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Cold Caps Users Past and Present, to Save Hair

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Comments

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2015

    JJKrav, I don't think anyone posting here colored during chemo - very few if any. I was in the same situation as you with dark brown hair and very gray/white roots. I did a final color about a week before chemo - also a no no but seemed to cause no harm. My colorist used an organic color product, and my hair looked great for several weeks before the roots started looking bad. There are things you can use to cover the roots temporarily - I can't remember the name of the stuff I used, but you sort of "painted" it on with a mascara wand thingie, or another variety had a sort of magic marker type applicator. It helped to tone down the gray, and washes out. I only used it on my part - the other areas of my hair looked fine (unless I was out in the wind...). Depending on your shedding after chemo and how willing you are to go against the Penguin timetable, you could color earlier than suggested. I colored 7 weeks after finishing chemo, using a no-peroxide, no-ammonia product that didn't color too well but definitely helped. But I was not shedding at all. What chemo will you be getting?

  • pch
    pch Member Posts: 185
    edited January 2015

    I just wanted to write a quick note to folks who want to try Latisse. It was not in my insurance formulary (and was going to cost $450). But I asked my onc doc to write to the clinical pharmacy that it was for chemo and insurance covered the other brand, Lumigan at a low copay. So it's worth a try! I'll start using it tonight.

    Also, a question for cappers past. I had very little cap coverage in the usual nape/left lower side spot (same spots as in dancetrancer's photo on p 421). I'm two weeks post first treatment. That hair fell out today (as I expected it would, it wasn't too much). Other body hair is also going en masse. If the rest of the hair on my head is hanging in (I pulled on a few inconspicuous spots and it held), is that a sign it's working? Or have people had not just shedding but real balding after some initial body hair loss on taxol/carbo or some other taxane? (I know AC is harder on the hair.) I'm trying to hang in as calmly as possible. (Because, as my PCC rep says, "Worrying gives you alopecia.")

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

    Yep, pch, I think that is a very good sign. Hang in there!!!! You'll feel much better after you see all your other body hair go yet you still have hair on your head! I did TCH and didn't ever have any balding, just shedding like I showed in that pic.

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    I bought the Lumigen when I was in Mexico a few months ago. I've used it before to make my eye lashes fuller. You can make it last longer if you get an empty plastic mascara tube, put the Lumigen in it,and use the wand to apply it.

  • pch
    pch Member Posts: 185
    edited January 2015

    Thanks dancetrancer. Heart skipped the first few beats this morning. And I've read through so many other women's posts that I know it's like you just gotta hang in and gain confidence as time passes. But day 21 is still eight days away and I needed some CCer love today! Thanks for ponying it up so quickly. :) Loved seeing your picture the other day. You look great.

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

    Thanks pch, happy to help!

  • RainDew
    RainDew Member Posts: 228
    edited January 2015

    hi fellow cappers,

    I am nearing 17 weeks PFC and still lightly shedding, but I thought it might help newer cappers to see what this looks like in reality. And while I am eager for shedding to stop completely, overall I couldn't be happier.

    You can do this! (Btw, I ignored the deodorant thing entirely...can't see what it had to do with my hair and assume it's based on from what I can tell is some fairly bad science about aluminum and breast cancer...)

    image

  • pch
    pch Member Posts: 185
    edited January 2015

    Thanks RainDew! That is heartening. You have great hair!


    (And ok, I know. Stupid question: PFC? Post first chemo?)

  • RainDew
    RainDew Member Posts: 228
    edited January 2015

    final chemo :-) I finished end September (woo-hoo!!)

    And thank you!!! It's a bit of a mess, but I am SO HAPPY to have it!

  • pch
    pch Member Posts: 185
    edited January 2015

    It's all about perspective. Of course: final chemo. Congratulations!

    One down five to go here and I can't wait.

    Thanks for the support!

  • Jennjdance
    Jennjdance Member Posts: 45
    edited January 2015

    I just saw that today only Latisse is on sale on Amazon for $35 down from $140, plus I think free shipping.

    http://www.amazon.com/gp/aw/d/B00IS6XPQY/ref=mp_s_a_1_1?qid=1421695467&sr=8-1&pi=AC_SY200_QL40&dpPl=1&dpID=41+u8mC9CEL&ref=plSrch


  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Looking great, RainDew. Like pch, I'm praying we keep our hair. So stressful. I'm 2 days behind PCH so I'll see what happens later in the week. Fingers crossed for both of us :)

    JennJdance - I thought you needed a prescription for Latisse. I can't open your link but very interested ( on my cell ... I'll try on desktop computer instead). Still trying to get it approved under insurance (like PCH recommended). If not, it will cost me $150. Worth it or not?? ♡ Kim

  • Hortense
    Hortense Member Posts: 718
    edited January 2015

    Raindew - Re: aluminum. I go to a nationally respected oncologist who is the head of a breast cancer center at a major hospital in NYC and she is firm about her patients not using deodorants with aluminum in them. Quite a few doctors believe it might well be a trigger for breast cancer when combined with other factors. It's not bad science, much as I wish it was.

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

    Some of us with potty mouths have a different version of the "F" in PFC. Loopy

  • suladog
    suladog Member Posts: 837
    edited January 2015

    You should hear what I think the FU in CMF stands for after dealing with it 25 years ago. Starting 12 wks of TH next week, cold caps arriving tomorrow, everything I'm hearing on here and for those I've met , plus Drs and Nurses are very positive. Fingers crossed.

  • RainDew
    RainDew Member Posts: 228
    edited January 2015

    hahah - with ya on that one dancetrancer!

    Hortense - thanks for that. I think everyone needs to make her own decision here, and I didn't mean to sound judgemental.

    I think it's fair to say the science is mixed - a quick pubmed search of various studies on the topic leads me to feel ok with deodorant (and natural soy btw, another topic where each of us will make her own decisions). But I totally respect that others feel differently. What I was trying to get at was that for those who are generally comfortable with regular anti-persperants at some point, I don't see why it would affect your hair per se.

    Thanks for your understanding

  • pch
    pch Member Posts: 185
    edited January 2015

    Dancetrancer, good to hear I'm among friends. :)


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

    Ha ha ha ha!

    Good luck tomorrow Suladog!

    Regarding antiperspirant, I sweat like a pig and smell with deodorant only. I tried it. So, I'll take the aluminum risk. I also still have a few drinks every weekend. I was really paranoid about all kinds of stuff for a while. I've moderated a lot since initial diagnosis. I'm still careful with diet, etc., but I decided not to make myself crazy over this stuff. I want to live my life and enjoy whatever time I have left, be that 1 month, a year, or 30 years (hopefully!). To each their own, we all decide what risks we are willing to take.

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    Kim, the Latisse really worked for me several years ago when I used it to enhance my lashes. I'd recommend it for after you complete chemo. I plan on starting the Lumigen in a few weeks

  • pch
    pch Member Posts: 185
    edited January 2015

    So is there no point to the Latisse during chemo? I have some, but I'll save it if there's no point till later.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Ha ha, Dancetrancer!! Love it. From one potty mouth to another!! F U Cancer!

    Would also like to know if I should start now w stuff to save eyelashes and brows. I'm doing enough to try & save my hair .... would prefer not to look like a freak if I don't have to. Hard enough that I stopped curling my eyelashes whaaaahhh. Thnx again for all the help & support ♡ Kim

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    I think most women use it afterwards. I haven't lost any lashes or eyebrows and I'm two weeks PFC.

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Dancetrancer,

    Thanks but I'm starting chemo on the 30th, next Monday is any old port in a radiology lab day for me, then lab work. They weren't even planning on giving me adjunctive therapy since the tumor was well under 1cm, 90% ER+......but then there was the HER2+ part. When the new Dana Farber study came out a week or so ago that suggested that all women with small node negative HER2+ tumors should be treated, adjunctively my drs at UCSF changed their mind so here I am , starting chemo when I thought I'd be starting tamoxifen.

    I was wondering about eyebrows.... I'm very fair, red headed with eye brows so pale I've been drawing them on since I was 13. I haven't ever really had to tweeze. My eyelashes are also not much to write home about as they're shirt stubby and pale too. I have no idea what to expect in the eyebrow dept, as 25 yrs ago with CMF I didn't notice much difference. Will this make the few pale hairs I've got there fall out? Should I use something? If so what? I've seen a lot of product names tossed around here. Any suggestions?

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2015

    Suladog, the weekly taxol wasn't too hard on my eyebrows or eyelashes. I would say my eyebrows thinned just a little bit - I had to do less tweezing. I lost my lower lashes on one eye - and I didn't even notice until I had stubs already growing in. My other lashes were fine. My chin hair disappeared for a while! I think Daniella lost more eyelashes - it's pretty variable with taxol.

  • incognitomom
    incognitomom Member Posts: 80
    edited January 2015

    Suladog, I never lost my eyelashes on Taxol and kept my eyebrows until 2 weeks PFC, then they thinned quite a bit suddenly and grew back just as sudden.

    Looking good RainDew!

  • suladog
    suladog Member Posts: 837
    edited January 2015

    PatinMN

    Well that's good to know. The first time waaaay back when I never told anyone I was working with that I had cancer and was having chemo. I'm in the movie business and was paranoid about anyone knowing so I had an elaborate wig made that looked just like my hair. I wound up not needing it, so I donated it. Hopefully some other redhead got some use out if it. Everybody in my support group was complaining about losing their eyebrows, they thought I'd already lost mine! I probably should have had yebrows made.

  • suladog
    suladog Member Posts: 837
    edited January 2015

    DaniellaD,

    And anyone else out there... I start chemo a week from this Sat, I'm PCC and will be getting 12 TH once a week for the next 3 mo. I have a routine coloring set for this day a week before can I do it , I really need a colorin

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Suladog - From what others have said, as long as you use ammonia and peroxide free dye, you should be ok. I colored mine back to original dark brown color 2 weeks before my first treatment (1/8). Didn't seem to effect my hair .... for now anyway. I'm already freaking out cause it did not cover like normal. Stupid grays are already showing thru .... ahhh. Good luck :) Kim

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Thanks GoldenPawsK,

    she's going to use an ammonia free dye and I don't know about the peroxide, most likely very little if any. This will be 1 and 1/2 wks before starting TH. Ironically I colored my hair all through CMF last time since nobody told me anything about caring for myself and didn't lose my hair , it thinned but not much. There's so much more info out there now!

  • Hortense
    Hortense Member Posts: 718
    edited January 2015

    I lightened my roots six days before starting cold caps and months later discovered damage exactly at the point between my bleached hair and natural hair. There was a round ball that I could feel easily where the two colors met and I suffered a great deal of breakage at that point. The balls would crack and break causing me to lose the long bleached part of the hair strands. Clearly, some chemical reaction had taken place at the scalp level that caused damage to the newly bleached hairs. I do not think I would have had any chemo caused damage had I left my roots their natural color.

    Maybe darkening roots won't hurt, but I found that lightening them certainly did damage mine.

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