Cold Caps Users Past and Present, to Save Hair
Comments
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Today I finished my last treatment of taxotere/cytoxan using the penguin cold caps.!! ' And my oncologist is absolutely shocked about my good results !!
My husband and a friend helped me each time. I thought my husband would not be able to handle it, but he ended up doing a great job. When I got home I wore the caps another four hours, and he was able to handle putting them on by himself, without my friend. I think they step up when they have to. I could not have done this correctly by myself. Especially tucking in the back flaps to ensure you head is tightly covered. I only felt real cold when I iced/water my feet and hands during taxotere. The caps only felt refreshing to me because the steroids made me hot.
Penguin told me it was OK to use Pureology moisture shampoo and matching moisture conditioner, purple bottle. It can be found at Ulta or Beauty Brand stores. Great shampoo and I have used it for years. I especially like the conditioner, it truly changes the texture of your hair to a smooth. I have long hair to the middle of my back, and I would stand in the shower with room temperature water, spraying very lightly on my hair. I would put the conditioner on the bottom part of my hair and I did not have one problem with tangles. I think if you put your head upside down, you will get more tangles. I also use Accure clarify once a week
to cleanse but I always condition with pureology to keep tangles away.I followed the rules very closely and used the headbands provided with my PCC order. I have not noticed any hairline loss but I gave shedding. My infusion center has a freezer donated by Rupunzel. I still got dry ice for bringing my caps home to wear 4 to 5 hours after. I went to a dry ice dealer, not a supermarket, and they gave us 6 slabs for free. I always brought them cookies or cinnamon rolls.
I cannot wait to be able to curl and color my roots someday but I'm so happy I have hair!!
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willow22
I use a cpap to but found a strap that loops over my ears during this journey. It works well. See if your brand of machine offers that option, instead of it going around the back of your head. I also think a silk pillow case really helps keep your hair untangled. I bought one for under $20 on Amazon. I will continue to use the silk pillowcase because your hair literally looks like it did when you went to bed. It's amazing.
Good luck and it's worth it
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Pambc010417 - WOOHOO - Congratulations on finishing chemo!
is the photo of you AFTER 4 rounds of TC chemo???? You look amazing - healthy, strong and gorgeous! i know not everyone's results are the same, but I have read enough good comments here to give cold capping a try
Thanks also for the tips for the cpap and pillow case. by any chance do you remember which brand of cpap mask had the ear loops? I have an appt with the RT at my sleep office next week to try on a nasal cushion to hopefully get rid of the sore area on the bridge of my nose, and could check out the style then. Last time I was in, they said the tubing is universal size, so I can use any brand mask with my Resmed machine (which was news to me). 0 -
All,
Are there any tips on how to treat your hair BEFORE you start treatment? I currently have highly processed blonde hair. It's healthy but I know I wont be able to continue bleaching it and I also dont want to have 3 inch roots. I am going to have my stylist take it back to it's normal color which is a dirty blonde. Any other tips? Maybe a deep conditioner?
Thanks!
R
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redeesides--How much time do you have before you start capping? Chemical treatments too close to the commencement of cold capping are discouraged by Penquin. (I think I colored and highlighted two weeks prior, but I didn't know at the time I was capping.) I think, if anything, I had some breakage, but no significant hair loss as a result. I know one woman definitely believed her color a week before she started capping contributed to more significant hair loss than was usual for the drug regimen she was on.
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Fastgirl - If we are only talking a couple of weeks that I should do it beforehand, I should have time. I haven't even met with my oncologist yet. I want to get ahead of it though. I will ask my oncologist too, but wouldn't it also be good to take certain vitamins, like ones that make your hair grow? (I am thinking how much prenatal vitamins made my hair grow). I obviously won't take anything without my oncologist's approval, but it seems like that might be an idea?
If you colored and highlighted two weeks prior, how did the capping go? And also, how long after capping can you not treat? So how were your roots? I would think that no one is going to think their hair looks amazing afterwards, but I'm just going for not looking crazy or sick. Haha.
Right now my hair is so blonde that my roots will look CRAZY if I have to wait more than two months to color again. Maybe if I do something closer to my natural dirty blonde color with some highlights I will be able to get away with not coloring for a while. I'm sure my hairstylist, who specializes in color will have an opinion too of the best way to go a while in between coloring.
R
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rdeesides... I dyed the entire underside of my hair pink and purple about three weeks before I started chemo. I had 4 rounds of TC used Dignicap and lost about 70% of my hair. Most if it all along the top where my natural, undyed hair was because of a poorly fitting cap. I have more pink and purple now than brown lol.
One thing I love though is I have my natural roots coming in so I can see that my hair has grown throughout chemo approx 1.5". It's encouraging to have roots not discouraging
I have to warn you, you will have months and months or bad hair days where having roots showing will be the least of your issues. It's a lot of hard work physically and mentally to cold cap. I've had terrible hair since March and nothing new is growing yet from the bald areas so I have months and months to go. Even though I have a huge bald spot and can't go out without a lot of toppik and a etc wide head band, it's still worth everything I went through.
Ask your Dr about biotin, that is what a lot of us take. Other than that just be prepared, get silk pillowcases, the shampoo and conditioner, some dry shampoo, large combs, headbands etc so you're not caught unaware when you shed and may have bald or very thin areas etc.
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Willow22
The picture is one week old, just 1 week before final treatment. I've had good luck with the PCC caps. I'll just keep following the rules and not color my hair. I do use Wow, Madison Reed hair temporary powder, and sometimes dark eyeshadow to powder on my part. It does not cover it completely but it makes it less noticeable. I also use Pureology Colour Fanactic a 100% vegan leave in condition on wet hair and on my dry hair to tame it down.
I also have a Resmed cpap machine. I have the Swift FX Bella nasal pillows system. I use the xsml nasal pillow but it comes with other sizes. It works well for me and keeps the bands off of my hair. Good luck
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pambc- thank you for the pic! It gives me hope. I just did the first tx!
Willow- the caps should not interfere w Cpap machine. Also, u will be changing caps every 20 min. So I don't think you will sleep. I was so tired, waiting for the time but we sat by the tv. I have no idea what was on. I was able to eat! Soft food because of the chin strap. Maybe you can google arctic caps. That's what I used. Rental $379 per month
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Hi Pambc010417 and Mari, thanks for the feedback on cpap masks and pricing for the artic capping system. The hair care instructions are pretty specific about protecting your hair from tugging, etc during and after chemo, so I was worried my strap system would damage my hair while I slept during those months. Thank you for taking the time to post the photo - I'm still very nervous about how the cold will feel on me (I don't tolerate it well), but I'm sure I can make do for 4 treatments
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Willow - at the hospital
I met someone on her 6th session. She told me to ask for lorazepam before the first cap. Once the first couple of caps are done it's really not a problem. I do think the lorazepam helped though.
Take a nice blanket! You will be on and off!
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Amapola--I didn't use Clairol semi perm until week 14 but that was because I was scared and also because I felt I was still shedding more than I was comfortable with. On the other hand, another girl who (IL311 I think) did it 3 weeks PFC and said she was fine. The trouble I have is that the light ash brown doesn't quite cover my grays and the medium ash brown looks way to dark on the hair that isn't gray. I've done it 3 times so far, like every 3 weeks.
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Willow22 - I also took one 0.5mg of Lorazepam (Ativan) the night before chemo because I get so jittery from the dexamethasone 4 mg. I can't sleep at all without it. In addition, I take one Lorazepam 0.5 the day of cold capping. I did not feel cold from the caps because the dexamethasone, which they give you in the premeds, made me hot. I did take an electric blanket to put around my shoulders and they usually offer warm blankets at the infusion center too. I was not cold until I put my feet and hands in a ice/water mix to prevent neuropathy. I put socks on my hands and feet and then I insert each one of them into a Ziploc bag, for sticking them into the ice water. I also suck on ice chips in my mouth to prevent sores.
I know every person is different regarding temperature of their body but the caps did not bother me at all. The first five minutes you may feel a little cold but then your scalp is numb and you're constantly changing out the caps.
Good luck and I wish there was one place on this site that we could list all of our tips for future Cold cap userswithout having to read each thread. Does anyone know how to accomplish that?
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Pambc--there is another forum in Managing the Side Effects--below is the link--the link doesn't look active, but maybe if you copied and pasted? Anyway, one of the women created this forum as FAQ for newbies who are cold capping. I think it has some good info, but I haven't looked at it. I read about it on this forum quite a while into my capping experience, and some of the content had already been posted here. But the gal who started it had the same idea, that is would be a good idea to have a place to share tips.
https://community.breastcancer.org/forum/6/topics/836476
Redeesides--my MO did not want me to take a lot of supplements during treatment. Especially anything with antioxidants and she didn't want me to take the viviscal as it has iron in it (if I am remembering correctly) and she said that wasn't good for me either (I am post menopausal). So what she was OK with during treatment was the silica that PCC recommends, a B complex, and an additional 50 mg of B6 for neuropathy, and a D3. For roots--I have white roots and colored dark brown hair. So root control was awful. I work in a professional environment with client contact, and my appearance at work was so hard during all this as I only told 3 people there. So I first used WOW powder at my part. That worked for the first 4 weeks. Then I used the Loreal touch up spray that Pamela23 used. That is what carried me through treatment and past. It is like a hair spray though, so your hair feels "stiff". Then at 7 weeks PFC, I tried a test area with Clairol Beautiful Collection advance gray solution semi-permanent color. This is a semi-perm that many women used on this forum a few years back, and I believe ILL33 used it too. My total white hair does not take color well anyway, so it does an OK job, but definitely ramps down the contrast.to cover. I have been using it each hair wash since to cover more and more of my roots, and can tell no ill effect.
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lorazepam/Ativan sounds like a good plan.... I'm sure I'll be a bundle of nerves the night before 1st chemo even before taking the dexamethasone, lol
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Hi Everyone, It seems that EVERY time I wash, I have so much shedding. HUGE. I feel like I am not washing correctly. I use a spray bottle with Acure shampoo and water and spray half of it all over my hair near the scalp. Then, with my hair upside down, I pour the rest of the mixture on my head with concentration on the front area, since that is the greasiest. I gently massage but don't really lather. Then, I rinse by pouring cold water on my scalp with a cup. I dab dry with a towel. I use Kenra spray on conditioner and try to comb out the tangles starting ends first. That's when the huge shedding begins. I comb out lots of hair! I stop mid way and never really comb near my scalp. I air dry and throughout the rest of the day, tons of hair just fall. I've limit myself to washing once a week including the 3 days after chemo. What am I doing wrong???
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radmonkey- I think you should avoid flipping your hair forward to wash if that is what you are doing? I always started with my hair brushed back from forehead then I only rinsed and washed from forehead back one direction keeping hair from getting too messed up. I avoided putting much (watered down) shampoo at the back of my head since I could not get it out.
I would take my piano bench into the bathroom and lay face up with head over the tub and have my hubby rinse and wash my hair with a shower wand all in one direction. Cool water, always Used very little watered down shampoo. dab dry and no combing until my hair was dry. I did find that my hair got less and less greasy the less I washed.
Hope this helps
Are you doing ACT or just TC. I hope just TC...If ACT it will be a challenge to say the least. Keep babying your hair and keep up the good capping work.. it'll be over soon and any lost hair will grow back fast. Im finally feeling okay about my hair 3.5 months past chemo. I lost more than most do. It's not my old beautiful hair but it's now finally looking like healthy shiny weird style hair.
Hugs e
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thank you, e! I will try that! I appreciate your response. Each wash is so depressing
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Hi MJPow, thank you for those tips. I am using penguin cold caps. I have 4 treatments of TC and I am taking lupron injections as well. The caps seem to have worked but this morning I woke up to go to the grocery store and lightly brushed my hair back and my hair on the left side round my edges began to come out. It's noticeable to me and I can tell it's thin. I had an unusual amount of hair in my brush, it really scared me. I did not panic but I have to be honest I did become nervous. So I began to remember my oncologist told me I would have thinning and my hair would shed. However, it seems as I touch the sides it will come out. I hope we put the cold caps on correctly. I have my second treatment on Friday July 7th and I am worried that more is going to come out. I've read on here that some lost hair and some still kept a head full. I am not a vain person by any means and yes I know it's just hair and it will grow back but keeping my allows me some sort of privacy in public while I get through this and it gives me a sense of control.
I carefully followed penguin cold cap instructions and I brought biosil which has silica in it and it helps with bones, nails and hair growth. I also used Carol's Daughter shampoo and conditioner because it's an all natural product with no sulfate and parabens. I have curly hair and it's extremely frizzy, so I have to keep conditioner in my hair to tame my frizz but the last time I washed it I did leave a little conditioner in it because it helped me get some of the tangles out. This time I will just be extremely careful when trying to style it and I plan on using this organic detangler which really makes my hair soft and smooth.
Did anyone else have shedding or thinning while using penguin cold caps?
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radmonkey- I do not put my hair upside down either while washing. The water can make it too heavy and pulls the hair follicles. My hair is down to my mid back so water makes it very heavy. I sort of hold it towards the end to keep the weight from pulling my hair follicles. I always run a soft stream of water from the shower slightly leaning my head back to let the water run down the hair. I use a squirt bottle of soap/water mixture and gently massage my scalp and back of my neck area. The thing that had helped me the most is wrapping my hair in a microfiber towel afterwards to absorb most of the water out of my hair. I leave it wrapped in a towel for about five minutes, and then myhair feels much lighter afterwards. I forget what chemo you are taking. That could make a difference too.
Grcmercy - I do not use a brush on my hair so I would try calling from the bottom up little by little.
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I'm on AC x 4 + T x 4 I had the option to do weekly taxol x 12 but I can't imagine capping 12 times vs 4. My last AC is this Wednesday. I can still go out without a hat or toppix, I just have really thin hair. My part is widening. I haven't used toppix yet because I'm afraid to wash it out which might cause more shedding. I will try to hold my hair to prevent the weight of the water pulling on the hair. And no more washing hair with face down. Thanks
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rdeesides - I texted my PCC assistant and ask if I could give you his phone number. Sorry, but he didn't respond. I will be 5 weeks PFC on Tuesday. I kept between 25 and 30% of my hair, which is much better than having no hair. I am already having some, very few and very short hair growth. My husband looked at my scalp and said that he observed black dots on my scalp. He will be checking in a week again to make sure it's hair growth. I have been taking Viviscal since 10 days PFC. I have noticed that just very few ladies that undergo TC chemotherapy keep a good amount of hair. Most of us shed quite a bit. I hope cold capping works really well for you.
To those of you with dandruff issues - As weather got hotter where I live (100+), my dandruff came back with a vengeance. I went to see a dermatologist and he prescribed Nizoral 2%, as well as Clobetasol Propionate Topical Solution, USP, 0.05%. He promised me that this would not increase my shedding. I have read that Nizoral Shampoo actually helps with hair growth, regardless of whether you have dandruff or not. I have used Nizoral Shampoo once and it did not increase the amount of hair shedding when I washed it. It did dry my hair quite a bit, so I will have to find an excellent conditioner and apply it before and after shampoo. He said that Hairmax brush might help with hair growth too. He advised me to use Rogaine for men, but I am afraid I may get facial hair, so I will use a similar product made for women.
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Tomorrow i will wash my hair the way you girls suggest. I am really scared of another big shedding after the first one that i lost half of my hair trying to detangled my hair. Did you use silica, during chemo as penguin suggested? And what about taking biotin ?
I heard also about Viviscal, those are after chemo or i can take them right away. ?
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Vivianlu8 - I hope everything goes well when you wash your hair tomorrow. I have noticed that when I comb my hair after I wash it, the hair that shed off when I washed it, clumps. When I comb it, I hold it with my hand about 3 inches from my scalp and comb out the clumps, which is hair that already shed off. Once I have removed the hair that fell off while washing it, it is easier to comb the top. I always start by combing the ends. I took silica while on chemo. I started Viviscal after chemo
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Thanks Cali, today i washed my hair with Accure shampoo and conditioner, little pressure of cold water, with the shampoo mixed with water in a bottle and it went fine. No tangles. I used coconut cream for the frizz and it looks not so bad. Only short. I had it long but it shrunk. Next Wednesday my 2 chemo. So those who had finished already could you please help us telling how often are the shedding? like everytime you wash it? Or everytime after the chemo?
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Vivianlu8 I will be 5 weeks PFC this week. I shed every day, every time I comb my hair. I had a "big shed" after every chemo, I had one about 10 days ago too and now I will hopefully just have the normal every day chemo shedding. I am hoping it stops soon because I don't have any new growth anywhere on my body yet. Hopefully soon.
Just continue to be gentle and hope for the best. No matter what happens it's still IMO better than having no hair at all. There's ways to disguise whatever you lose.
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hi Vivian lu, I'm a little over 4months PFC. I had 6rounds of TC and I had my big shed after my 2nd round. I had shedding after every wash. Not huge but enough. And thought the day I would have lots of hair on my blouse. I noticed the shedding slowed after my 5th round but still had some. I can say that my shedding stopped about 5 weeks pfc to where it was Just normal shed. But that's when I lost all my lashes. I always washed very my hair with a cup. Never under the shower head. About a week ago I just started to wash under shower head and it didn't cause more shed. Good luck
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MJPow- what hair nets do you buy? Can you please send me the link? Thanks
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I have hope now. I am 5 weeks PFC today. I just washed my hair with Nizoral 2% ketoconazole and I shed quite a bit less than last time and any other time since after my first infusion. My dandruff is almost gone. I can already see hair starting to grow!!!0 -
cali58-nice photo! Congrats on seeing new growth! That is a great feeling right! It's going to fill in really fast! I think your hair looks really healthy right now! For me the moment I saw new growth the bald areas filled over night! It's such a good sight.
Looks like you have good thickness down below there. Keep up the photo posts. And if you can let us know what you are doing with the new growth. I'm just wearing scarves and ball caps I've no idea where I'm headed with my new short chemo curls under my old growth.
I also think your two tone color looks pretty! healthy looking!
Hugs e
PS
My last chemo was march 23. That little blonde bun below is all that's left of my old thick mane.i lost almost 80 percent and almost gave up! Now it's so puny but I still like having it to stream out my ball caps and scarves! Keeps a bit of femininity on me.
I included my hippy scarf photo. I love these things! you can get them at shops that sell tie dye and India budda stuff. It's not a bandanna. it's really soft and has elastic at the bottom. It's very light weight doesn't pull on hair. I think it'd be safe to wear before your hair stops falling out. It is the best thing I found for no pulling! It does slide and fall off really easy since I've got so little hair to hold it down at the back...You can pin it.
I know it's really hippy and not for everyone but some of you guys might like this! Covering it is all I can think to do at this stage. You can't see the problems here it but some really weird curly under growth is thick throughout and makes my head look very square I can't tame it at all. Some sticks out straight from my hairline I have to try and plaster it down and back. My hair actually looks a lot better after I wear my bike helmet! Maybe I should sleep with it on lol!
m
I included this below photo from March 21....two days before my last chemo.
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