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Cold Caps Users Past and Present, to Save Hair

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Comments

  • mdg
    mdg Member Posts: 1,468
    edited June 2011

    I just PM you back....I too am trying to color this week....I am scared to do it but hate the nasty roots.  I can't look at them anymore...I feel like a frumpy old lady!   Someone tell me my hair won't fall out!  I was going to use the Loving Care line...going shopping later today to try to find it.  Did you ladies color it yourself or have someone apply it for you?  I don't know how to not get it on my scalp when doing the back part....I don't think I have anyone to help...other than DH.  Good lord I am too embarassed to even have him see my hair and the gray up close.......not sure he has colored hair before either.....just another bonding moment of BC.  At least it's better than when he had to help me with an enema post OP!  I am trying to find humor in all of this somehow.......

  • Julia1969
    Julia1969 Member Posts: 85
    edited June 2011

      I have dark blonde hair with some grey naturally that was made blonder with color.  I had a case of the dark roots and hag look I couldn't stand.  The non peroxide colors at the stores only deposit color and will not lighten hair.  If you are trying to color to darken your roots, you can use those temp colors or coloring shampoos.  They don't work as well on grey hair as on a naturally colored hair. 

       I had a professional color job at 2 1/2 months post chemo and at 5 months post chemo.  At 2 1/2 months out I was still shedding, but did not shed any more than usual from the dye job.  A few weeks after that I slowed and then quit shedding.  It is my understanding that the professional dyes are easier on hair.  It certainly didn't tingle like the ammonia or whatever it was in the Garnier Nutresse I used pre- chemo. 

       My advise to you is to use the best product you can find to be easiest on your hair, even if it is with a professional and costs more for a few months.  I remember sweating bullets at the hair salon, but walking out feeling like a million bucks.  Best thing I could have done for myself was to invest in a professional dye job. 

  • sashasz3
    sashasz3 Member Posts: 97
    edited June 2011

    I am going to a salon for color---too scared to do at home dye---wish me well--I could use the boost in my life right now---finished rad==now on tamox--(hate it)  broke my hand so--boost will be welcomed !!!

  • mdg
    mdg Member Posts: 1,468
    edited June 2011

    I want to do the salon thing but my hair dresser is on maternity leave...ugh! She knows what is going on...to have to go in there and explain all of the cold cap crap to another stylist seems exhausting!  My stylist's SIL did cold caps so she knows all about it....it would have been much easier just dealing with her.  I will call the salon this week and see if the owner can do my hair.....

  • Ang7
    Ang7 Member Posts: 568
    edited June 2011

    Good luck with the hair color...

    I had mine done at a salon I think it was 4 months past chemo?  She used the most gentle natural products she had.  My main concern was the darn shampoo girl who I had to ask repeatedly to stop yanking my head around!  She asked if I wanted conditioner and I said no.  I just wanted to get out of that seat fast!

  • Patwriter123
    Patwriter123 Member Posts: 5
    edited June 2011

    Hi,  I was wondering if anyone could shed any light on my current condition of my hair/scalp now that I have completed my chemo treatments.

    My hair was shedding quite a bit around day 24 of my 8 treatment every two week regimen, but looked fine until the 7th treatment when I noticed hair being lost at the top of my head where the cold caps were the coldest (-32 degrees) with a lot of flaking.  Now that I have completed all 8 treatments, about 90 percent of my hair has fallen out with extreme flakiness.  Is it possible my scalp got frostbite, which caused this to happen?  I would love to know if anyone has gone through this or knows anything about it.  My husband said that near the end, my scalp was purple, scabbed, and bleeding in spots.  I am afraid to wash my hair or comb it, and would like to know if there is a cream I could use to help this condition.  By the way, the first four treatments were andromycin and cytosin, and the last four were paclitaxol.  I had neulasta shots the day after each treatment.  Thanks in advance for any information you could provide!    

    Also, I have two 60 quart coolers (Igloo brand).  If anyone who lives near me (Massachusetts) will be starting chemo soon and will be using the cold caps and could use the coolers, please let me know.  They were given to me by a cold cap user, and that person asked me to hand them on to the next person in line.

    Thanks,

    Pat 

  • mom23boys
    mom23boys Member Posts: 1
    edited June 2011

    I was wondering where to get these caps in Canada.  Do they work on really curly bushy hair. I would love to hear from anyone in the Toronto area.

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    mom23boys:  You have to order them from their website.  They are shipped from the US. 

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Hey Past Users:

    I am 15 days post second TC.  My scalp is sooooo itchy and sensitive to touch and there is some sebum buildup on the scalp.  It is shedding quite a lot today, more than the past few days. 

    After the first tx I noticed signficant shedding on day 18.  My hair has been shedding consistently since then, until today, it is heavier today. 

    Tomorrow I will wash it but it is everything I can do not to touch and scratch my scalp.  I hope its not on the verge of a huge shed!!!

    Patwriter:  Did you say 90% of your hair fell out?  That is quite a lot, or did 90% of the flaky sections fall out. 

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    mom23boys - i'm in Windsor and am using the caps.  IF you contact frank at Penguin Cold Caps .. he'll find caps for you.  Mine came quickly from Montreal.  If you want, i can contact my rep to see if she can help.  Let me know.

  • LivCar
    LivCar Member Posts: 153
    edited June 2011

    DebRox - i had the same itching and flaking.  I did my best to leave it alone and the flakes went away.  I still get very itchy.  It's likely from the lack of washing.  Try not to touch your hair too much while it's shedding.  I think i lost too much by over combing and trying to constantly pulling the falling pieces.  Clip it up and don't think about it.

  • yizbieta
    yizbieta Member Posts: 77
    edited June 2011

    brca1babe

    YES, the caps are very cold- that is a good thing! You (not you, but your helpers), have to knead the caps to get the temps even and keep checking as to when they are most even all the way across (not perfect). If you take 2 Tylenol (or something similar), extra strength, just before you get the first cap on, you will take the edge off a little but the freeze only lasts a few minutes anyway, such as 10, at the most (for me anyway). Each time there is a new cap placed on, it is cold again for a few minutes....but that goes away more quickly because your head/scalp is frozen, or nearly. It is not easy. Just effective. Good luck~~

  • yizbieta
    yizbieta Member Posts: 77
    edited June 2011

    DebRox- I had that too and it was awful after the first few treatments.  It eventually calmed down after treatment number four- for some reason. I switched the type of shampoo (still the required pure stuff), but a dermatoligist told me it was from not washing enough....Do your best not to scratch too much. I had flakes like crazy- huge! and sores too, on my scalp for a couple of weeks at a time each time. So far, this last treatment, I just have some minor itching and no flakes yet. Could still happen though. I am only five days past last treatment.

    Good luck!

  • mdg
    mdg Member Posts: 1,468
    edited June 2011

    Elizabeth:  Congrats on being done!!!  I got off easy...I didn't get the itchy flaky scalp.  My hair follicles would hurt though..almost felt like I had put my hair in a tight ponytail all day or something.  The were sore a lot while I was shedding post chemo too.  Now that pain is gone. 

  • brca1babe
    brca1babe Member Posts: 38
    edited June 2011

    well today is the day ladies!  my first ddAC with caps.

    my husband and I stressed out yesterday trying to get everything right for the caps and probably worried too much about temperature variations, how to pack the ice etc.  I have now decided to let go, give it a try and just feel good for doing this project to help myself and hair.  it may not work perfectly, but I am trying.

    reading your posts has been enormously helpful.  I have gone through almost all 120 or so pages!

    I find the ladies on this thread are very positive, upbeat and proactive.  that's a penguinista!

    thanks!

  • Patwriter123
    Patwriter123 Member Posts: 5
    edited June 2011

    Hi DebRox,

    Thanks for responding to my posting.  Unfortunately, 90 percent of my hair did end up falling out - mostly during the last treatment.  I still have major 1/4 inch flakes on my scalp that are starting to come out and get stuck in my hair.  It looks pretty gross, but I don't know what to do about it.  I'm afraid that washing or creams might make the sparse hair I have left fall out.  I certainly hope that you or anyone else does not follow down the same path as me when all is said and done. 

    I had long straight hair - down to my bra strap. Its consistency was fine, with a lot of hair strands.  I routinely dyed it blonde once a month before finding out I had cancer, so maybe that weakened it beforehand.

    I also read on this web site that having moisture on the cold caps when applying them to your head can cause bald spots to appear, and that appying a thin layer of gauze is recommended when this happens.  Additionally, I'm wondering if the harsh chemo I was getting contributed to the lack of success in the end.

    I don't know - I'm just baffled.  My husband followed the same routine throughout my treatments, with perfect timing and temperature before, during, and after all chemo treatments.  I really thought I had succeeded in keeping my hair to the point that no one would have been able to tell I had cancer, and received compliments from the nurses at the hospital, until the very last few treatments. 

    Feel free to send me a PM if you'd like.  Or, I am available by phone if you ever want to talk.

    Pat        

  • kriskat
    kriskat Member Posts: 116
    edited June 2011

    Finished treatment yesterday!!!! I can't wait to be able to scrub my head

    - even though I know it will be awhile! My scalp is super dry- have never had dandruff before this . You seasoned vets; exactly how long should I edit before scrubbing the scalp? V

  • arlenea
    arlenea Member Posts: 1,150
    edited June 2011

    Hip, hip hooray KrisKat!  Great feeling isn't it.

    I'm now 24 days PFC and can't wait until I can wash normally.  Now, I have all those markings on me for Radiation that I am not supposed to get drenched so I've been putting off washing my hair so they don't fall off but today, I'll just have to do and and be very careful to not get those wet.  The one between my boobs is tough to tape up to keep dry.  Oh well, always something huh!

    Still just light shedding and hoping that doesn't change.

    Arlene

  • mdg
    mdg Member Posts: 1,468
    edited June 2011

    As far as the moisture issues, we wiped down each cap completely with a towel before I put it on.  I did not have any issues with moisture.  I also moved my hair part every time we changed caps to make sure my partline was not getting over exposed.  Parts of the top of my head and in the back on top got very sensitive during my whole time on chemo.  Now that feeling is completly gone and my scalp feels normal.  I did not have any dandruff or flaking....how did I luck out?  I used Burt's Bees shampoo and conditioner - FYI.  Here is a not so flattering photo of me 7 weeks PFC with my newly exchanged implants......Note:  In true Penguinista form, my hair is air dried with no styling,  frizzy, with 2" long roots and a headband to cover some of it up :)  (blech!!!!) But you know what...IT'S ALL MINE!!!  I am happy about that....(smiling)  Oh and the wind was blowing so it is making it look shorter than it really is..FYI....no hair extensions in this photo either (I think my last photo had a hair extension in)

    7 weeks PFC

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Elizabeth:  Congrats on finishing on the 24th.  I hope all is well and SEs arent too bad.  You must be so happy to be finished and moving on to the next stage of treatment.  All in all, how would you say your hair did through treatment. 

    I had to wash this morning and a lot came out in the shower and after.  But my scalp feels clean, it was driving me crazy with build up and itchiness.  I know for me, I am not washing enough, but whatever it takes to keep the hair.  My next tx is Tuesday I am already starting to feel anxious.  I just want them all over with. 

    Keep in touch and let me know how it goes with rads. 

    brca1babe:  the cold cap girls are inspirational, positive and upbeat.  Keep checking out this thread.  I know it keeps me sane throughout tx.

    Livcar:  thanks for the tips.  It is hard to resist itching, but I will.  It seems like day 5 is when the itching starts and it is very hard for me to last to day 7 for a wash.  So far I havent been able :(.

    Patwriter123:  I am so sorry to hear that the majority of your hair fell out after your last tx.  That must be incredibly upsetting.  I too had blonde hair, not as far as my bra strap, and I had a full weave every 6 weeks.  The individual strands are weak and fine from all the years of processing.  About a month before tx I had my hair bobbed and colored close to my natural color dirty blonde, I hate the look, but anyways.  My end game with the caps is to prevent permanent hair loss.  It feels and looks thin right now and without proper styling it doesnt look great.

    My helpers are wiping the caps down very well between changes and they place gauze on my part to prevent frostbite.  However, I do have that build up on my scalp which I think contributes to the shedding, but it is an oily buildup rather than flakes.  Maybe the follicles cant breath or are congested.  Who knows. 

    After my first tx, I did frostbite/burn my temple.  It is discolored, tender to the touch and the skin flaked off.  Pat, I wonder if you did burn your scalp with extreme cold?  I certainly hope that your hair starts to grow back quickly.  I wish you all the best. 

    Kriskat:  I know the feeling, I want to scrub my scalp very badly.  Just clean off all the gunk!  I'll be interested to see when that is possible!

    Wow Arlene, 24 days already, how time flies!  I have been following you for a while as you were in mid tx while I was researching the caps.  Glad to hear all is well.  Let us know how rads go.  I have some decisions to make re: rads vs mx.  It is a huge decision and not sure what way to go.

    I developed painful cording after surgery and I hear that rads can aggravate the cording to the point of LE.  I feel as though I am disabled right now and I am limited to what activities I can do, really nothing with my upper body :(, I am a very active person.  I do not wish to further damage my arm via rads, so I may have to opt for MX  instead of rads.  One thing after another.  I hate wishing time away, but wish it was 2012 and all this was over with!

    Take care everyone else.  Keep capping!

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Great photo Maria.  You look awesome! 

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    Maria; You look absolutely GORGEOUS!!!:-) I ordered my caps today yyaaayyy hoping to get ehm delivered by tuesday next week ready for day one of chemo on thursdya 7/7:-) my girlfriend is flying in from OH to help out and be with me on my day 1 so I will ahve 2 helpers (DH & friend)... I am feeling very anxious and nervous (naturally:-) You aldies have been GREAT in giving feedback and encouragement. Thank you so much!!!

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited June 2011

    MAria, you look absolutely GORGEOUS!!!! I ordered my caps today YAAAYYY hoping to get them delivered by tuesday next week ready for day one of chemo on thursday 7/7!! My girlfriend is flying in from OH to be with me and help DH:-) how nice of her, i feel so blessed. I am feeling very anxious and nervous (naturally) I am trying to occupy my mind with the long weekend and my son's and my bdays:-) he'll be 3 on friday and I'll be 38 on monday:-)

    You aldies have been so wonderful in giving feedback and encouragement, THANK YOU!!

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    MDG you look beautiful! Thanks for sharing the pic. How do you post it? I can never figure it out. I

    Patwriter I am so sorry to hear you lost 90%, I do think the the A treatment is much worse for hair than the TCH treatment but you won the battle! Chemo did not take everything! 

    I am 5 week out from PFC and still shedding, some days worse than others. It has slowed down but I have a few bald patches on the top and back. Luckily I can cover them up. It is so weird I use to have a head of thick hair and now its thin, feels weird. Luckily, it looks normal to anyone else except me or everyone is being incredibly kind. 

     http://s1211.photobucket.com/albums/cc421/nmoss1000/

  • mdg
    mdg Member Posts: 1,468
    edited June 2011

    Thanks ladies...I should have at least waited to take a photo on a day where I actually tried to do something with my hair!  Oh well.....I am off for surgery again so I don't often do anything to myself these days....which is nice because my roots are out of control!  At least I don't really have to go anywhere the next few weeks while I recover. 

    NMoss:  Your hair looks so good!  It looks thicker than my hair was before I started this!  To post the photo, when you are typing a message, look up right above the box you type in and there are some icons.  The icon to the left of the smiley face is the one you click on to insert a photo.  Once you click on it, a box will open up and it will ask you for the url.  Just get the url from the site where you have the photo hosted and copy/paste it in there....it is that simple! 

    Snoopy:  So glad.....you sound ready to go!  We will all be here cheering you on!!!  You will be posting your PFC photos soon - just wait!

  • arlenea
    arlenea Member Posts: 1,150
    edited June 2011

    Maria/NMoss:  Great pics.  You two look wonderful.  My hair is too thin (IMO) to wear down so no pics yet but the top looks fine - bangs are really long though.  I keep the hair back in a scrunchy and no one can tell but wow when it is down, thin, thin, thin!

    Thanks for the instructions on posting pictures.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    MDG - Thank you for the instructions! I feel lucky to have had allot of hair to start with but I am not out of the woods yet... Shedding continues!

  • Sashette
    Sashette Member Posts: 75
    edited June 2011

    Maria/NMoss:  Great pictures!!!  Great hair!!  BRAVO!!  You both look wonderful and vital....    Thank you for posting your pics...

  • BHodges
    BHodges Member Posts: 10
    edited June 2011

    Maria and NMoss- you look beautiful!! You both defintely don't look like you just finished chemo! Thanks for sharing your pics, it's nice to see everyone :) .....How long are you going to wait to get a trim? 

     Good luck Snoopy, we will be thinking about you!

  • dexxy
    dexxy Member Posts: 88
    edited June 2011

    Hi Ladies!  I've just signed up for my first treatment  7/7/11 and I'm wondering has anyone out there used the DigniCap?  I'm doing a trial at UCSF and it seems to have great results but would love to hear from someone who has used it. I feel very lucky to be able to have this treatment and I only hope we see more of these machines Smile

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