Has anyone tried the penguin cold caps?

Susiestn
Susiestn Member Posts: 13
in Breast Cancer #1
I saw the piece on Good Morning America about the cold caps that help keep your hair while going through chemo. I know I am more than my hair but if I can keep it, why not? Has anyone tried them? Any luck?

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    No..
    Everything I have read and told about from my oncologist says it doesn't work..but it certainly couldn't hurt to try if one wants to!
  • joannstar
    joannstar Member Posts: 403 Member
    #3
    My onc said NO
    and I want those chemo chemicals to reach all the way to the roots of my hair!! I also don't think it is cheap, but more than that, I don't want to take the chance.
    Yes most of my hair fell out starting on day 17, but now, 9 weeks out of chemo, it is growing back thick enough to not wear my wig or scarves. It came back very salt and pepper and everyone seems to love it even though my hair is only about 3/4 of an inch.
    Try googling penguin cold caps and see what you find.
    JoAnn
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #4
    You are in luck
    I know of a woman who wore the penquin cold cap and she is willing to talk to anyone who would like more information. Her hair did not fall out.

    Please make me your friend so I can private message you with her name and e-mail. You can then contact her directly. I also will make you my friend.

    Lots of Hugs,
    Janelle
  • PinkPearl
    PinkPearl Member Posts: 280
    #5
    My onco said no!
    The Penguin caps are getting a lot of attention but I would discuss it with your oncologist and follow what they say. I asked mine and she said absolutely no because she has treated many women for scalp mets that used cold caps previously, I am assuming in Europe where they are more commonly used. I had never heard of scalp mets but my onco. said she has seen numerous patients with them in her 10 years at M. D. Anderson. She did let me ice my fingernails and toe nails to try to prevent neuropathy but I am not sure she totally supported that use even. The chemo nurses said they did not agree with using cold caps either but if a patient brings it in they can't refuse to let you use it, which is why I think throughly discuss it with your own doctor. I think losing your hair is a minor thing compared to losing possible your life to scalp mets so I never pursued it further.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #6
    PinkPearl said:

    My onco said no!
    The Penguin caps are getting a lot of attention but I would discuss it with your oncologist and follow what they say. I asked mine and she said absolutely no because she has treated many women for scalp mets that used cold caps previously, I am assuming in Europe where they are more commonly used. I had never heard of scalp mets but my onco. said she has seen numerous patients with them in her 10 years at M. D. Anderson. She did let me ice my fingernails and toe nails to try to prevent neuropathy but I am not sure she totally supported that use even. The chemo nurses said they did not agree with using cold caps either but if a patient brings it in they can't refuse to let you use it, which is why I think throughly discuss it with your own doctor. I think losing your hair is a minor thing compared to losing possible your life to scalp mets so I never pursued it further.

    I agree with PinkPearl
    The reason that cold caps sometimes work is that they prevent the chemo drugs from reaching your scalp.

    If I was going to put myself through chemo, the LAST thing I was going to do was prevent the drugs from doing their job in any way!

    If someone I loved who had cancer wanted to use one, I would do everything I could to discourage her. Killing cancer cells -- wherever they may be -- is the top priority, IMO.

    Traci
  • cseear
    cseear Member Posts: 2
    #7
    penguin cold caps
    susie i just finished using the caps and they work. i had 4 rounds of cytoxin, herceptin and taxotere..every 21 days. i froze the caps using dry ice every chemo day andwore them for 8 hours. i had really thick hair. i have lost alot but everyone else thinks my hair is super thick still. i washed my hair every 3 weeks while doing chemo. i am washing it weekly now. i have been finished with chemo for 5 weeks. you can order them online. if you want to save your hair, put off the chemo until you get the caps. they will ship them right out. i left my email on another comment of yours...i am new to this sight...not sure how it works'
  • skipper54
    skipper54 Member Posts: 936 Member
    #8
    didn't try
    I didn't try the cold caps - shaved my head instead and treated my scalp well. I went through 4 rounds of the a/c cocktail and 4 rounds with Taxetere. My hair started coming back while I was on the Tax. Last treatment was the day before thanksgiving and I'm getting a hair cut next week. What I did do was try to take very good care of my scalp - washed it every day with my normal shampoo and used condition to keep skin healthy. I also used moisturizer every morning until the peach fuzz started to appear. I only wore hats and wigs when I went outside so kept my head as cool as possible that way. My onc. only mentioned cold things to eat as soon as I got home to help with preventing mouth sores. Also moist heat on the tumor site immediately after each treatment to draw chemo drugs there. I was classed as stage 3 when I started. The post-op PET scan was CLEAR.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
    skipper54 said:

    didn't try
    I didn't try the cold caps - shaved my head instead and treated my scalp well. I went through 4 rounds of the a/c cocktail and 4 rounds with Taxetere. My hair started coming back while I was on the Tax. Last treatment was the day before thanksgiving and I'm getting a hair cut next week. What I did do was try to take very good care of my scalp - washed it every day with my normal shampoo and used condition to keep skin healthy. I also used moisturizer every morning until the peach fuzz started to appear. I only wore hats and wigs when I went outside so kept my head as cool as possible that way. My onc. only mentioned cold things to eat as soon as I got home to help with preventing mouth sores. Also moist heat on the tumor site immediately after each treatment to draw chemo drugs there. I was classed as stage 3 when I started. The post-op PET scan was CLEAR.

    bumping up
    ....
  • Susiestn
    Susiestn Member Posts: 13
    #10
    cseear said:

    penguin cold caps
    susie i just finished using the caps and they work. i had 4 rounds of cytoxin, herceptin and taxotere..every 21 days. i froze the caps using dry ice every chemo day andwore them for 8 hours. i had really thick hair. i have lost alot but everyone else thinks my hair is super thick still. i washed my hair every 3 weeks while doing chemo. i am washing it weekly now. i have been finished with chemo for 5 weeks. you can order them online. if you want to save your hair, put off the chemo until you get the caps. they will ship them right out. i left my email on another comment of yours...i am new to this sight...not sure how it works'

    Cold Caps
    Thank you so much for reaching out to me. I have ordered the cold caps, actually they arrived yesterday, and I have someone helping me put them on and switch them all day. Questions: If you can't wash your hair for weeks, what do you do? Did you just go out with bad hair days? Can you put your hair in a pony tail (I have long blonde hair)? Just wear a hat over it? Can you get it wet in between washings? I'm not too worried as I have a wig being made for me as well but wondered how careful I have to be. I figure a bad hair day is better than a no hair day.
    Chemo is hard enough for me to wrap my head around and with small girls, who are freaked out to begin with, the idea of keeping my hair is worth the trouble.
    Again, thank you for letting me know about your experience. (I realize lots of people on this site are not in favor of it but I am!!!)
    Susie
  • lynn1950
    lynn1950 Member Posts: 2,570
    #11
    Silly me! When I read the
    Silly me! When I read the title of this post, I thought Penguin cold caps were something for preventing colds! Now, I've really learned something new. LOL. xoxoxoxo Lynn
  • motherofpatient
    motherofpatient Member Posts: 1
    #12
    Penguin caps
    Use Penguin caps. The others from elasto gel and Advance are poor knock-offs, don't hold temps, freeze like rocks, and require changing every 15 min. Before you get mixed up with Advance, check out the owners, Sandy Molenhouse and Mike Sweeney and Camp Coastal - it is a charity scam they ran after Katrina and the La. DA is after them.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #13
    motherofpatient said:

    Penguin caps
    Use Penguin caps. The others from elasto gel and Advance are poor knock-offs, don't hold temps, freeze like rocks, and require changing every 15 min. Before you get mixed up with Advance, check out the owners, Sandy Molenhouse and Mike Sweeney and Camp Coastal - it is a charity scam they ran after Katrina and the La. DA is after them.

    Lynn1950
    Lynn.Don't feel bad I thought the same thing.Cold caps for a cold???? I'm just getting over bronchitis.The cough is gone but it lingers.I thought I MIGHT try this even though I am worried about taking anything.

    Sounds like the caps work for some and not others.I will pass on it IF I ever need chemo.Didn't need it with Stage 0 DCIS.My sister is just finishing her 4 rounds of chemo.Her hair was always very very thin.Now it gone and she's worried about getting any hair back.I worry for her because I know she had the thinest hair.For me my hair is fine and thin but I feel it would grow back if I lost it.From what many say theirs grew back thicker.

    Lynn Smith
  • Hortense
    Hortense Member Posts: 4
    #14
    Cold Caps do work!

    I used Penguin Cold Caps this past summer at New York Hospital's Weill Cornell Breast Center and they definitely do work. It has had about 40 women use them so far and is very supportive of those wishing to use them. It has a large freezer to store the caps in which was donated by the Rapunzel Project which is a non-profit dedicated to helping women keep their hair during chemotherapy. 

    I met others both younger and older than me who used them and the caps worked for them too. I highly encourage anyone interested in keeping her hair to look into them. The caps are expensive and they have to be rented, so can't be borrowed from someone, but keeping my hair allowed me to keep a positive attitude which has been the best possible medicine. Keeping hair is not about vanity, it is about wanting to feel and look as normal as possible while battling a horrible diease.

     

  • lelaji
    lelaji Member Posts: 1
    #15
    Different Ballgame said:

    You are in luck
    I know of a woman who wore the penquin cold cap and she is willing to talk to anyone who would like more information. Her hair did not fall out.

    Please make me your friend so I can private message you with her name and e-mail. You can then contact her directly. I also will make you my friend.

    Lots of Hugs,
    Janelle

    Penquin Cold Caps

    Hi Janelle,

    I would love to speak with your friend that used the cold caps during chemo. I have been battleing Metastatic Breast Cancer for 14 years. I lost my hair in 1999 during A/C regime-So I know what it is like. I don't want to lose it again. I am about to start Abraxane which is a taxotere derivative and have been thinking of using the caps. I'm not worried about the cancer going to my brain as it's stayed in the bones for all these years. I would love to speak with someone and hear their experience-especially whether they got headaches from the caps and how uncomfortable they are due to their coldness.

    Can we e-mail privately (lelaji @ comcast.net) and I will be happy to supply my phone number.

    Thanks,

    Lela

  • dthompson
    dthompson Member Posts: 149
    #16
    PinkPearl said:

    My onco said no!
    The Penguin caps are getting a lot of attention but I would discuss it with your oncologist and follow what they say. I asked mine and she said absolutely no because she has treated many women for scalp mets that used cold caps previously, I am assuming in Europe where they are more commonly used. I had never heard of scalp mets but my onco. said she has seen numerous patients with them in her 10 years at M. D. Anderson. She did let me ice my fingernails and toe nails to try to prevent neuropathy but I am not sure she totally supported that use even. The chemo nurses said they did not agree with using cold caps either but if a patient brings it in they can't refuse to let you use it, which is why I think throughly discuss it with your own doctor. I think losing your hair is a minor thing compared to losing possible your life to scalp mets so I never pursued it further.

    Same here,
    My wifes Onco said

    Same here,

    My wifes Onco said no as it prevents the chemo from reaching the scalp which could allow cancer to begin growing in that area. We decided it wasn't worth the risk. God bless you .

     

    Dennis

  • Rsaguir
    Rsaguir Member Posts: 2
    edited May 2016 #17
    Cold caps

    i tried them and they did not work. I found they only delay the loss.  Can't wash your hair very well, can't brush or fix it in any way. Scalp get build-up and if you try to wash, more hair sheds.  It shed all the way till the last treatment and afterwards. With what was left, I wa sbetter off not having spent the money. Especially since they quoted one price and it was about 100 more each month.   I was part of a trial and from what I leanred, it wasnt working for most women.  I still think it's a scam.  It's very expensive false hope. 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #18
    FDA approval

    The FDA approved the use of Penguin Cold caps in mid December, 2015.  I would never consider it for all of the above reasons.  I was ok with losing my hair during chemo.  USUALLY the hair loss is temporary and your hair comes back.  In my case, it has been permanent (thank you, Taxotere), but even knowing what I now know and living with what I now have to live with, I don't think I would have chosen to try a cold cap.  They have bee effective for some women and some women have a really difficult time with any hair loss during chemo.  I like that women are becoming aware of this option as many have such a difficult time with hair loss.  Maybe some day no one will even have chemotherapy and hair loss will no longer be an issue.  Sigh.

    Suzanne

  • Kiki2016
    Kiki2016 Member Posts: 31
    #19
    I'm not using one

    I considered using a cold cap until I learned that my insurance would not even pay for a portion of it but they would cover a portion of a wig--go figure!   I believe it can be quite pricy.  I decided to just let my hair "go" and I literally started losing chucks of it on day 14 from my first chemo (as they predicted).  I cut my shoulder length hair into a pixie to try to ease the blow but then when it started coming out in chucks shaved it off by my long time stylist.  We both cried and then laughed (she had always wanted me to go shorter).  Good news--loved the short cut so my goal will be to get it back to that length post chemo. I met a woman at my infusion clinic and she is using it and having good success. 

  • Pearlthepig
    Pearlthepig Member Posts: 1
    edited April 2017 #20
    Is it too late to start?

    I just received 1st treatment and a gentleman in waiting area told me about the cold caps. Having already had the 1st treatment, will using the cold cap still be useful?

    Thanks for all the earlier post. Great input.

     

     

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