Cold Caps Users Past and Present, to Save Hair
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jc254- Yes, they are a service company that uses ElastoGel caps. I found it so much easier to have ready everything for me than to stress about gathering all materials by myself. Plus having a rep come to my first infusion was such a relief for my DH who was my capper. It made us feels so much better and answered any questions without just watching a video.
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Moderators -
I used Penguin Cold Caps and they worked very well for me. I was able to keep my hair. It thinned about 35% overall, but not enough that those who didn't know me well could suspect anything. In fact, I looked so normal that a few people, including a cousin, thought I was lying about going through chemo as I was not bald.
The caps were kept in a medical freezer donated to New York Presbyterian Hospital's Weill Cornell Breast Center by the Rapunzel Project. This Breast Center was one of five across the country to take part in the FDA's Dignicaps clinical trial. The trial is over, at least it is at this hospital, and the FDA results will be published at some point in the future.
You might want to contact Dr Anne Moore, the Medical Director of NY Hospital's Breast Center and the person in charge of the Dignicaps trial there. She is a strong supporter of scalp cooling. She knows a lot about what works and what doesn't: (212) 821-0550 http://www.weillcornell.org/physician/annemoore/i...
Rapunzel Project http://www.rapunzelproject.org
Penguin Cold Caps https://penguincoldcaps.com
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I used Penguin Cold Caps with dry ice in coolers. Saved my hair, and I am so grateful I did not have to go through that additional loss.
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Moderators- I also used Penguin Cold Caps with dry ice in coolers. I kept probably 60% of my hair (maybe more).
Also, the coldness of the caps does narrow the capillaries, reducing the amount of the chemo drugs that reach the scalp (which you already have posted in the article), but the cold caps also slow down the metabolic rate at which the hair cells absorb the chemo drugs, so less of the drug is absorbed.
No studies have shown an increase in scalp mets with patients using cold caps vs. patients who did not
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Moderators - I too used Penguin Cold Caps with dry ice in coolers and lost about 50% of my hair. Even with all that loss, I never needed a wig. I take Biotin and liquid Silica and my hair is growing in like crazy.
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You all have been a HUGE help! Thank you! We'll let you know when our info has been updated
Thanks again!
--Your Mods
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Moderators- I'm very happy to hear that you will be updating this information! So many will benefit with this knowledge.
Here is a link to all cold caps on the market, along with their pros and cons. Care for Hair
Most on this thread have used the Penguin cold caps but they are quite expensive and only available to rent. There are frequent internal problem issues within the company i.e., ordering, shipping, billing, refund of deposit. Elastogel cold caps can be purchased, owned and sold or donated when finished with use. The cost comparison PCC-$2,240.00-2,399.00 for 3 months minus a return of deposit of $500.00. A set of 8 Elastogels-$720.00.
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hi cappers!!
Wanted to report I survived day 1.
It was a little touch and go at first - that first cap delivered with no meds and all I could do was whimper as I lost all ability for rational thought as my head was threatening to explode. Cue very helpful Ativan and Percocet and all was good in the world again. Not sure how I didn't clock that -32 degrees would be REALLY EFFING COLD but there ya go. Thankfully it got much much better as the day went on.
Mods - I am using Penguin too. Looking forward to seeing how it pans out :-)
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Mods -
Another Penguin Cold Cap user (from 2009) I rented the caps from the company and purchased my own dry ice and cooler, thermometer etc. I did leave an extensive voice mail with the company before I started the PCC's and Frank Fronda called me from England and went over my questions on the phone! The company seems to have grown since then...
I used TCH and was very happy with my results. I had small amount of shedding and lost hair by my ears where we might not have had the caps on tight enough... No one could tell I was going through chemo by looking at my hair.
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RainDew~So glad you made it through ok today...I did the same thing you did on the first day. No pain killers as I did not think of that before capping. It was a quick learning lesson for me.
Hang in there and know there are good thoughts coming your way...
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Yay RainDew for making it through your first chemo with cold caps! You are right, that first cap is a b*tch...but glad you pushed through as it does get much easier once you get the initial "scalp freeze".
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you look amazing!! I hope my hair holds up!!!
How do you get your hair to be so straight and normal/great looking??!!!
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moderators- I will be using Penguin Cold Caps too...I start this week. I didn't use a service co, but PCC spells out what you need and all the wonderful women on this site have been so helpful with tips and advice...so you can be plenty prepared.
I got my caps yesterday...and will be practicing this weekend.
I will be using coolers and dry ice because the Dubin Center at Mount Sinai still does not recommend Cold Caps and does not have a facility for them. In fact, I am going against my Onc's advice and doing Cold Caps. I decided to educate myself and the risk is slight especially since I do not have node involvement.
For me, keeping hair is not just about vanity it's about privacy. No one knows that I had breast cancer except those I've told...and I don't think strangers on the subway or at my job need to know...unless I want them to know. I would like to maintain whatever degree of normalcy I can. I hate the pity face...or the question "how do you feel"...I feel perfectly healthy this whole time (ok except after the bilateral mastectomy). It's not like we're sick...just f*#*ing have cancer inside us! So if I can keep my hair...so I won't get the pity faced glances across the subway...sign me up!
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jennliza, you have a great attitude! We'll all be rooting for you.
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Jennliza, after your practice weekend, come back here with your questions. We'll help you through it. Don't forget to take some pain meds before your first infusion to help with the cold. The caps will feel a lot colder after dry ice than they do out of your freezer. Sounds like we forgot to offer that advice to Raindew (sorry!)
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thanks for the update on the PFC!! Love it!
Quick question--I'm using Dermorganics brand shampoo & conditioner--facial soap/lotion/body lotion etc....it's really getting on my nerves. Just very clinical--not what I'm used to. Any other suggestions for more of a "real" product? I'm afraid to switch b/c it's working ok just the smells are bothering me. I need more of a "girlie" product line. Lol
I'll look into the hair color pen! Thanks!
Mods--I'm using Penguin Cold Caps & using dry ice in coolers.
Anyone experience slight pain after the caps are off? I had a treatment on Thurs. It's now Sunday & right against the edge of my scalp & forehead there is a pain. Just wondering....
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hi ladies,
Wondering if anyone has any good tips for shampoo 'technique'? I get to wash my hair tomorrow (yay!!) and am trying to think through how to do least damage. I know no scrubbing scalp, and to water down shampoo.
Anything else?
Thanks!!
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ciaogina- I also had slight pain. My hair hurt to touch some days, which others have told me they experienced also. It seems tough now, but will be worth it to keep your hair.
Best of luck!
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RainDew, I found out this tip when I was almost finished chemo and it helped get my hair a lot cleaner. Get a plastic squeeze bottle with a pointed tip like the kind they use to apply hair color. I got one at Sally's Beauty Supply but some people just use red plastic ketchup bottles. Mix some shampo with water and shake. You can use the pointed tip to apply the shampo directly where you want it on your scalp without having to touch/move your hair too much.
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Raindew - I used the kitchen sink sprayer. Worked great and I didn't have to freeze my entire body when washing with cold water.
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How soon after treatment did you return to washing your hair more regularly. I've been washing about once a week during treatment and I'd like to be able to take it up a notch with the warm weather.
Also, when did your shedding stop after chemo was done?
TIA
Ann
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I'm preparing for my first treatment on Wednesday and I have been practicing with my cold caps. Have many of you used the headbands to cover the hair near the nape of your neck and by your ears? I feel like we can't get the caps tight enough above my ears and I'm worried that they don't cover all the way to the bottom of my hairline in the back. I saw a news clip where a woman used the headband instead of the velcro strap around the back of her head and up around the ears to the top of the head. We're going to practice one more time tomorrow night and try it with the headbands, but wondering if anyone has any tips.
- Kelly
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Kelly, I start this week too...but in our practice this weekend...we used the gel straps to secure the cap on the nape of the neck and above ears...then we used the black straps to further secure the caps. I've read that many have lost more hair at the nape of the neck and above ears....so think the gel straps might help that.
PatinMn...thank you!!! I hope my attitude remains the same after chemo!
JC254 and other ladies - what did you use to prevent the chin strap from hurting so much?
Shampoo/conditioner- I bought Beauty Withoit Cruelty rosemary/mint. It's Paraben Free, SLS free and PH balanced...but wonder if its ok since it is supposed moisturizer your scalp and prevent split ends.
And although not cold cap related, does anyone wear Organic Natural Mascara? Need a lil color on my lashes. And did you all ice your hands, feet and mouth?
I'm freezing just thinking about it all...
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Agness, you should be able to wash at least every three days. Everyone's different, but I continued to shed for three months after chemo. In fact, my shedding was heavier post chemo than it was during chemo and it got a little scary for a while. It eventually stopped and my hair turned out fine- I lost about 30% max. There doesn't seem to be any pattern that I can figure out as to who stops soon after chemo and who continues to shed for a while.
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Jennliza - I used a folded up bandana under the chin strap. My awesome local Penguin rep gets the caps on so perfectly that the chin strap isn't even necessary. But my own helpers, who were great, weren't quite as perfect getting the caps on and they sometimes would "ride up" a bit over the half hour. So I ended up using the chin straps, but not tight. Mainly important to use the chin straps to pull down on when each new cap is being placed and tightened, to keep it steady on your head.
I did not ice any body parts other than my head! I had no problems, but I did weekly taxol which causes fewer problems than most other chemos. Remind us what chemo you are getting.
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I didn't ice my fingers/toes/mouth and had no damage I used a piece of moleskin under the chin strap which helped. My chin strap was originally so tight I couldn't even swallow a sip of water but we quickly figured out that it didn't need to be nearly that tight.
The gel straps are supposed to help get a better fit at the nape of your neck and around your ears. They worked well for me at the neckline but not so much around my ears/front hairline. It's really hard to get a good fit around the ears/hairline and most women seem to lose some hair in that area.
If I remember correctly, there are two black velcro bands. One's supposed to go on the top of your head to tightly secure the cap to your scalp and the other goes around the bottom of the cap at the back of your head and up the sides to pull the cap tight. The gel band is supposed to go below the bottom of the cap in the back.
Good luck to everyone starting this week. The first cap change will be crazy but your helpers will get the hang of it quickly.
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Jennliza -
I took a bandana folded up and put it between the chin strap and my chin. Perfect fix for that freezing cold strap!
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jennliza, I also had a PCC rep my first day and she advised if we got the cap secure enough the chin strap wasn't needed - I just kept it loosely connected.
As for mascara, I use Physicians Formula organic, with the bright green top. I've continued to use it after treatment, too.
Good luck to all the new cappers this week - you will do great! I just spent the last 5 days at a beach bash with the gals in my BCO chemo group - we were in a discussion board together and became really close, we had a wild wonderful time on the gulf coast, just one year PFC...it will be here before you know it
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Hello all,
My MO told me not to bother with the cold caps because they don't work. Is that true? It's too late for me now, but I'm starting to not to trust her - eg. she wouldn't give me an opinion as to whether I needed chemo or not (great help she was). If she's also wrong about the cold caps - then I'm going to look elsewhere for advice. (btw, I'm slated for T/C x 4 if that makes a difference on the cap success rate).
Thanks.
Deb
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momtoirish,
I'm sorry your mo did that. There's nothing worse than not having faith in the person who's supposed to be saving your life! I fired my mo about 4 weeks ago. Best thing I ever did
I don't know if it's too late for you, a PCC rep would know better. Did you already start chemo? Is that why you say it's too late?
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