Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Cold Caps Users Past and Present, to Save Hair

1…599600602604605…717

Comments

  • janetsam
    janetsam Member Posts: 62
    edited February 2017

    hi all, still following ya'll and quietly cheering you on! i am 6 weeks PFC and growing lashes and brows and see changes daily. also some thinned areas on my scalp have a shadow of hair growth now. yesterday i had my first follow up surveillance visit with onc. everything looking good. went for port flush in infusion room (they want me to keep port, 50% chance of recurrence especially in first year) and the nurses were very happy to see me and my hair! one nurse coordinator was especially interested as she has a patient who was asking about cold capping and she knew nothing to tell her. I am thinking that with the FDA coming out with positive news about cold caps it is just a matter of time befor hospitals have to provide this in order to stay competitive. my onc keeps saying it is cost prohibitive as it is a large state hospital (UNC Chapel Hill), but yet I know UNC tries to stay very competitive with Duke Hospital in many other ways. I hope to find a way to help women cold cap at UNC. I retired from working at UNC as a Psych NP last year when i got diagnosed and will start getting bored soon and will be talking to volunteer services soon. I have heard about Rupunzel, is this someone i should be talking to? wish you all good outcomes! janet

  • Unknown
    Unknown
    edited February 2017

    Hi Everyone! Thanks for posting! I'm always reading everyone's comments. It's really helped me learn more about the cold cap process......the good and the bad.

    Tomorrow is my first TC x 4. I choose the Penguin Cold Caps. My husband and mother-in-law will be my team and we did tried it out last weekend after reading everything and watching videos. We plan on doing a dry run tonight to make sure we got it down.

    I have one question: Should the chin straps be really tight? When we practiced and my husband attached the chin straps, I felt like I couldn't breath very well. We then put a small towel there and it helped but I'm wondering if it really needs to be super tight. I did watch one YouTube video of a lady demonstrating and after the cap was attached and secure, she undid the chin straps while the cap was on. Thoughts? Suggestions?
  • Luvmyys
    Luvmyys Member Posts: 67
    edited February 2017
    catgirl - you look great and would not even know you had chemo..awesome job.

    stlgirl - sorry you are here. I did PCC and after securing cap on head we undid the chin strap. It made me panicky to have it fastened. I did lose all the hair around my ears so don't know if that had something to do with it or the fact I have large ears and my rep put pads on them to keep them from getting frostbite. May have been too much to cool through once they were laying flat against my head.. I did a very harsh chemo, you'll do fine.

    I am 4 weeks PFC, time went really fast. Hair is very, very, very thin but no obvious bald spots. If you didn't know me you wouldn't think anything but that I have thin hair. My eyelashes are regrown and long (for now) on top lids, nothing on bottom. I used Latisse.I didn't lose all eyebrows but only the blondest hair remained. One thing that helped is I cut my hair about 1 1/2 inches last week and it made the biggest difference. I can put a little smoothing serum in it and after it dries naturally I run the flat iron on it real quick and light. It's a cute straight chin bob. Much, much better...shedding really slowed down, only got 10 strands last wash and I can wear it without a hat on the first day I wash it, days after it's a little too flat and stringy to go without the hat.. but much better than me refusing to leave the house. Started rads yesterday. Step by step!

    Hope all is well with this amazing group of women.
  • kechla
    kechla Member Posts: 181
    edited February 2017

    STLGIRL, I left my chin strap on, but I put a nice fuzzy sock between it and my skin once everything was in place. I felt like the cap would shift if I didn't leave the strap on. I also lost my sideburns and hair around my ears. Seemed like a lot of hair coming out, but it wasn't very noticeable. Also, something I did was to change my part with every cap change. Just a quick change with my fingers. I picked this tip up on this board and I think it helped. I did not have any noticeable thinning on my natural part. My thinning was all over. BTW, I am done now (18 weeks PFC). My hair was pretty thin, so I decided to cut it short while the rest caught up. But, I think the PCC's did a pretty good job.

    image

  • 301724
    301724 Member Posts: 185
    edited February 2017

    Hi all-

    I'm a voice from the past. Checking in to get some info from you. My institution is looking to 'institutionalize' the offering of cold caps. Yay! That's great news! What I'm looking for is info about whether or not your institution - or any you know of - uses volunteers to be cap buddies for folks who either don't have a friend/spouse/partner to help or who would appreciate having a cap helper with 'more experience.' Any info welcome. And thanks!

  • janetsam
    janetsam Member Posts: 62
    edited February 2017

    hi 30, as i just posted earlier, i had chemo at a very large State University center. The OB-GYN area where i got my treatment only had maybe 12 chairs but i took a look at where everyone else gets chemo there must have been at minimum 25+ chairs, huge area, maybe lots more chairs. So a whole lot of chemo is going at this hospital but when i talked to nurses and volunteers most had no knowledge of cold capping! none of the nurses had ever seen anyone do it in the area where i got chemo in OB-GYN. I think it is about to bust wide open though. i am hoping to volunteer somehow as this takes off. what system will your institution be using? I was thinking of somehow getting donations to buy caps and at least have the hospital provide freezers.

  • Unknown
    Unknown
    edited March 2017

    Thank you to both Luvmmys and Kechla! I'm going to try both your suggestions!

    I'm a little nervous for tomorrow.....first chemo and cold caps. The port is bothering me so I hope they can do something for me tomorrow with it or I just can't feel anything.

    I think my husband is more nervous than I am about the cold caps. He's concerned he'll not do it right but I'm not at all. I trust him 200% and know he'll so the best he can. My mother-in-law is coming to help as well.

    Thanks to all these ladies! I have read soooooo many posts and taken as many notes as I can with everyone's suggestions.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2017

    hi stl. Good luck with chemo tomm. The first time Is always the hardest. As far as the chin straps. I never used them. I would pull down on both straps while my caps were being put on my my cappers then leave them hanging. It didn't make a difference in tightness really.

    Catgirl. Your hair looks great. And u just have one more so your gonna end up fine.

  • janetsam
    janetsam Member Posts: 62
    edited March 2017

    Stl, I didn't' use the chin straps but i pressed down on the caps against my head a lot to be sure there were no gaps between my scalp and cap. I am a fidgety person so it gave me something to do. My husband was nervous too, more than me and I am usually the more anxious one. It went fine. good luck!


  • Catgirl2
    Catgirl2 Member Posts: 83
    edited March 2017

    Thanks for the kind words about my hair. Tomorrow is round 3 and then my last will be around March 22. I just hope the hair holds on! My eyelashes and eyebrows are thinning. I did start using Essential Eyebrow Solution to try to keep some eyebrows. They do have a efficacy study and I talked to one of their scientists. They are FDA cosmetic approved, but due to the cost of studies, they don't plan to move ahead on FDA Drug approval. I didn't start using it until after round 2, but they thought it would still help.

    For anyone using Cytoxan and Taxotere: When did you lose all of your lashes and eyebrows? I'm just curious about the timing so I can see if I wasted my money on this Essential Eyebrow Solution. If nothing else, it should help with the regrowth if I do lose my eyebrows. I know the lashes will be going!

    STLgirl: My fiance is usually more nervous about messing up than I am too! I'm like Janetsam, I push down on my cap the whole time. I just use moleskin on my forehead. I don't put anything on my ears because my hair covers them.

    301724: I'm the first cold cap user at my institution, so the are far behind on this. Once I'm finished with this, I plan to advocate for women to at least know they have this option. I would never have known about cold caps if I hadn't come across this website and group. I think that every breast cancer patient deserves to at least know that this option is open to them. I know it's not for everybody, but they should at least be able to make an informed decision. Having volunteers to assist with the caps would be wonderful for those that don't have helpers available.

  • Pamela23
    Pamela23 Member Posts: 394
    edited March 2017

    Catgirl-- you have my pattern of shedding and you cover it really well. After washing today, Id say I have 2 inches of roots around my part. Thank goodness for WOW!

    Janetsam--I feel like my brows and lashes are still falling out and I'm 6 weeks out too. I'm sure it has something to do w/ the chemo drugs themselves. Taxotere is so harsh!

    STL gilr--I used the chin straps so it was tight against the top of my head. Some women have thinning at the crown, I never did. Mine was on the sides underneath similar to Catgirl's pics. I would open my mouth when my husband put on the chin strap so it wasn't tight against my jaw which would make it hard to talk/eat and eventually give me a headache if it was too tight. Like Janet, I pressed down on the top a lot to make sure it stayed without gaps. The first time is the worst because of nerves but you'll find the chemo part itself is rather uneventful. Your husband has a big job ahead of him. My husband did an excel spread sheet to keep track of all the timing. It's a long day for him too! Make sure you take an Excederine migraine medicine that morning. The first 5 minutes suck but once you get through that, you don't feel anything. A neck pillow is a must and an electric blanket if you can. Also a rag or something between your skin and the skin strap. Good luck!!



  • willa216
    willa216 Member Posts: 162
    edited March 2017

    Thinking of you all.

    Congrats on being done, Hopefull and anyone else I've missed!! Such a great milestone.

    Wanted to let you know about haircolor - for those concerned with coloring after chemo. I waited 14 weeks to try a couple different colors - strand tests in two areas. I used my regular color (Framesi) and one that has very little ammonia and very little peroxide (Framesi Eclectic). These weren't necessarily the best options but I couldn't deal one more minute with any further pondering about what would be best. Neither one caused a problem and my head didn't explode. I ended up using my regular color. It didn't burn my scalp or turn orange. It did seem to grab the color a bit more than usual in the root area and now it looks like thatthan

  • willa216
    willa216 Member Posts: 162
    edited March 2017

    Thinking of you all.

    Congrats on being done, Hopefull, and anyone else that I've missed. Such a milestone.

    Wanted to check in on haircolor - for those interested in coloring post chemo. I waited 14 weeks and then did two strand tests with two different types of color. One was Framesi (my regular color) and one was Framesi Eclectic (very little ammonia or peroxide). These weren't necessarily the best options but I couldn't deal with one more minute of pondering and my stylist isn't imaginative. In any case, both were fine and my head didn't explode. I ended up using my regular color (Framesi). My roots seemed to really grab the color ( I have dark hair). It's starting to lift a bit now - maybe more than I'd like. It's not perfect but I can take the garbage to the curb without wondering if my chatty neighbors are out. Wow I was so worried about the state of my hair.

    Like Luvmyys I trimmed 1.5 inches and it feels a lot better. Longer bob length. When I was going through this capping process I was wondering if my crappy hair (terribly thin, frazzled, no body) could be saved or if I'd need to cut it all off (pixie). I'm using a ton of Acure Moisturizing conditioner (xo Tunegrrl) and very little shampoo 1x/week . My hair seems to be making a valiant effort to return to normal. At least on good days. It's not fabulous. I still like to wear it up or in a low pony so nobody can see the real deal.

    Eyebrows and lashes seem to be thinning again, which I guess isn't unexpected. Not amused.

    Love to everyone. You are all on my mind and in my heart. Wishing you good hair and everything else.

  • Unknown
    Unknown
    edited March 2017

    Thanks again for everyone on the chin strap suggestions! I'm probably going to try all of them. I tried a few last night but the cap was just somewhat cold from me putting one in the freezer for our dry run. I did have this urge to keep pressing on the top of the cap.

    My husband left to pick up the dry ice and I'm packing up.....it's like I'm packing for a weekend trip! There is a lot of stuff I'm taking since it's my first time....I don't want to forget anything nor wish I'd brought something.

    I appreciate all the words of encouragement and support! I hope I can do the same for others as well!

    UPDATE: My husband just got back from picking up the dry ice and they were very generous

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited March 2017

    Thinking about you STLgirl! That is so awesome about the dry ice! Where did you get it? My place isn't that nice. My fiance is there picking up now for my 1:00 chemo. Can't wait to say I only have one more left after today!

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited March 2017

    STLgirl, what great news on the dry ice! That is an expensive part of it. I get a discount of $1.00 a pound and need 40 pounds. So less than I thought it was going to cost. Hope things went well today, it really was a lot more trial and error the first day for me, yesterday, learned a lot about how things should go the next round. Let us know how it went for you.

    Catgirl, ONE MORE ROUND! Yea!!! So excited for you.

    Anne

  • deemendoza
    deemendoza Member Posts: 24
    edited March 2017

    Hello fellow cappers,

    I'm 5 weeks PFC and noticed that the HUGE daily shedding has slowed down by a lot for the last two days. I almost feel like its what a normal (whatever that is) daily shedding would be. I used the Artic cold caps.. Hope this little info helps for those beginning or ending using the ACC.

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited March 2017

    Can i just take a moment here and say the 4month pfc hairdo is a bit iffy sometimes. Browsing the internet, i have found the look that i want, and the look that i have.

    Want:

    image

    image

    image

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited March 2017

    Have:

    image

    image

    image

    image

  • janetsam
    janetsam Member Posts: 62
    edited March 2017

    tunegrrl with some extensions the look can be yours!

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited March 2017

    Thanks, janetsam :) that's a good backup plan i had not considered. Currently feeling annoyed i need to start tamoxifen. I don't wanna! (But will anyway.) Estrogen being the fountain of youth.


  • PatinMN
    PatinMN Member Posts: 784
    edited March 2017

    Thanks for the Friday afternoon laugh, Tunegrrl!

    Smile

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited March 2017

    tunegirl-Omg LOL HAHAHHAA I so needed this! or not! My trump comb over is probably going to look just like those vintage mullet 'styles' by ?sometime soonish I hope! Weirdly hopping for that 🤓! My hair is all bald spots underneath with a very thin front..the lower hair near my neck hanging in but the pattern balding is so scary. I'm getting a 'super shed' 1 week out from my second DDtaxol. It's not going to be much at left at this rate. Hideous! I too feel this protocol is stealing my youth! I guess I had too much estrogen! made me seem tens years younger but maybe gave me some aggressive hormone positive BC . Now I'm all dry skin no hair and hot sweaty flashes!

    I need to wash but so scared!



  • Catgirl2
    Catgirl2 Member Posts: 83
    edited March 2017

    OMG! That made me laugh, Tunegirl! As far as the Tamoxafiin,goes.....I was on it from 2003 - -2008 with my first b/c go round. I couldn't even tell I was on anything. I had no side effects at all. Now, they are going to put me on Arimidex.....not looking forward to that at all!

    Elastogelgirl: Trump comb over...LOL! Last pictures I saw didn't look anything as bad as that! I just had my round three of T/C. I'm supposed to wash tomorrow, but I'm afraid to! This chemo stuff is for the birds! I hope you're doing well otherwise!

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited March 2017

    It helps to hear that, Catgirl. I want to be one of those people, too, not noticing any side effects from tamoxifen.

    I see tamoxifen cream is a beauty cream thing. I might research it. Estrogenic effects on skin. Surprisingly, wound healing is apparently better on tamoxifen. And the bones thing.

  • kshorten
    kshorten Member Posts: 58
    edited March 2017

    Thanks for the laugh Tunegrrl, that's exactly what I think I'm going to look like too!

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2017

    tunegirl, those pics are on point. I look at everyone else's hair when I go run errands ect.. and thier hair looks like the first pics. Mine looks like I a mess and thin. Just want our hair to come in asap

  • Summer2016
    Summer2016 Member Posts: 104
    edited March 2017

    tunegrrl-----I'm still laughing!!! Just what I explained to my family how my hair will look as it starts to grow back lol......thanks so much for the laugh :)

  • Luvmyys
    Luvmyys Member Posts: 67
    edited March 2017
    Perfect Tunegrrl... those are hilarious..

    After all my whining I was able to pull it together and go watch my boys play baseball today.. with a baseball cap on imlooked pretty normal. This hair thing is weird, just when you think it can't get any worse.. it gets a little better.

    Almost 5 weeks PFC and got zero hair shedding at wash today. Does that mean I have no more to lose 😀 or the shedding has slowed.. whatever it is, I'll take it.

    Happy Weekend Ladies!
  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited March 2017

    that's great news, Luymyys! Sounds like you're coming through to the other side.

    Hard to imagine baseball here right now. It was a gloriously sunny but crisp -29C with the wind chill here this afternoon (-20F). The other day it was walk-backwards-to-school cold.

    I hope everyone is keeping cozy :)

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.