22yr old Seeking Cold Cap/Hair Advice

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TresBelle
TresBelle Member Posts: 2
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Hello, 

I am new here. A little about me: I am a 22yr old college African American college student living in NYC. I was diagnosed, stage 3 in November. I had a right side mastectomy with 6 positive nodes removed and a tissue expander placed on Jan. 27th. I am currently healing up and waiting to start chemo which will be followed by radiation, and then DIEP reconstruction, God willing! I feel good. 

I am here seeking any advice you have on the Penguin Cold Caps. I have mid-back/waist length hair that is relaxed. I've read the thread in here where a user by the name of Malaika shared her experience with the caps, but it was made several years ago. I would like to know any info you have on using the caps with relaxed hair. I am going to try to read the whole thread on the caps but it is several hundred pages long and I can't skim it for info specific to my hair type.

For example: I believe Malaika stated that her hair was natural and she used the caps at -36 or -37 degrees and when she used them at a cooler temp, it burned her scalp and she lost some hair. However, many websites suggest to cool the caps to -30. My hair isn't in it's natural state like hers, but I see there may be a difference in the way the general pop uses them versus the way black people use them. I'm looking for any info like this or anything you may have heard or can think of.

 Thank you for reading this and taking the time to help! 


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  • Ejef3
    Ejef3 Member Posts: 10
    edited February 2012

    Hi TresBelle,



    I am African American too with mid back length hair that is natural. I had my first infusion 1 week ago. My hair is really thick, so I am hoping the caps cooled my scalp enough to work. I will keep you posted

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  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited February 2012

    TresBelle, I suggest you contact Frank Fronda who invented the Penguin Cold Caps. He will give you an individual program specific to your hair type.



    He's evidently pretty good about responding to emails and phone calls.



    Pleas keep us posted! We are the cold cap pioneers - and they totally work! I have a full head of hair to prove it! I asked my oncologist is she was surprised at how well they worked - another member here spearheaded the use at my treatment center - and the oncologist said yes, she thought they might preserve SOME hair, but didn't think it was possible to save it all.



    She is really excited about it - I can see her studying my hair....

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  • tc9876
    tc9876 Member Posts: 136
    edited February 2012

    TresBelle, I am too investigating cold cap usage.  However, I wear my below shoulder length hair natural in twists.  My hair is thin and I have a number of parts.  Frank was concerned about me keeping in my twists due to 1)the cold giving me frostbite in the parts and 2)the twists preventing the cold from reaching my scalp.  I may give it a try anyway unless I find another option.  With respect to relaxed hair, the rep (Geralynn) indicated to me that chemical touchups are absolutely verboten not only during the chemo term but for 4 months afterwards.  In addition, there is to be no heat application (hair dryers, flat irons, pressing combs) for the same timeframe.  As African Americans trying to maintain a style other than an afro, our options appear to be limited.  I would LOVE to hear how those who have used the cold caps maintained their hair.

    How did you manage LadyGrey?

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  • Ejef3
    Ejef3 Member Posts: 10
    edited February 2012

    I think the key is getting that gel in the cap as close to your scalp as possible. Another African American lady told me she used a cut off stocking on her head to smooth her hair down. It has to be very sheer though so you can feel the cold

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