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Has anyone tried the penguin cold caps?

Susiestn
Posts: 13
Joined: Mar 2011

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?

MAJW
Posts: 2515
Joined: May 2009

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
Posts: 346
Joined: Nov 2010

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's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

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

lelaji's picture
lelaji
Posts: 1
Joined: Mar 2013

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

PinkPearl's picture
PinkPearl
Posts: 280
Joined: Oct 2010

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's picture
TraciInLA
Posts: 1836
Joined: Jul 2009

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

dthompson's picture
dthompson
Posts: 149
Joined: Nov 2012

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

cseear
Posts: 2
Joined: Mar 2011

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'

Susiestn
Posts: 13
Joined: Mar 2011

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

skipper54's picture
skipper54
Posts: 936
Joined: Feb 2011

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's picture
VickiSam
Posts: 8220
Joined: Aug 2009

....

lynn1950's picture
lynn1950
Posts: 2570
Joined: Jun 2008

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
Posts: 1
Joined: Mar 2011

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
Posts: 1265
Joined: Mar 2011

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
Posts: 4
Joined: Apr 2012

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.

 

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