You can keep your hair!

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  • Laura5133388
    Laura5133388 Member Posts: 577
    edited November 2012
  • Laura5133388
    Laura5133388 Member Posts: 577
    edited November 2012
  • Laura5133388
    Laura5133388 Member Posts: 577
    edited December 2012
  • Hortense
    Hortense Member Posts: 982
    edited January 2013
  • luckypenny
    luckypenny Member Posts: 150
    edited January 2013

    I looked into Cold caps and I think they are a fabulous option for those that can afford it and for those who mo will allow it.   I think alot of onc's are worried about scalp mets and will not endorse the use of cold caps.   I too was worried and upset about losing my hair, but now that its back , I am glad to have it. 

  • Hortense
    Hortense Member Posts: 982
    edited January 2013

    Scalp mets are not a problem with breast cancer, as the scalp is not where it regularly goes when it metastasizes. There have been a good number of cold caps clinical trials conducted in Europe that show it happening in less than 1% of the cases. As I understand it, that's less than heart issues caused by ACT which most doctors have no problems prescribing.

    Unfortunately, few doctors and nurses in North America are aware of cold caps and scalp cooling therapies, therefore they find it hard to believe that such a thing exists, much less that it works. I am hoping that will change as more large, well known cancer centers here conduct clinical trials with cold caps - there are several going on now. Once the results of those studies are published the information will be widely read and doctors and nurses will feel comfortable supporting their use.

    Cost is an issue. Rental for Penguin Cold Caps runs around $1,500 for two and a half months, plus shipping, dry ice and associated supplies. I believe that eventually, the cost of using cold caps will be covered by insurance - Britain's national insurance covers the cost for women who wish to use them there. Right now their cost does put them out of reach of many women here which is sad.

    On the other hand, it might not be insurmountable. I've been thinking that, friends and family might put on some fundraiser car washes, a few bake sales or a dinner to raise the money for them. I'd certainly do that for someone who wanted to keep her hair.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2013

    Great post Hortense, very fair and balanced about the pro's/con's of caps.  

  • Elastogelgirl
    Elastogelgirl Member Posts: 200
    edited January 2017

    Hi all,

    im using elastogel caps.

    completed round 2 of 4 ac treatments with 12 weekly taxol treatments to follow. Because I'm cold capping, My oncologist offered dose dense taxol on a two week basis for 6 times instead. Any advice on changing to dose dense two week interval taxol?

    Also I would love to get info about successes with my AC plus T treatment. I keep hearing with this type of chemo the cold capping is not going to work? No one at my cancer center believes it will work. It's worked so far I'm just thinning...I'm stubborn so I'm doing it anyway.

    Caps questions ;

    I started thinning little by little since the three week mark. I'm blond started with a lot of fairly thick strong and straight hair. During capping I start by wetting my hair and using a bit of cream rinse and arrange wet hair to to have no part line. I Just sort of streamline my straight hair backwards all over. I use a thin shower cap over this so the caps don't stick to my hair. I cap for about 6-8 hours. Starting one hour before, then for as long as I can stand it after.

    I did get a tiny bit of frostbite with flaking after the first capping. This was from frozen hard wrinkles in the top of the cap material. My cold cap crew got better at somthing wrinkles the second time. they also couldn't get them to -31f on the second round! On the second round the dry ice was not in cubes and was hard to deal with. I strongly recommend the cubes. The boys resorted to changing caps faster every 15 mins because the temp was only -21. I hope it worked I'm just a week out from that one.

    few questions. I really want to partially cover my hair on off days since it's a mess. Any suggestions on covering it with bandannas and or skull caps? I excersize and do use bike helmets and plan to use ski helmets when I'm feeling good. The helmets alone will rip up the hair. I've been using shower caps under my winter hats to avoid pulling.

    Also I've not figured out which shampoo to get in the USA.. How about leave in cream rinse for cold cap days? Or just water alone on cold caps days? I've been rinsing the cream rinse from my hair the night of cold capping..I read this is a no-no. I can't stand to sleep in a cream rinse head. Maybe I should just use plain water with the caps next time?

    Thanks for any input.

    I have

    Stage 3a invasive ductal carcinoma with lymph node involvement. Chemo- 4 AC plus 12 Taxol. Neo-adjuvant surgery to follow chemo. radiation, tamoxifen. I'm 53 years old.


  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2017

    Hi elastogelgirl,

    As you can see, this thread is not very active (2 years since last post!). Please come to the main cold caps thread where all the active cappers are, and repost your questions!

    https://community.breastcancer.org/forum/6/topics/...



    Here is also a REFERENCE thread (please don't post questions on the thread below, post only on the thread above as that is where active cappers are), for newbies to review:

    https://community.breastcancer.org/forum/6/topics/...




    Lastly, here is a "success" thread you may find inspirational.

    https://community.breastcancer.org/forum/6/topics/...

    Good luck!

  • Elastogelgirl
    Elastogelgirl Member Posts: 200
    edited January 2017
  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    I miss Hortense. I hope she is at peace. God bless her.

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