Cold Caps Users Past and Present, to Save Hair
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Just curious if the cold caps are pai
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luvmyys- I start Wednesday with the penguin cold caps I saw you pulled your hair back so no part line is that correct?
I have very long blond hair and I had read to switch your part every time you switch the caps which seems like it would tangle my hair as it easily tangles. Just sounds like your method would work to not have a part showing.
Any other tips would be appreciated feeling overwhelmed a bit that I'll not get every part touching my hair.
Has anyone washed their hair with braids in so it won't tangle?
I have the ACT so we shall see! I have a group of friends that will be my cold cap buddies. Gonna be a long day on Wednesdays they want me To cap for 5 hours after treatment which seems so long but I'll do it!
Also does anyone have a recommendation on supplements I've seen biotin and silica is there any you guys used from Amazon
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MJPow, how long is your 'very long' hair? The first thing that comes to mind is you might want to have a trim so it does not go past your bra at the back.
In my opinion, long hair helped me to conceal the fact i was losing hair up top (because there was more to look at). But you really are not going to want to have more length than a few inches past your shoulder.
My sister sent me Acure hydrating shampoo and conditioner from San Diego, and it was very gentle and minimised tangles. I mentioned it here a few months ago and to my delight, a half a dozen other gals tried it and found it helpful for themselves as well. It is lovely stuff. At one point i ran out and used my pre-chemo fav Aveda shampoo and had waaaay more shedding. Being gentle with your hair is no joke.
Expect a big shed around day 19. If you are lucky, it will taper off from there and subsequent rounds will be less dramatic. But shedding does seem to continue for a few months post final chemo for most people. 4 months out, and i am still shedding more than i did pre-chemo.
Good luck!
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thanks tune!! I did actually buy the Acure shampoo and conditioner from reading this site!
My hair is probably to my bra line I had it cut a few weeks ago. I have seen people recommend not cutting it so close to chemo or coloring it so hopefully that was far enough back!
My friends are coming tonight to practice the capping before our big debut on Wednesday
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Lovesgreenthings: So far, so good with the Eyebrow Solutions. Mine had thinned out a bit after my first two rounds. I haven't noticed any further thinning since I started using it. Even if I lose them, I hope this brings them back even thicker! Thanks again for the suggestion.
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MJPow, Penguin recommends nothing that pulls on the hair follicle and I think braiding your hair would do that. I barely comb it now that I have started this process and only with a wide tooth comb and very, very gently. I bought some silky scrunchies at the dollar store and I very gently lift it into a loose pony tail. My hair is not pulled tight at all with this pony tail and the instructions I received from PCC was that this was ok to do, it helps when at the gym, etc.
For actual cold capping, changing your part is a great idea but the trainers I had used the method I described above so I had no part as my hair was smoothed back and never deviated from that due to the stocking holding it there. It helps with frostbite protection too they said. It worked for the trainer, she was AC+T and lost about 50% of her hair which is great for that protocol. I was happy not to have to change my part every time the cap changed. I only have one helper and we are busy!! The chin strap with PCC can be super tight so I do loosen it once everything is in place and the stocking I wear cover my chin so it did not bother me. We used panti liners on my forehead and ears. My forehead was chapped last time, so I figured it scooted down a bit. I will watch that next time. We cut out enough ahead of time to use for all of my infusions and keep them in a little baggie with us on the day of chemo. Good to have them on hand if one becomes dislodged and unusable.
Also, just bought a kitchen timer. We goofed and did not see the time correctly on one of the sessions by using my IPhone. I will set a LOUD timer plus the phone now. Keep both in my lap. I plan to use the timer as the 5 minute GET READY to change cap time keeper. With just one capper this will be helpful. If you have a group, make someone the designated timer and don't let them get distracted. m
Comb your hair before washing so there are no tangles ahead of time. I don't tip my head upside down either as that would cause tangles. I wash in the shower. I turn the water to tepid and a very, light spray and wet it that way. Just a bit of shampoo in my hands, very gently put it on my scalp (not the rest of the hair as it will drain down that way) and let it sit for a few minutes. Then tip my head back as I normally would to rinse. I use just a touch of conditioner on the length of the hair and rinse the same way. It is a colder shower that way, but the sink washing seems like it would pull more than what I am doing. I use a towel to dry my ends and then comb it out slowly. Towel gently some more then shake my head a bit and air dry. No volume this way which stinks but it is what it is. My hair is fine and dries fast. Not sure my way is right way but it seemed to be the best method to put the least amount of stress on the hair follicles.
I take Biotin daily still need to get the silica from Whole Foods. I buy my ice the afternoon before my 830 am infusion so I am all set in the morning to start getting the caps in the ice and ready to go. Lot's of kitchen towels packed in there too, you will need some to wipe the caps down before they go on your head.
Hope this helps relieve some of your anxiety about this. I was pretty hyped up before the first one too. Catgirl2 took me off the ledge! PM any of us if you have more questions! Mistakes will happen and you just have to go with the flow. Make notes on what to do next time. Good luck and keep us posted on your success!!
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lovesgreenthings- thank you so much for all that info!
I just want to make sure I understand the no part because I've read so many posts. So you comb it straight back with no part showing and use a scrunchie at the bottom loosely. That makessense to me to not have a part.
I am getting nervous I had my husband and cousin practice on me last night while watching the main video it was quite a comedy show as we pulled and practiced the straps. The chin strap was awful but we are going to stick something soft under it tonight when we practice again. Is the tighter the better?
Did you guys ice your hands and feet during the AC or only the T?
I know after Wednesday I'll feel less anxiety the unknown is always the hardest part. I'm such a planner and like to have everything under control and i just have no idea how I'll do with any of this.
Just gotta stay tough 💪💪💪
Thanks so much everyone
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Hi Everyone,
I just joined the website and community-- here's my first post. I've had 3 cold cap sesssions with my chemo -- one more to go. I also found bringing a panytliner or cotton pad to place under the chin helps. I do have someone to help with me the caps and I know you need the strap tight. But you also have to be able to swallow so after the cap is on, we loose strap a little. I bring water and herbal tea to my sessions. I have the caps for 4 hours after my chemo is finished. I bring things to read but find it difficult because I can't wear my reading glasss with the cap on. Also bring a blanket and wear comfortable clothes.
I'm glad to have found this helpful community.
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Hi MichCali - Welcome to Breastcancer.org! We're glad that you've found us too, although we hate the reason you are here!
Please let us know if you need something from us, Mods, and we'll be happy to help you.
Best wishes,
The Mods
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Welcome MJPow & MichCali!
Lovesgreenthings really gave a lot of useful info. It's sounds overwhelming but after the first one, you'll be a pro. I left my part in the middle at all time and my hair hanging down. I felt like it wouldn't be thicker in 1 spot if I did that, that it'd be more uniform. I don't have any thinning on my top layer. My thinning was under it on both sides. Thank goodness I have the top to cover it! Just my 2 cents worth.
All, How many other cappers changed their parts?
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Hello, thanks for the warm welcome! I also never changed my part ( have had 3 treatments). I've had some thinning on the sides by my ears but I have shoulder length hair so it's not really noticeable. I appreciate all the helpful information from everyone!
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MJPow, my practice session was hilarious too, so glad you could find humor in it. My info confused you - so here is what I do.
At infusion, I use my hands to make my part disappear, lightly pull my hair straight back. Then I put on the hoodie thing, called a Spray Sock. It is lightweight and keeps my hair pulled back (no part) and also covers my chin (aha!! No strap hurting my skin.) The Cold Cappers who mentored us thought this one up. We keep the caps 1 degree colder for this method.
The scrunchie I use is silky and lightly holds my hair back for yoga class, etc. I do NOT use it for cold capping. Your hair should just be as you normally would wear it. You can buy the Spray Socks online or I went to Home Depot and got one. Otherwise, as others have mentioned, they simply change their part line with each cap change. Be gentle though, just use your fingers lightly to move it around.
You are getting very well prepared so you will great on Wednesday! I am excited for you! Please let all of us know how it goes!!
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Pamela23--I have been changing my part (forgot once) each session. I have had 6 weeklies out of twelve. I change it back when I'm finished. I thought the purpose was so that the same bare area of the scalp wasn't exposed time after time directly to the cold cap? In any event, I've noticed no difference in any areas of my scalp or hair with changing the part line.
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Pamela23---My dignicap nurse had me comb my hair straight back. No part each time.
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MJPow, it sounds like the part changing has been a non-issue for the others, so don't stress too much about it I guess! I plan to ice during Taxol but have not done that yet with AC. I drink ice water and chew on ice for mouth sore prevention. My RN waits until I am all set up before she administers the A of the AC cocktail and maybe it helps or maybe not. I am doing it anyway. Taxol seems to be the one with the neuropathy issues so I plan to ice hands and feet then. I also heard drinking tonic water daily helps prevent it and someone said she iced AFTER her session and that helped. Another said Epsom salt soaks for her hands and feet helped.
With AC, hand foot syndrome can be an issue. If that starts, I will ice with pea bags at home and do the tonic water and soaking. For now, just capping is a lot to do since I have just one person with me and we work as a team to time everything, etc. I do hold my cold water bottle and ice all through the session. An electric blanket, heating pad (on lap) and warm, layered clothes help keep from getting too cold. I don't get a sedative in my IV either, so am fully conscious of everything. I took Ibuprophen in advance to make the port access less painful and that might have helped the freezing head most people get initially.
You sound very prepared! That should make your sessions go much smoother. I know it helped me to have everything set up ahead of time.
Good luck!!
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lovegreenthings-awesome thanks for all that info! Did you still use the padding moleskin on your head and ears with the spray sock?
It seems like that spray sock would be great to keep your hair from tangling or getting stuck in the Velcro!
For mine they said to keep the temp between -30 and -32 so I'll adjust it a degree
I did go on amazon and buy some gloves and socks that freeze for the T part they arrived yesterday!
You are awesome keep fighting!! 💪💪💪
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I'm way behind on reading all forums. I was sick in bed on my back for 4 weeks with various viruses, but I'm OK now. One chemo was only delayed one week, so that is good.
I just finished chemo yesterday. (Mar 13) I had 4 double dose AC followed by 4 double dose Taxol (2nd Taxol delayed 1 week)
I've been using Penguin Cold Caps (I found their customer service atrocious - at the location I had to use.) I'm sending back their stuff tomorrow. They even wanted their pen back (really - I paid $580 a month and they want their pen back?).
So I'm going to post a series of pictures of my hair. I started with very thick hair, so thick that most barrettes did not hold my whole ponytail. After 106 days I have no problem finding small barrettes to hold my ponytail.
November 18, pic from studio 10 days before 1st chemo (1st chemo Nov 28)
Jan 20
Feb 26
March 14 (1 day after last chemo) I got a hair cut between last pic and this pic.
This is day 106 after chemo started.
Mar 14 pic of top of hair - have not washed since chemo, you can see stuff in hair. I get to wash on Thursday.
I lost my eyelashes a few days ago. I expect to lose my eyebrows in 2 weeks.
I am losing hair everyday. I would estimate I have 40% of my hair. I started out with really thick hair. I think someone who has thin hair would never make it through chemo with enough hair. I'm not even sure if I will.
I think I will lose hair for many weeks (or months to come). I'm afraid to ask. My hair started coming out worse with Taxol, but MO thinks it has more to do with how long I had been in chemo, not so much that Taxol was worse on hair then AC.
Here is a typical hair loss pic from Feb 19. I don't always get mats of hair, but I get them enough. I think mostly from the back of my head (while I sleep). I would say I am having a bit less hair loss everyday now, maybe because I am being more careful in my daily combing. But I shed all day and my fleece jacket and the inside of my winter jacket are full of hair. There is my hair everywhere.
I will not know if I'm a success story for many months. I don't have any bald spots yet, and people say I look normal when they see me. And since I wear glasses they can't see I have no eyelashes.
Just thought I would give a progression, now I will go back and read old posts. I've only gotten up to about Feb 8 or so, so lots to read.
I have been lucky with side effects of chemo, but unlucky with getting pretty bad viruses from a compromised immune system.
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MJPow,We cut pantiliners to fit my ears and forehead. Lettered them L and R. Mad up a bunch ahead of time. They stick the whole time and are easy to remove.
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Hangin - congratulations on making it through chemo. You have a ton of hair. I would have to say, you've one of the best success stories with AC+T that I have seen. Awesome! You look great and let us know your final shedding outcome. It is extremely helpful for those coming through this process to see the final outcome. I scoured this and other threads to see how my shedding compared with others. Thank you for sharing!
I am 6 weeks PFC and I have graduated to washing twice a week. I had several washes where had no shedding, then mininimal with styling. Then the last two washes I had maybe 5 hairs shed during wash and maybe 20 with styling.. I don't know what is normal. My hair was so blonde before chemo and my bathroom floor is white so I couldn't see them if I shed. Now with brown hair I see every hair. I found a new growth gray hair growing on my head. It took a lot of muscle and force to pull it out.. the follicle seemed so strong. Anyway holding out on cutting again until shedding slows a little more and new growth gets a little longer..
Good luck to all!
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Hanging in--Looking at your last pic, I wouldn't know you were a cancer patient but we all know our own hair and going from the pic back to the first one, I understand the thickness issue but I'm in other groups that post pictures of their beautiful bald heads and I'm reminded of the success these caps provided to me. I'm grateful everyday that I had the choice and the resources to cold cap!! Once it starts to fill in, you'll feel better. I think my bald spots are filling in but unfortunately it's fill in gray. I read somewhere that it goes in gray first and then changes color. Fingers crossed! I'm 8 weeks PFC on TC and am still getting a couple combfuls of hair with each washing. I switched from a powder to a pray because my grays are too much now and it REALLY covers the patches under my sides. My lashes have been gone about a month. I read lashes have a life cycle about 3 months. I'm hoping they don't all fall out again at the same time since they'll be on the same cycle. I also read it takes between 2-4 months to grow back. Unfortunately I lost most of them about 4 weeks ago. So still a way to go! My brows are still losing too.
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Hangingin--I hear you say you aren't sure you are a success story or not, but you look GREAT! I hope that your shedding slows down soon. Thanks for posting the photos. Please let us know how you are doing
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Hangingin: I think your hair looks good! I also had thick hair and it's terribly thin to me now. Everyone else thinks it just looks like I'm styling it differently, but I know! I have one more round of TC this coming Wednesday. I can't wait to mail back my Penguin Cold Caps! I have no idea what happened to the pen...I'm sure they will charge me $50 for it. I haven't heard from my rep since I ordered the caps, so I understand the lack of customer service.
Pamela23: I've already had to switch to spray when I want to leave the house. I know it's probably risky, but I have so much grey and some thin spots. It's the only way I dare go out in public! I just use the powder around my hairline, but I have to spray the part and other spots because I have 2 inches of grey. I'm afraid that I'm going to have to cheat and color before I should. Have you found a way to wear make up to disguise the lash loss? I have some glasses that I could wear, but not sure what else to do. I haven't lost them yet, but figure I will in a month or so. I'm going to Cabo at the end of June and would love to look somewhat presentable! I'm so ready to be done with all of this. Every time I feel down about my thin hair, I remind myself that I could be starting from completely bald.
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Thank you for your kind comments Catgirl2, Fastgirl, Pamela23, and Luvmyys. I'm hoping to hang on to my hair and just look normal. I checked the literature; roots are not completely recovered for 6 more months. I'm not sure what that means in the way of babying my hair.
To get that hair through 106 days of chemo, I endured 4 (AC chemo) x 9 hours ( 36 hours) + 4 (Taxol) x 10 hours (40 hours) plus 2 more hours, since I started cold capping for 2 hours before my doctor said I was too sick to get chemo that day and delayed a week. So 78 hours. That is brutal! You cold cappers know what I mean.
So if you are new to the forum, it was brutal cold (-29 to - 31 degrees Celsius) , and 5 lbs on my head, I had to lay down to endure. I did not know all of this before I signed up. I love having my hair, but I didn't know what to expect, which I'm not blaming anyone but myself. I didn't have time to do any research, since I had to decide in about 2 days to ship in time for my first chemo.
For those of you still enduring my hugs go to you and my heart goes out to you.
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Catgirl--I line my lash line with a dark brown liner and my friends say they don't note when I tell them I have no lashes. It's a heavier make up look than I would normally wear during the day but I smudge it so it looks very thin like a lash line on the bottom more than an 'eyeliner line'.
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Hi Cold Cappers,
I thought I would check in and send some good vibes. I know this thread was a lifeline and everyone's tips helped. I am 2 1/2 post chemo. What a journey! I have been using Clariol Semi Permanent dye ($6 at Sally Beauty) and my hairs is in good shape...I would say I lost 40% of my hair...and is still shedding a bit. My hairdresser assures me it is growing back and healthy all things considered. I am using a blow dryer and flat iron...but still no permanent dye...
Here is a picture from the weekend...just want to encourage anyone to try cold capping or stay with it. Cancer sucks but keeping my hair...allowed me to keep some privacy and dignity.
Happy St. Patrick's Day!
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hi Pamela,
Hope you are doing well!!!
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I just placed my order for cold caps for the second time. I successfully kept more than half of my hair in 2014 with Taxol and I'm starting Taxol again on Wednesday. I had super thick hair to begin with, so now I have just a normal amount. Keeping my hair made me feel more normal, even living with Stage IV. I remember thinking about my hair all of the time, and I'm not looking forward to that again. <sigh> I am happy to have the option, though.
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Progress! First pic Feb 18, 2nd pic March 16.
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Yeah, girl! You'll have a mullet soon. (Like me!)
Congrats
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Harrysmom, so sorry you are dealing with more chemo. Hope the taxol does great things to your cancer cells!
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