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Cold Caps Users Past and Present, to Save Hair

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Comments

  • heidi16
    heidi16 Member Posts: 44
    edited November 2016

    KD2016: I am also almost 5 months PFC and noticed the other day that the lashes near the inner corner of my left eye were gone. Me too have been using Lattisse. I never lost all lashes and brows first time around but thinned considerably. Also bumping to hear from others re second round of lash/brow loss!

  • kd2016
    kd2016 Member Posts: 105
    edited November 2016

    Thank you Heidi. How about your eyebrows? Mine look fine so far. The first time around it started out with my lashes. I did not lose all same time. Was a gradual loss of eyebrows, new ones were coming out as the old ones were falling out. So it looked very light and thin and sparse

    I'm so exhausted and discouraged by all of this.

  • il311
    il311 Member Posts: 26
    edited November 2016

    hope everything went okay on Thursday!

  • il311
    il311 Member Posts: 26
    edited November 2016

    Hi All,

    I finished my second round of TC on Friday. Had a pretty big shed on Tuesday before my chemo but does not noticeable yet. A little worried because not it seems to keep shedding. Anyone have any tips?

    Thanks in advance

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    When can I expect my first shed? My 1st tx was last Wednesday.

  • il311
    il311 Member Posts: 26
    edited November 2016

    Hi Pamela, mine came the day before my second treatment. My oncologist tells me the next few weeks for me will be telling if I will keep my hair. I have two more rounds of TC to go...trying to focus on being half do.

    Wishing you luck!!

  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    And mine came the day of my second TC treatment and I have 2 more to go also. The shedding hasn't been to bad for the last 5 or so days so I'm staying optimistic. I believe it's worth a try.

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    Thanks IL311 & shorten, I'm doing TC also, only 4 rounds. The studies sound promising for this treatment, but I'm preparing for the worst and hoping for the best!

    Do we necessarily lose our lashes and eyebrows for sure on TC? and when would that happen? Been using Latisse on both.

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

    Pamela I didn't lose my lashes and eyebrows until about 7 weeks after I finished chemo. I'm lucky I only lost them the once though and I didn't use Latisse or anything.


  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited November 2016

    Pamela, i'm almost 4 weeks PFC and am down to a third of my eyebrows (easily fixed with makeup) and a third of my eyelashes (in denial about the prospect of losing more).

    Tomorrow i go for a first microblading appointment, to see if money can buy fabulous semi-permanent eyebrows. Eyebrows have never been my strong suit anyway.

  • Cr77
    Cr77 Member Posts: 14
    edited November 2016

    I am also almost 4 weeks PFC and have lost most of my eyebrows and some of the lashes. I have been using latisse and Brian Joseph. I have been having shedding that doesn't seem to be slowing down PFC and hoping in the next few weeks that will slow.

  • willa216
    willa216 Member Posts: 162
    edited November 2016

    Hi All:

    So, I got Madison Reed root cover up (plus Toppik which I haven't yet tried) in an effort to look semi-reasonable on Thanksgiving.

    Madison Reed was okayed by Arctic. (I did PCC but they wouldn't comment either way about safety of any products). I know a lot of cold cappers have used Madison Reed. Anyway, it's really itchy on me so I double checked the ingredients. It doesn't contain ammonia, sulfates or peroxide - good. However, it does contain aluminum -bad. I just might faint. (I have crossed over the edge of sanity with this whole cancer and hair anxiety). Both Arctic and PCC tell us to avoid deodorants with aluminum so it seems like this product might not be a good idea for us. Also, I think in general cancer patients are to avoid aluminum. If I didn't have to be at an appt in 30 minutes I'd wash it out of my hair right now. Before I actually do pass out. Anyway, this makes me mad!! I'm so paranoid that my hair is going to fall out because I tried to look a little better.

    For everyone asking about eyebrows - I did TCHP so don't know if I'll be able to help. I had almost all of my eyebrows and lashes until the last week of chemo . Then I lost all of eyebrows the week after chemo ended. I still have about 50% of lashes. I used Brian Joseph's gel on eyebrows only, not lashes. Go figure.

    Hope everyone is having a good week so far.




  • il311
    il311 Member Posts: 26
    edited November 2016
    My hair still is shedding quite a lot 5 days post second treatment. Does anyone know if it slows down? I am beyond nervous that my hair won't make it through. Any tips would be appreciated.
  • il311
    il311 Member Posts: 26
    edited November 2016

    Thanks all,

    My oncologist was really weird about me using latisse and told me to wait until my treatment was done. I am not sure if there is a down side to using it and wondering if anyone had luck with it? My eyebrows and lashes seem thinner but I used it before I was diagnosed and now just not sure if that is why. Also regarding Madison Reed, I purchased that, bumble and bumble, wow and every version under the sun but wondering what works best. I don't know about anyone else but I am a little stressed about seeing everyone at thanksgiving!!! I will have to remember to breathe...





  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    Mine continued to shed pretty heavy for about 7 days after my 2nd treatment and now it's slowed down to a little heavier then a normal shed each day. Sometimes I feel the same way as to whether I'm going to have any left but except for a pretty thin spot on the top of my head I still have full coverage, and if you didn't know how thick my hair was before you would never know how much I've lost. I don't really have any tips except to keep babying it. I wash mine twice a week with organic shampoo and once a week I do blow dry my bangs on cool, I just don't pull on them. I think that the chemo has taken a lot of the curl out of my hair which I'm ok with, at least that's one plus.

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    Good luck Tunegrrl, I had to look up microblading. Please do before/after pics!

    IL311--I feel people expect us to look worse than we do anyway so you are probably going to look fabulous for Thanksgiving!

    willa216--your story about the Madison Reed made me laugh!

  • Runner70
    Runner70 Member Posts: 177
    edited November 2016

    My lashes/brows are growing back after their 2nd shed and someone on her recommended Lancome's eyebrow cream. I got the blonde color and bought the brush. It makes a huge difference! I'm going to keep using it even after all the growth staggers out some.

    So, I have about 2 inches of new hair growth from hair that I lost during chemo. My hair is strawberry blonde to light brown. At first the hair I lost came back kinda grey but now it's coming in the light brown color but I'm also seeing a lot of copper colored spots! My hair was very coppery when I was 5. Is anyone else noticing their hair reverting back to childhood color? I have no idea what drug is doing this! Chemo, tamoxifen...Is this normal?

    All I want ismy damn fertility back. I guess my request got confused.

  • il311
    il311 Member Posts: 26
    edited November 2016

    Pamela23, great attitude and will focus on the positive!

    Kshorten, thanks too and keep me posted as love to here others experiences. This is such an unknown journey and knowing others are going through it makes me feel less alone!

    Have a great evening!


  • javamama
    javamama Member Posts: 28
    edited November 2016

    So does your head feel normal until the first big shed. ( I like calling this the first BS. As in when's this bs gonna get started. lol) Because other than being tender where exposed skin got too cold, my head and hair feel normal. So, I'm assuming everything goes along all hunky dory until BAM! BS happens. And then you have to baby the hair?

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited November 2016

    I laughed so hard about the first BS! Thanks.

    I think we are to baby our hair before during and after the BS, and for a few months PFC.

    Glad you're digging the lancôme eyebrow cream, Runner! It is more important to me than lip colour right now.

    Willa, sorry to hear about your product fail. Keen to find out what you think of Toppik if you try it.

    My beauty routine now is all about eyebrow cream, Toppik, and lipstick (on lips plus a bit blended in on cheeks, chin and nose). I am very lazy about cosmetics and only do things that make a big difference.

    Good luck everybody :)


    P.S. I suddenly seem to have shingles. Rash but not painful, started anti-viral medicine yesterday, day 1. F%%k this s%%t.

  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    javamama - my hair actually hurt before my big BS (I love this too by the way!). If i moved it it was painful. I haven't had any pain since then so I'm hoping for no more BS!

    Tunegrrl - I'm sorry that you may have shingles, I asked my onco before I started if I could get the shingles shot and he said no. If you have them I hope it's just a mild case. I'm getting the shot as soon as he gives the go ahead.

    I was Face-timing with my son last night and showed him my bald spot and he said it looked like I had been scalped, when I looked in the mirror he was right. Oh well gotta laugh, this too shall pass.

  • Hazel15
    Hazel15 Member Posts: 13
    edited November 2016

    Hi all, I am new to this site..just diagnosed in mid Oct. I am scared out of my mind to lose my hair...my best quality. Can someone tell me what they think about Dignicap? They have it at my center. Is there a better one? Penquin? Any and all advice is greatly appreciated

  • kshorten
    kshorten Member Posts: 58
    edited November 2016

    Hi Hazel, I'm using Dignicap and am getting ready to have my 3rd treatment next Thursday. I've had thinning and I do have a bald spot on top. I believe the spot is from where the cap didn't hit my head properly. The advantage to the Dignicap is that you don't have to change caps during treatment or worry about dry ice if you center doesn't have a freezer. Cost wise they are almost the same I believe. I'd be glad to answer any question if I can.

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    Welcome Hazel15! You are blessed to have your center having the Dignicap, I'm sure it's much less hassle. The Penguin is just a lot of work for your significant other. Also, getting the dry ice the morning of and the constant taking the temps and changing of the caps. I'd be interested to hear what their success rate is vs some of the other ones that aren't computerized. I know when I asked at my hospital, no one had seen anyone use a cold cap before so they all are intrigued with how this is going to turn out. So am I!!

    Anyone loose their taste? I feel like this morning, Day 6 post chemo, I couldn't really taste my breakfast. Great, right before the biggest eating day of the year! My throat has definitely felt raw the past couple days but I read that the chemo can play with the lining of your GI tract. It's like a game show--"What Side Effect Will Present Itself Today". I don't feel like playing anymore!!

    Javamama--Love the BS acronym!!

  • deemendoza
    deemendoza Member Posts: 24
    edited November 2016

    Good morning ladies,

    Anyone working out? I completely stopped and the pounds are starting to pile on. I stopped because somewhere I read that we should avoid heat and sweat as this could reactivate the chemo. Could this be true? thoughts? what are you gals doing to keep moving?

  • kd2016
    kd2016 Member Posts: 105
    edited November 2016

    Happy Thanksgiving to all the wonderful and kind ladies on this site. Wishing everyone health and peace of mind this holiday season. 🦃

    Best of luck to the ladies who have just started chemo and cold capping. It's a stressful and unpredictable process in many ways. Regardless of the cold capping results, overall it's worth the efforts. Keep in mind that we are more resilient than we think we are. This is from someone who thought no way would survive this process and ordeal and cried for days at a time. But I'm 20 weeks PFC and back at work and feel and look semi normal. I'm sure in time I'll be back to my old self. ❌⭕️

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    deememdoza--I worked out regularly up until last week's chemo. When I got on the elliptical on Sunday, I had to go down to half my level/incline and only made it through 15 minutes. It was exhausting! I'm happy to say that this morning was my second attempt at a cardio workout and I was able to run my 30 minutes on the treadmill without stopping. I'm not going to lie, it wasn't easy, but it wasn't hard like Sunday was.. My MO told me to keep the same level of fitness during my "good weeks". I'm more concerned with losing muscle mass. I feel with all the stomach problems and now taste changes, I'm the opposite, I'm losing weight. Protein, protein, protein.

  • Runner70
    Runner70 Member Posts: 177
    edited November 2016

    I ran all through chemo until after my last one then had to just walk- too short of breath and anemic to run. I eeked out a half marathon in between chemo 2 and 3 but I was in stellar shape prior to starting so I handled it pretty good.

    I kept a daily log of my symptoms and what I did for them so I would know what to expect and when for the next cycle. It helped.

    I like the description of big shed BS. Lol. I still get scalp burning 6 months out. This is all BS and we are the lucky chosen ones

  • willa216
    willa216 Member Posts: 162
    edited November 2016

    Javamama - haha on BS. Thanks for that.

    Tunegrrl - hope you feel better from the shingles. Yikes.

    Sarahrae - How is your hair doing? Besides being shorter ;) Also, do you mind if I ask how you're doing with Zoladex shots and Arimidex? I'm getting some conflicting info from my onc and am trying to make some decisions. I have kind of a complicated situation. Thank you!

    Runner - Your copper spots sound exotic and beautiful, actually! Still holding good thoughts for you for fertility..... On eyebrows, do you think the Lancome stuff will work if you have no brow hair? Actually I do have 3.

    Hazel - I agree with Pamela on the concept of the Dignicap's ease (not having done it so take with a grain of salt). I did Penguin. It is a lot of work and we were lucky to have a freezer. Can you try on the Dignicap at your infusion center to see if it fits your head properly? I think they come in different sizes? If it doesn't fit then Penguin is nice because you can really do a lot of adjusting. The cap's like a big diaper. Bleh. I'd get the extra gel bands so you can put them around the nape of your neck and pull around to front. Best wishes to you. It's scary but everyone seems to manage and you will too!

    On exercise, typically I do a lot of pilates, hiking and walking. My onc said if nothing else to try to walk 45 minutes per day during chemo to minimize side effects. I had weekly infusions over 3.5 months so I had only one or two days per week where I didn't feel horrible and then I would get chemo again. That said, I'm glad I did the walking even when I felt awful. I think it helped my body feel like things were somewhat "normal", because I was at least moving (not fast, to say the least). Also, my MO, BS and PS said to be sure to eat lots of protein. I didn't want to gain or lose weight - I did lose a few pounds but I look "fluffy", which goes nicely with my remaining hair :(.

    KD - Thank you for your uplifting message. So glad you're feeling a little bit more like yourself.

    Happy Thanksgiving to all.. I hope your holiday is filled with love. XO.

  • Hazel15
    Hazel15 Member Posts: 13
    edited November 2016

    Kshorten, YES!!,,, I would greatly appreciate any and all advice you can give me. I can't tell you how stressed, freaked out I am about this....so, the first Mo said he would give me taxol once a week for 12 weeks...then herceptin. I'm guessing then radiation and then hormonal therapy...I am seeing Dr's at Sloan on Monday.....2nd opinion . What I really am asking is the success rate between penguin caps and dignicap.

    Pamela23, I know it seems like a blessing but if there is even a one percent better success rate with PCC then I will go through all the hassle.

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