Cold Caps Users Past and Present, to Save Hair
Comments
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thanks for posting the link, Kazzy. Hopefully it will help get the word out to more women. That's how I found out about cold caps - my friend's sister had seen a cold cap story on the local ABC station and remembered enough to cause me to do an Internet search. And I love the daughter's project to raise funds to help women who can't afford the cold caps
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I really like the doctor's reaction too. Like many, she was skeptical at first. Now she's a believer.
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Hi all, I haven't been on the list in a while...I joined the list on page 16 when there were just a handful of women in the US who had used PCCs. 5 years later it's nearly 500 pages and thousands of women's lives have been changed. Without this group, I literally had nobody to support me besides my brave husband. We had no idea whether this would work or if it was a gimmick, we only knew we were willing to throw absolutely everything at cancer and chemo in order to get through it. How thrilling to find that cold cap therapy indeed works. Though it's been well over 5 years, I still remember exactly what it was like to recieve my breast cancer dx and learn I'd need to go through chemo. I remember madly googling for any possible way to deal with the most devastating SE of chemo, hair loss, and I remember stumbling upon the Penguin site and then, at Frank Fronda's advice, this list. It changed my life and I remain committed to coaching women and helping spread the word. I still have a writeup which I can email (too long for a PM), just send me a msg. with your email.
Great to see some more national coverage. And greater still to see this community remains so strong and so many women are paying it forward. I wish the whole world worked this way.
Best,
Susan0 -
Hey Susan! You sent me your write up 4 years ago - you were one of my mentors, along with mdg and several others. Great to hear from you, and thank you so much!!!
I, too, wish the whole world worked this way!
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Susan I am reading this list from the beginning and I'm so glad that even after 5 years you still come on this site and post, it really helps those of us who are still going through it to see someone who is 5 years down the track who can answer questions for us. Thank you
Silvana
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MIMomma1, I look forward to your PM with more info on it. I am planning to do a dry run with my husband and helpers to see how the ElastoGel caps feel when frozen. They do fit me when warm. Seems like I need an ace bandage or similar to keep it down tight at the crown. Did anyone use elastic or an ace bandage and how do you keep it from being too tight under the chin?
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Susan I would love to see your list it sounds great. I sent you my email. From what it seems it has been super helpful to others. Thank you for being so generous to others during their journey.
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MadisonMom, PCC sends along a stretchy strap (about the width of an ace bandage) with velcro on either end to tighten the cap in trouble spots. Since timing is so important and you have to make cap change pretty quickly, I'd see if you can rig something like this up rather than trying to mess with tying or looping it. The straps from PCC are pretty hardcore stretchy. It's possible you could rent just the straps from Geralyn or one of the other PCC reps. I don't know how the Elastogels fit, but they definitely helped with the PCC caps.
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Hey Susan,
Good to hear from you! I joined the list on page 3 of this group and I agree with you that I would not have made it without the support of these ladies. Using the PCC's was the best thing that happened to me during cancer treatment. Frank Fronda worked with my doctor on the protocol and encouraged her to let me try them. I was able to save all my hair except right by my ears. I am so glad that I found PCC and BC.org. I am spreading the word in my part of Virginia...
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Hey MadisonMom--I sent you a PM on the 14th. Did you not get it? ---MiMomma
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sebm9 my email is orcuttpeg@gmail.com. Thanks!
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On our first cold capping day, we somehow forgot the elastic straps! My husband ended up using the bungee cords we had on the coolers and they actually worked great!
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Just wondering I am 7 weeks PFC and 2moro is my kids Sports Carnival at school as I will be in the sun all day can I wear a hat? I was told by PCC that there was to be no heat hats included but I don't want to get sunburned either.
Leslienva glad your 1st chemo went well and you could improvise good luck for the rest of your treatment.
Silvana
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AussieGirl, I wore aa baseball cap on occasion while actively receiving chemo and noticed no ill effects. I made sure the back strap didn't have any Velcrocro to grab on my hair and didn't fit it too tightly. Just sharing my experience - I know Penguin doesn't recommend, but like you, I didn't want to sunburn my head either.
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Thanks wildflower
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MIMomma1 I did get it - was a little hazy about pm-ing at first. I sent you a pm reply today with many many thanks and a few more questions.
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AussieGirl carry an umbrella! It gives you more shade than a hat and won't heat your head up so much. I did it all the time at my kid's soccer games and also just walking around.
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I also wore a hat through chemo now and then when my hair looked gross....no issues for me either
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Aussie-girl, I wore a hat for a week while in grand cayman between chemos 4 & 5 to no ill effect. The sun was so intense that I thought the hat would be better than sunburn on my scalp. I spent my 5th weekend PFC on a lake and wore a hat all weekend long too, again to no ill effect.
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Aussiegirl, I wore a hat when I was in the sun - hiking, going to baseball games, etc. - and had absolutely no issues. Your head gives off an incredible amount of heat; having a sun hat on for protection may actually help your head from getting even warmer in the sun. You can always dab your head with a cool handkerchief (I sometimes put a couple of ice cubes in it). Do make sure it's not tight and pulling your hair, however. Keep it loose. Your hair is really trying to hang on!
Susan
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Thanks for all the replies ladies. It is now hair washing day which I loathe it gives me anxiety can't wait till I'm pass this shedding stage ( it seems to be easing)
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Thanks Susan for the list it's great.
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Glad you found it helpful!
Susan
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I'm new to this site, but have been reading for a few days. I feel like I'm jinxing myself posting this, but I'm day 23 post 1st treatment with AC. I wanted to say that I've been wearing my hair in a loose braid day and night and while I definitely started to shed a lot 2 days ago - a lot, I am doing ok. There wasn't a ton of AC success stories on here and I am NOT a success story yet, but thought what the heck, I would add my story so far regardless. I'm using Chemo Cold Caps, my husband is helping me, we are changing the part every 3rd cap change. I'm taking a prenatal vitamin every night. Hopefully the next 10 days don't make me regret posting this. I'm doing AC 4x (every 2 weeks) and then 4 treatments of Taxol. It's tough, and I'm definitely not one of those who is going through AC with little side effects, but I AM half way done with the AC. I will try and keep every posted. I'm not brushing it daily, I'm not brushing it at all actually minus post bath brush 2x week. Keeping it in the braid keeps me from running my hands through it and pulling out stragglers. I've lot all hair on my bikini area, in my nose and most armpits. Legs and arms still have hair. My head is tingling so that makes me nervous. To wash my hair, I bathe, and literally just "mermaid" it and slowly moving my head side to side patting on shampoo and cond. I get out and brush through the ends then braid again. I'm praying this can keep up, I fully expect to lose a good 30-40%. Thanks to all of you who have posted before - your tips and tricks and hints were priceless!
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Hazlesmith, thanks so much for sharing your experience as well! We really hope it works for you, and you feel okay through the process! Keep us all posted.
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Sebm9 Thank you for the email! It is really helpful and I will be studying it carefully. You and everyone else on this forum are terrific!
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Hey ladies
Can any past cold cappers tell me how many inches can I cut off my hair at one time? I am 7 weeks PFC. My head is covered with hair but it has thinned a lot and now my long hair looks stringy will cutting it into a bob make it look better or will it just look like a thin bob? I forgot to add I am still shedding but it is slowing down. Should I wait until I have stopped shedding before I cut it or is it ok to cut now?
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Aussie - girl, I believe they recommend waiting 4-5 months PFC for a cut or at least until shedding stops; however, a trim is OK. I did a trim of 2 inches 4 weeks PFC and all was good. I think you could do a couple inches now and then do another couple a few weeks later. I think the thought behind only doing a couple of inches is to not cause stress to the hair follicles. They are used to your hair being a certain weight and any drastic change could cause stress and have the potential for additional hair loss.
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Just wanted to check in and give some hope out there to new cappers....here I am (yesterday) exactly 3 months after my last chemo. I washed my hair, used a blow dryer on warm with my round brush & finished with an iron. I haven't done that since January. I counted 3 hairs that shed. My eyelashes and brows have all come back & filled in. I'm so grateful to PCC! I start radiation soon & am so happy that BMX aside, I look like my old self!0 -
Aussie girl - today I am exactly 4 months PFC and still shedding, so I'm not even considering going to my hairdresser. My hair sure could use a trim, but I know that when the stylist starts combing my hair while wet, a bunch will come out. I'll wait a little longer for the trim.
Angiel, you look wonderful! I remember you telling me that you didn't notice any hair loss from Tamoxifen. I mentioned Tamoxifen because I know that hair loss is one of possible side effects listed. 4 months PFC I'm looking at other reasons of shedding, not just chemo. My GI doctor wants me to have some thyroid blood work done too, so maybe something will show up there.
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