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Cold Caps Users Past and Present, to Save Hair

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Comments

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Hortense,

    Thanks. I'm going to be darkening my roots to cover greywith a non ammonia and also non peroxide color.

    I start in a week and a half on TH and have my fingers crossed

  • Jalsgal
    Jalsgal Member Posts: 25
    edited January 2015

    Hoping this will give hope to the new gals on this thread. This is me, 2 weeks post my final treatment. Very happy with my results! I had 4 TC treatments. My eyebrows and lashes have really thinned and I did lose lots of hair around my ears but nobody would know....

    Good luck! You will too be successful

    ..image

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Jalsgal,

    You look fabulous!! No one would ever know! Great to see it, this makes me feel so much better.

    I had to buy two big coolers for the cold caps I told the guys at sports authority they were cold wraps for a hockey team.

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Jalsgal,

    Love the chemo outfit and I'm trying to figure out how warmly I need to dress myself. I get cold easily and I'll have a port in so I can keep my sleeves down. Any suggestions on what I should absolutely have??

  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    suladog - I wouldn't color right before - even with no ammonia/peroxide. Still chemicals that are not needed. Buy style edit spray on Amazon, or Wow color powder, colormark, touchback, any of those root concealers will get you through. No point screwing with color right now.

    As for my lashes, I think my problem is that bc my natural lashes are so long, that when they thinned it is more noticeable. Following advice of another taxol girl who used Latisse throughout and never lost lashes. I did use Latisse throughout and didn't loses any. Then, PFC I stupidly switched to generic Latisse, Careprost and started losing lashes. It could have been that I was going to lose them anyway but I think it was the Careprost. So pissed now. I'm waiting and praying my natural length comes back.

    Jalsgal - beautiful!!! Love it!

  • suladog
    suladog Member Posts: 837
    edited January 2015

    DaniellaD,

    Ok, I won't let her color , there's a good root cover that a rinse I think non chemical . I'm on it. I use products already that are very mild so I'll stay off the color wheel, How soon after chemo can I color again? I'll be doing herceptin for 9mo and won't need the caps for that so I hear

  • suladog
    suladog Member Posts: 837
    edited January 2015

    DaniellaD,

    Also I don't want Latisse to change my eye color which I heard can happen. My eyes are gree and I'd like to keep them that way,

  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    it only changes your eye for if your putting the drops in your eye. You just put a couple drops in the cap and then use an eyeliner brush to apply to lash line. It's not going into your eyes like when used for glaucoma patients.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Suladog - PCC recommends not coloring your hair two weeks before. I was two weeks out and used dye that was free of everything. I went back to my natural dark color .... no highlights, no lightening. I think lightening your hair would cause the most damage (salons say its much more harsh on your hair). I colored my roots one last time and got rid of my blonde highlights ... so sad, cause I loved them :( So far, so good with my hair. A great recommendation was an electric blanket/throw. I got one at Kohls. Make sure you ask your facility if you're able to have one .... I remember someone on here had a problem. My place was good as long as the cord could reach an outlet. It kept me nice and cozy and I was not cold at all ... well except for the first 10 minutes when my head was freezing during a cap change :-/

    Jalsgal - wow, thank you, thank you. Each time I see a pic, I feel more confident that what I'm doing is the RIGHT CHOICE!!! Thanks for sharing. You look wonderful.

    Kim

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited January 2015

    Ladies - 9 mos. PF#@^#C Winking and I finally took Hortense's advice and tried the Nioxen # 4 hair care system that I purchased after a consult in the salon at Ulta. After only one use, my hair appears to be close to normal. Unbelievable! Everyone is noticing how good my hair looks. My husband asked, "Wow. What did you do with your hair? It looks great."

    JJKrav & Sula - I used Color Mark to hide the grey. It was OK. I waited to color.

    Jalsgal - Wow. You could do a CC commercial!

    I am so glad to finally read about MOs who are now recommending the caps. Many of us felt lucky for simply not being prohibited from using them.

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

    Jalsgal - you look wonderful!!! And so young, I swear you look like a teenager!

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    Here's the back of my hair two weeks after my last chemo. Note the dark roots!image

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    Omg Leslie, you're hair looks fantastic too. keep the pics coming .... you were all SO LUCKY to keep so much hair. hope I'm just as lucky :) everything else is starting to fall out except for the hair on my head! Yay for me! Thnx for sharing your pics. ♡ Kim

  • Jalsgal
    Jalsgal Member Posts: 25
    edited January 2015

    Thanks everyone! Really just wanted to encourage those that are just beginning to stay positive and BELIEVE!!! If you follow PCC's recommendations you should have no problem being successful.

    Suladog...I brought an electric blanket to chemo. I wore that same outfit every time which included a long sleeve shirt under the sweater and Uggs. I put my fingers and toes on ice during Taxotere to try to ward off neuropathy so I was pretty cold during that time. By the way, where in California are you from?

  • Jalsgal
    Jalsgal Member Posts: 25
    edited January 2015

    Suladog....I wanted to share something else. You mentioned you told the guy at Sports Authority that the coolers were for a hockey team? At first I wanted to keep things private also but as soon as I realized that the cold caps were working I wanted to spread the word! So many people have no idea that they could save their hair....

    Also, an acquaintance of mine heard what I was going through. She called to tell me she was thinking of me. When I told her about PCCs she wanted to help. She contacted every wholesale dry ice company in our area and asked for a discount for a "friend" who was going through chemo and explained to them why we needed dry ice. She ended up getting our dry ice donated for all 4 treatments. They even delivered it to our house the night before!! That was such a blessing and one less thing we had to worry about. So my point is, you never know who you might help or who might help you if you share your experience;)

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Jalsgal,

    Thanks! I got the coolers because I need to transport the caps from my house to the mos office to be put in the medical freezer a couple of days before my treatment. I don't need dry ice since they're going into a medical freezer several days before I need them. I am however telling everyone I know, and the people at the salon I go to about PCC . I've found that the woman who takes care of my hair has three others clients starting chemo and she took all the PCC info for them. I just didn't want to explain all my details to the kid in the cooler section who said "what are those?!" I'd brought several boxes with me to make sure I could fit them all in

  • Hortense
    Hortense Member Posts: 718
    edited January 2015

    Leslienva - your hair looks exactly like my 30 year old daughter's uber-expensive and hard to keep up ombre colored hair. It's all the rage in NYC to have darker roots like that and lighter ends starting where your's do. It looks great!

  • jennliza
    jennliza Member Posts: 176
    edited January 2015

    Latisse- my best friend is a medical director at Allergan ophthalmology. She said not to use during chemo that is won't help you keep your lashes....so wait and do after chemo. Also expect you lashes and brows to hold tight till the end...that is when mine went bye bye. But know they grow back pretty quickly. I literally had just 2 lashes left, one on each eye in @ Thanksgiving. Now my lashes are pretty full, just not full length yet. I started Latisse recently.

    Jalsgal - my hair was full 2 weeks PFC too.... I hope it doesn't happen to you...but consistent shedding for 3 months has left my hair not so full....but still full coverage...no bald spots. The hair above my ear and nape of the neck is where I have lost most of it...which adds body and fullness. I think I am going to buy halo extensions. They don't put stress on your hair... Look on YouTube how to use them.

    Hope- thank you for hair styling advice...the Velcro rollers...did you blow dry hair with them in. I've never used rollers...lol. I recently used a straightener and while my hair looks super thin...at least it looks neat and kept. But I imagine the heat is not good for the shedding... But it does last for days so am liking this way of styling it.

    I can't wait for my hair to grow in...shedding is slowing but still shedding 3months PFC :-/.

    Newbies- as much as I am complaining about shedding PFC, keep the faith....PCC works for most of us. I think not being able to wash/style your hair as usual takes time to adjust to and for us cold Cappers...the hair loss issues continue well beyond chemo.



  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    Jennliza, how long after chemo before I should start the Latisse? I'm nearly 3 weeks out. I still have lashes and eyebrows but they're thinning...

  • jennliza
    jennliza Member Posts: 176
    edited January 2015

    Have you seen any hair growth on the rest of your body? I would wait at least a month to 6 weeks...let chemo leave your body.

    My personal belief as to why hair sheds so much starting around a month after chemo has to do with the fight being over. The cells/hair follicles are being attacked by chemo...so they fight to stay on. Now that it's a month later and the attack is over the follicle can relax and gets weak....and falls out.

    Anyway, I would start when you see hair growth...

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    Jennliza, good to know. I'll wait. Thanks!

  • hope49
    hope49 Member Posts: 239
    edited January 2015

    Hello cappers, just trying to catch up on the posts after being out of town this week - you've all been busy!

    JennLiza, for the rollers, I first used a blow dryer on cool setting until my hair was just a bit damp. Then I carefully set it on the rollers and sprayed with some DermOrganic volume spray. Sometimes I just let it air dry the rest of the way, and sometimes I finished off with the cool blow dryer -both worked fine. Then just remove the rollers carefully, holding at the roots and gently unrolling and voila!

    Gatomal, congrats on your new babies! I cracked up when I saw that you posted it so quietly as you 'took a break from Taxol to have the babies' - you are a rock star!!!!!!!!

    RainDew, JalsGal, and Leslie - your hair all looks fantastic! I'd be happy to have hair like any of you on my best day :)

    RE: Latisse. I'm not sure it's an issue to use it during treatment as much as it may not really help to save the lashes if they are going to fall. I was planning to use it during but I had watery eyes for a few days each cycle that would then get bone dry, so I figured I'd leave that area alone. My brows and lashes thinned but never disappeared and filled back in within a few weeks of finishing treatment. A few ladies in my chemo group used Brian Joseph's lash/brow gel and seemed to have good results.

    Sending lots of love to those going to treatment this week!

  • suladog
    suladog Member Posts: 837
    edited January 2015

    Jalsgal,

    Thanks for the advice. I'm a bit nervous about the cold capping as it really new to me, but my drs all assure me that it really works well, especially since I'm having just plain Taxol and not a cocktail of drugs along with herceptin I should do fine. I'm in Sonoma north of San Francisco, but I go back and forth between there and LA.

    I had a meeting with the MO today and he talked to me about my path report and the fact that I fall in a grey area regarding treatment, that without anything but hormonal therapy I'd probably have a 90% chance of no recurrence. However, I move the odds to 98% if I do taxol and herceptin. I'm not a gambler so I'm doing this, no question it's worth it.

    I also hope that one of these days there'll be definitive proof one way or the other as to who needs to be treated and with what. He said they're hoping that they may be able to treat smaller HER2+ tumors with just herceptin. In fact there are trials going on right now. I have a friend who's a Japanese breast oncologist in Tokyo, and he told me they're doing studies over there right now.

    But here and now this is the best shot we've all got, and I have no desire to bet against HER2+

    I also wondered if anyone out there can tell me if it's ok to somehow arrange ones hair during the cold capping period as I have curly hair and if I don't figure out some way to wear it I'm going to look super unkempt for the next 3 mo. Any suggestions of any no chemical styling tips I can do to not look like a total freak?

  • kjybaby
    kjybaby Member Posts: 1
    edited January 2015

    Hi Ladies,

    I start chemo (AC/T) this Thursday. For those of you that ordered cold caps but chose not to rent the headbands, which did you buy? At the time of ordering caps, I thought it would be best to buy my own. However, I'm not sure on which to get to prevent burning and to covering areas that shouldn't be exposed.

    Any help is appreciated!

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited January 2015

    kjybaby - I rented the headbands from PCC. there was so much going on at my first treatment, we decided not to use them. Instead I made sure my husband put the black velcro straps tight around the back of my neck and around my ears. I've had a few strands fall out right behind my ears, nothing on my neck yet. I believe losing some hair there is common. I used moleskin on my forehead and mini pads cut in half on my ears to prevent frostbite. It definitely worked. Heading for Round #2 this week. Good luck. ... you'll do great. ♡ Kim

  • Gatomal
    Gatomal Member Posts: 418
    edited January 2015

    Kjybaby, I found the headbands really helped around the hairline. They are gel filled, and I don't think that much extra to rent. With the cold cap, the headbands around the hairline, and the two stretchy Velcro straps, I was able to get great close contact of cold caps to scalp. ACT is hard, I had great results, still have six taxol to go, but did my AC with no loss. I would recommend using something gel filled. Do you have another option? Lots of ladies still lost hair around ears and nape of neck even w the headbands I think. Good luck! I used puffy moleskin on forehead and thin moleskin on ears to protect from frostbite and discomfort. Cut to the perfect size for you and your hairline

  • CurlyG23
    CurlyG23 Member Posts: 25
    edited January 2015

    Jalsgal, You look great!, good job & I love your glasses.

    Leslie, Your hair is so full...don't worry about those roots, looks great

    I am hoping to hang on to what little hair I have left for my last 6 treatments, but It's very hard since I've lost so much, Thinking positive & wish me luck

    kjybaby, I did AC 4 rounds & now 12 taxol & chose the 4 headbands for extra coverage through Penguin CC...Not sure if it was the harsh AC, i think many here have had lots of luck doing it, but I've had mixed results...most of my bottom half of my hair has broken off & much of the left side of my scalp has small bald spots....still doing my sad comb overs, but it could be worse...I'm not giving up!


  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    Suladog, I found these hair bands that fit very loosely that I'm using to keep my hair back. Scunci makes them, and I found them in the drugstore with all the other hair accessories.

    Kjybaby, I rented the headbands but for my first chemo, we somehow left them at home! So we used bungee cords that we had for the coolers and they actually worked great! You can use moleskin to cover your ears, the sides of your face, and forehead so you don't get frostbite.

  • Leslienva
    Leslienva Member Posts: 343
    edited January 2015

    CurlyG23, I know some ladies have used Toppik to cover bald spots.

    http://www.toppik.com/

  • jc254
    jc254 Member Posts: 332
    edited January 2015

    kjybaby, the headbands you rent from PCC are gel filled and chilled like the caps and used to provide extra coverage around your ears and the nape of your neck. Some women don't get good coverage in those areas with the cap alone. You may or may not need them- depends on the shape of your head. I don't know where you would be able to buy anything similar.

    PCC will send velcro straps with your cap order. They are used to pull the cap tight to your head.

    Good luck.


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