bands? I can't tell by looking at the photo. Sometimes what can happen is that when securing the elastic bands too tight it causes the cap to be pushed up. When your helper is securing the elastic bands on the cap it helps if you pull down on the chinstraps and hold them down. Feel free to send me a private message for instruction.

  • Angiel
    Angiel Member Posts: 175
    edited April 2015

    Wpmoon...I also take biotin and silica supplements and think they have helped. I began taking them 3 weeks prior to starting chemo.

  • pch
    pch Member Posts: 185
    edited April 2015

    Angiel, save your Latisse until you're 4-6 weeks out. It won't protect you. I used it in the beginning religiously and my lashes and brows hung in for a while and then all fell out within a week. They're growing back now, but I'm waiting another couple of weeks until I start the Latisse (for me Lumigan) again.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited April 2015

    pch - great hair! My part before starting chemo looked thinner than yours looks now. Congrats and happy for you finishing chemo with success.

  • hope49
    hope49 Member Posts: 239
    edited April 2015

    image

    imageHere are my ponytail shots - the top is about 3-4 months pfc and it's so tiny - I wrapped the band 4 times and could still slip it right out! The next shot is a few months later - the hair near my neck really filled in so it pumped up my pony quite a bit. Hang in there!


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited April 2015

    I need to edit my comment above, I should have said my part was WIDER, had less hair even befor chemo than pch has after chemo.

    I was in chair today, I still feel drugged, so I'm using this as my excuse. Happy

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