Cold caps?

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Albertan
Albertan Member Posts: 38
edited June 2014 in Canadians Affected by Breast Cancer

Just reading about cold caps and since I am desperate to try anything to save my hair, I was wondering if these are available in Canada?  Alberta?  If so, where?

And has anyone used them?  Any success?

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  • Rapunzelproject
    Rapunzelproject Member Posts: 2
    edited December 2012

    Canadian patients have successfully used cold cap therapy to save their hair! Two different systems may be available to you. Contact the manufacturers' reps for more info: Geralyn Pewarchie at 810-359-5257 and Linda Minuk at 204-955-2120.

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  • Luah
    Luah Member Posts: 1,541
    edited December 2012

    Albertan: Highly recommend that you talk to your onc about this. There are mixed views on cold caps. 

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  • Albertan
    Albertan Member Posts: 38
    edited December 2012

    Can only imagine what my oncologist would view of cold caps - she is so frickin' conservative, I would think she'd nix it.  From reading on this website, there are a number of folks who are really glad they did the cold cap thing.  Trouble is, I hadn't heard of them til this past weekend and I had my first chemo last Tuesday, so I guess I'm now too late - the damage has been done.  Too bad - I would have tried it!

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  • Albertan
    Albertan Member Posts: 38
    edited December 2012

    Thanks for this - what I forgot to say is that I had already had my first chemo on Tuesday so when I talked to the Winnipeg person, she said the damage has already been done and I'm too late.  So sad.

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  • marjie
    marjie Member Posts: 1,134
    edited December 2012

    My onc was strongly opposed to them because they restrict the chemo from you scalp area and there can be risk of mets developing in your scalp.  I wanted to leave 'no stone unturned', hair grows back, and I actually enjoyed the funky scarves and different head coverings. 

    Chemo nurses in my cancer centre have seen people using them but had not seen anyone who was successful in saving their hair - so who knows - perhaps the results differ with the treatments and dosages too...

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  • Hortense
    Hortense Member Posts: 982
    edited January 2013

    Cold Caps DO work. I used them this past summer and was able to keep my hair. 

    Clinical trials in Europe, where cold caps have been used for years, have shown that scalp cooling during chemo does not result in a risk for scalp mets. In fact, Great Britain's national health insurance plan pays for cold cap therapy during chemo which it would not if there were any real concerns about its causing scalp mets. Breast Cancer does not metastasize to the scalp. It goes to very well known areas like bones and lungs if it spreads. 

    While Cold Caps have been widely used in Europe, only about 1000 women have used them over here so far. Unfortunately few North American doctors and nurses are aware of them. Those that are often give bad advice about them as they are remembering the old ones from the 1980' that did not work.

    I had to switch doctors and hospitals in order to use Penguin Cold Caps and I am so glad I did. My hospital in NYC has had more than 40 women use them so far and is very supportive of those wanting to use them.

    There are several major centers in the US running clinical studies on various types of cold caps right now. Eventually, I hope, cold caps will be offered to every women who would like to try to save her hair. They may not be for everybody. They are VERY cold and as of now insurance does not cover their cost.

    Cold Cap user - kept my hair

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  • Albertan
    Albertan Member Posts: 38
    edited January 2013

    Yes, I keep hearing that they can work - not always but often.  In Canada, they are hardly ever heard of. 

    There are those scare stories that you refer to Hortense, where women are being told, generally by doctors who don't give two hoots about hair loss, that it will "almost definitely" metasticize to the scalp so don't use them.  Interestingly, but not unusually, it's the nurses who know about cold caps and seem to be somewhat more open to trying them. 

    Unfortunately, I think it will take years for them to come into any kind of standard practice in Canada - too bad. 

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