Cold Caps Users Past and Present, to Save Hair
Comments
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Hi ladies; Today ia day 13 and i started seeing the shedding on my head:-( i was just combing my hair with my hands this morning and noticed strands coming out, not too bad. I am soo scared of washing my hair now:-( i guess i will pull up the courage and do it tonight maybe. Hope you all are doing fine. Thanks.
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Snoopy73-try not to freak out. We are bound to loose some hair and you could just be loosing what is "normal" if you haven't washed it at all. I'm having to wash every 4 day because my hair so long and curly. If I don't I'd never be able to get comb through it. I'm only combing right after I wash as well. no other time. Burts Bee has been super successful for a lot of people, I'm using Abba which is 100% natural and the very gentle version, I also am using a deep conditioning mask every other week. This is all to help prevent tangles and knots. I am having some scalp itching but I truly think its just cause I can't give my scalp a good scrub! One thing i do is wash the ends, and work my way up to the scalp where I very gently rub no deep cleaning there. Remember when you get out and comb we all generally loose hair so try not to freak out.
good luck
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Just had my first haircut since using the caps 18 months ago. I kept my hair all through treatment, and now finally feel secure enough to cut it short! The caps did cause very dry brittle hair...I wonder if I had used heavy duty conditioners in between chemos if it would have helped....BUT, it stayed on my head. I'm wearing it short and curly and love it feeling so healthy!
Hang in there ladies, the caps work!!!0 -
Thanks Dexxy:-) I think i am just being paranoid and freakin out... bought the burt's bees shampoo & conditioner, i also bought the moroccoan oil hair mask.
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Snoopy I am almost ten weeks PFC and am.still shedding but still have a full head of hair.. It is thinner than before but it still looks normal to everyone else. I have lots of new hair growing in too. I got nervous through this process and still do at times but I do still have hair!
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I'm at 13 weeks PFC and still shedding. Yikes! Hoping this shedding will stop soon. I lost almost no hair at all during chemo. Nothing alarming now. No one else can tell. Perhaps if you shed during chemo you'll have less shedding afterwards.
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Hi everyone~ just past 6 months for me....I too thought I would shed my hair away...but you won't ... I went through a VERY short time I hated my hair...couldn't cut or color it, couldn't use product to help it, bad dry scalp....but amazes me now that basically my hair is same as before chemo. I still think about where my sister was at 6 months PFC (she went through same chemo as me a year earlier) she was JUST going topless...and her hair was super cute but she didn't like it....I feel really lucky... I've been able to enjoy the summer, go to the beach, etc....don't know what I'd have done in a wig...
Scheduled FINALLY my exchange surgery for August 9th...a full year of diagnosis, surgery, chemo, etc....hopefully the next few years will be smoother!
Keep the faith...all of you worrying about shedding.. I SOOOO remember how you feel....just treat your hair gently, but do wash it.... Think about y'all all the time!0 -
Snoopy73: Don't worry, the shedding is normal, and on top of it you are more cognizant of the shedding you'd normally do every day. (I am normally a heavy shedder, so have always been aware of it.) For all ladies: it is important to wash your hair and keep your scalp and hair in good, healthy condition while you do all of this, so don't hold off. Just be super-gentle in terms of agitation, whether washing, combing, sleeping, etc. Your hair really is trying to hang on. It WANTS to hang on, help it! But don't be afraid to wash. Yes, you'll shed more during your wash -- but it's seven times as much as you'd normally shed if you washed every day. Don't let it freak you out.
mdg, howard: you're getting towards the end. Every woman is different, but as the shed continues, you will suddenly notice that it kind of stops over the course of a couple of days. This is the point where it's safe to resume warm water and daily washes. When it stops, you're done with that part of the hair care protocol! I know, the PFC shedding lasts much longer than one expects (or, at least, longer than I expected). I mentally anticipated it would be tied to my chemo's 3-week schedule. I wasn't prepared for the long PFC shed of several months. Yes, you thin hair during the PCC process, but only you notice -- others don't see it.
You'll really notice it when it starts growing back! My mom is visiting this week -- she hasn't seen me since my first chemo -- and was remarking on how uber-curly my hair is at this point. My Medusa hair :-) I'm growing quite fond of it. I know it's temporary, but I'm in a good place right now and enjoying every day, no matter what it brings.
lmflynn: great to hear how well you are doing! And good luck with the upcoming exchange surgery!!
Susan
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Mdg & Susan - Thank you. I am really noticing the shedding today. I normally shed when combing or washing but today am noticing it more. I also notice that I am starting to loose the hair down south:-) aaaahhhh I honestly cannot wait till this is all done. I am trying my best to stay strong and continue my normal life, its really hard sometimes but with Faith this too shall pass. I am glad that i have the PCC to help keep my hair. I went to the "Look Good, Fell Better" program today, and all women had wigs!! they first showed us how to apply make-up then came the hair part (how to put on a wig, style it, etc, how to out on the scarves & hats) and i told them that i am using the Penguin Cold Caps to keep my hair and one of the nurses (i think) who was part of the American Cancer Society, shook her head and crossed her fingers, she had this look on her face that mmmmhhh dont think it'll work. And i told her that I know ladies that used them in the past and present and it works, and she said well if your doctor is okay with it!! and i said yes she is!! aaahhh when will people (esp in the medical field) learn to just keep their mouths shut if they dont have encouraging or positive words to say!!
My next chemo is next week and my sister is coming from Toronto, excited to see her. She cant wait to see the PCC haahahaa she's curious to see how i put them on:-)
Gnite ladies and Thank you.
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I am day 19 and shedding quite a bit. Probably due to AC (x2 so far) more than anything, might be from some irritation or frostbite at the first treatment. Today 5-6 hairs at a time are falling out frequently and there are little piles on the floor. Despite this and even though my hair is thin to begin with, I can still pass at this stage. It looks thin at the top and some might think I damage my hair processing it or something because it is dry and fly away but noone would know I got chemo.
What I love is that I can still go to a couple of meetings at work and NO ONE KNOWS. This is important to me!
I had been taking silica prior to chemo b/c Frank recommends it, but my MO says no supplements during chemo. I am thinking of restarting the silica because from what I have read it is not an antioxidant and shouldn't interfere with chemo...
Anyone else try silica?
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Lmflynn: thanks for the words of encouragement, I'm looking forward to 6 months PFC, that's for sure! Right now feel a bit down due to all the shedding, it's hard to see day in and day out and hate hair wash day. But good to hear from you and from Susan. We can all get through this stage with hair. You guys are proof.
Snoopy: I had an experience at look good feel good as well. The session was about 12 days after my first chemo. I wanted to make sure my hair was washed and clean so I didn't have anyone ask me why it was oily, you know the washing protocol
. I didn't want to share with women who had lost their hair that I was using cold caps. It would make me feel guilty that I was saving my hair if they hadn't heard about the caps or had opportunity to use them. The time came to demonstrate how to tie scarves etc and they wanted to use me as the model. I did not want anyone touching my hair for fear it was too fragile to handle. They thought I was weird that I wouldn't let anyone touch my hair or head. I came up with some lame excuse and couldn't say why, my follicles were too delicate.
Like you my sister coming next week from calgary, Canada for my last chemo. Yeah! Looking forward to seeing her and getting the last tx over with.
Brca1babe: I too have thin hair and mine has been shedding at 5-6 at a time and frequently. This has been happening consistently after my 3rd tx 2 weeks ago and my hair seems to be all over the place. I do expect a big shed this week as well. It is hard to see, but I do know if I were able to wash, blow and style my hair the way I normally would, it wouldnt look that bad. I still have hair and I do not look like a chemo patient. And like everyone else who has gone through treatment, my hair is growing and when I look very close I can see new growth at the scalp.
Frank suggested silica to me as well and I have been taking it in between chemo treatments. My onc wants me to stop supplements 48 hours before and 48 hours after chemo infusion (which I would consider during chemo, after that time frame your body is in recovery mode as the drugs have left your body and now it's rebuilding), but then after that I can resume supplements, but not antioxidants. Once the 48 hour window has passed I resume taking silica, biotin, vitamin b6, l glutamine, fish oil, mag citrate, multi etc. Check with your onc first.
Sebm9: great to hear you are in a good place! Gives us hope that we can feel that way a year out. Right in the middle of chemo, feels like we're in the trenches waiting to crawl out. At times it is hard to visualize a year out, so it's great to hear you are thriving. Thanks for sharing.0 -
DebRox: It's a gift to be able to give back to women just receiving a diagnosis of BC, and beginning chemo. Even though I'm well over a year PFC, I remember exactly how I felt as I was starting. I couldn't have done it without the support of this group!
Snoopy: I had a Look Good incident also. My class was taught by the local/regional wig lady; I'd already been to visit her, and she was the one who told the class about my PCC use (with my permission). Everybody was so supportive, but one woman -- who had already lost her hair -- cried that she hadn't found out in time.
You all are doing great, and your hair is just one of the most visible signs of your inner strength in this journey.
Susan
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Hi ladies, I was just dx with ovarian & uterine cancer, had "the plumbing" out, now about to start 6 rounds of Taxol & Carboplatin and very interested in the cold caps. No info on OvCa boards but this forum is a gold mine of info! Someone back in the thread had a list of do's/don't for the caps? Would love to get that. Also would anyone in CT/NY area be willing to chat by phone re cap experience/logistics of using? The picnic cooler shuffle sounds sub optimal! FYI I just spoke to Weill Cornell in NYC re their cap trial - they said 5 ladies have tried it so far, too early to release data but anecdotally "the ladies are pleased with their results."
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Izzy66: Pm me your email address and I'll send my writeup on my PCC experience, with tons of info on how to do the dry ice method, the hair care protocol, and other info for getting through chemo. It is doable!
Susan
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Has anyone tried henna for colouring? might it be safer and usable earlier than the other methods? My greys are making my thin hair look worse than it is!
We're all doing great. It's wonderful to hear everyone vent - it's so necessary. I find the steroids have made me very emotional. I can feel the worry brewing and have to remind myself it's the drugs, not me, or my situation. I come on here and catch up on the girls and i feel better. Thanks to all of you!
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I think I read somewhere in the thread that some people did not like the henna. Try searching "henna" in the search box and maybe you can find it easier. I am going to do my second color in 2 weeks with a no peroxide no ammonia color. I am still shedding though but the roots are just needing covering at this point. My first color helped tone it down but I did not leave it on long enough to really cover as well as I wanted.
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Thanks Susan, I sent you a PM with my e-mail (I think! New to the technology). Thanks!
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HI Izzy66 I sent you a PM
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Maria - remind me when you coloured? how long did you wait?
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Izzy66
Happy to help you.. I had same disease and tx as you. PM me or check yours for my personal email; will send you info about vanquishing all side effects, and also useful info about dealing with cold caps and hair care during.
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LivCar: The steroids make me an emo basketcase! I have to have my hb continually remind me of that while I am on them. I hate the way they make me feel! One more round to go - I can hardly wait to get that over with and on to recovery!
I attended a Young Womens Support Group last week which I found therapeutic to speak with women at various stages of treatment. Since there were so many new women in attendance we had to introduce ourselves and state where we were in treatment etc. I was very self concious and guilty about the fact I have hair, when there were a few women in attendance with no hair. What was amazing was that one of the women came up to me afterwards and complemented me on my hair and she wishes she had known about the cold caps before she started chemo. I was able to speak with 2 newly dxd women about the caps and they are very interested in preserving their hair. Word will get out there, slowly but surely!
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Hi ladies. You all inspire me with your courage determination and grit. Thank you for sharing. I think of you all often. I am approx 20 weeks PFC. I 'think' my shedding has slowed (stopped). 18 weeks seemed to be the magic week. I am cautiously optimistic. I have been researching haircare. As in where do I go from here? I recently read the book 'Curly Girl' by Massey. It is for anyone who has full out curls or mild barely there waves. Generally speaking the protocol is shampooing approx once a week. No brushes. No sulfates in hair products. Cool water rinses for hair. (sound a little like Franks protocol?). it has a small section on chemo curls. I like that there are a lot of women following this protocol by choice and loving their hair. I already added the conditioner suggestions (i did not use conditioner on roots) and am using the lavender spritz. My hair perked right up!
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Thank you Sebm9, nmoss1000 and mtri111, you are all so terrific to offer your help. It makes me feel so much better.
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Hi Izzy66,
I finished chemo at Weill Cornell in New York about 3 mos. ago -April 21st was last chemo. I used the caps and my hair was saved, and it even "grew" during chemo. It works, it is doable, especially at N.Y. Presbyterian Cornell Weill, where they have a feezer. You can Private email me and I will give you my #, and we can talk.
Keep Positive!!
Nancy
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Hi Sashette:
What is the lavender spritz? Who makes it? Where do I get it? It sounds yummy. My hair is curly and wavy. I got a very short haircut, so I got rid of much of the curls. They are still on top. Everyone likes my hjair--even the color- grey, brown, darker brown, mixed. They think it looks very sophisticated. To me it looks grey!! A friend of my husband told him I looked like a "fox", like foxy lady, not the animal. Now my husband is worried. Ha! Ha!
Keep Positive!!
Nancy
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Hi Keep Positive. The product line is called DevaCurl. You can look it up on Amazon and read the reviews to see if it sounds like it would work for you. 'DevaCurl de-mister right lavender curl revitalizer' is the name of the lavender spritzer. There is a recipe to make your own in the book, pretty simple. I also use the Deva Curl One Condition and like it, it turned my dry brittle hair from the caps and chemo into healthy looking and feeling hair. I love that you are being called a 'fox'...you must look fabulous!
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Hello Penguinista's!
I wanted to let you know that there is a new forum formed by a recently formed group called Penguin Cold Therapy User Support Association to offer support and assistance to past and present user's of the penguin cold caps. It is http://penguin-cold-caps.proboards.com
It is another place to get information and advice directly from Medical Specialties of California and the past and present user's. And find out the latest news! Hope you can check it out!
All The Best, Geralyn (gmp300)
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Livcar: I am 10 weeks PFC and I colored about 2 1/2 weeks ago. Shedding still going on bad.....will it ever end???? I guess I am one of the lucky one's that has it keep shedding for a long time. I have lost more hair after chemo in the last 7 weeks than through all of chemo. I am bummed.
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MDG your not alone, same thing happened to me. It has slowed but still going on..
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MDG: Me, too. My last chemo was April 15. No shedding beyond what is normal until chemo ended. I'm wondering if the anesthesia from the exchange surgery could play a part, too. Three times with anesthesia (sentinel node biopsy, Mx, exchange) in 6 months could also cause some hair loss. We'll be through this phase soon! I'm taking Biotin and Silica hoping that will help.
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