Cold Caps Users Past and Present, to Save Hair
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I have to wear a hairpiece and chemo beanie to work now because my scalp is so bald. Haven't resorted to a wig yet. My friend who saw me New Year's Eve and then yesterday was shocked by the change.
So as someone on the AC/Taxol regimen, I cold-capped diligently and kept a decent amount of hair for a little over two months, and then suddenly lost a ton. It happened after four AC chemos and two Taxol chemos. I have two more Taxols to go. I am unsure if I will continue capping because I'm afraid it will be so painful on my almost-bare scalp. Yes, I would like to save whatever I have left, but I don't want to burn my scalp! A different oncologist told me yesterday that she has seen this with every AC/Taxol patient who cold caps... some success initially and then major sheds toward the end of the regime. She said the buildup from the AC stays in your body for a very long time.
Yet there are some cold cap success stories on AC/Taxol. I think if you start out with thicker hair (mine is very fine) it seems you have better luck. I've heard from two different women who did.
The goal is to be cancer free. Hoping for that outcome, regardless of what is or isn't on my head...0 -
Aussie, I'm only 5 weeks PFC and I'm doing regular showers now! No issues!
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Thanks guys for all the encouragement hopefully I'll have the balls to do it Thursday when I'm due for a hair wash I'll keep you posted.😘
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malonejen, so sorry the caps haven't worked for you. That AC is some tough stuff. It is what it is - sounds like you had excessive hair loss despite trying your best. I personally wouldn't want to continue if I were almost bald - too risky for frostbite and would be soooo cold. Some here would. No matter what you decide, we support you!
I am glad to hear you are keeping things in perspective. Yes, we all want to save our hair, and we all have a right to try and do that if it is possible. But if it doesn't work, it isn't the worst thing ever that could happen. It's another loss to deal with, but, deal we must - and we move forward. Sending you lots of hugs!
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Had to share....
Got in from 2nd AC treatment about 2 hrs ago. It didn't take the pharmacy as long to get my chemo out. (Last time I ended up wearing the caps about 45 extra minutes.) This time, I only had the required 50 minutes. With the new thermometer, the caps were the correct temp. (We later found the old thermometer was off between 5 & 7 so the caps were too cold.) Only the first 5 minutes were tough with each cap instead of the first 10-12 last time. We got home about an hour earlier.
Overall, this went so much better than the initial treatment. Thanks for all the support and encouragement.
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Leesa,
Yes! I remember my first cold capping session! It was so stressful learning how to get everything timed right, being unsure of the right temps, etc. The second one seemed way easier! By the time you do your next treatment, it will all just be old hat ( or cap, lol!) Be sure you have extra batteries for that digital thermometer just in case!
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I was given the choice of TC, AC+Taxol, or just the aromasin. I got a second opinion and he recommended TC so I went with that. I know there are women on here who kept their hair with AC, but I think overall those of us on TC lose less hair.
I found out last week that my oncologist is getting the recently FDA approved Dignicaps! I used Penguin but she said one of the reasons she decided to set them up was due to the good results I had with cold capping. It will make it so much easier on the cold cappers now--no more dragging two huge coolers of dry ice into chemo!
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Well I did it I washed my hair in the shower for the 1st time since last May!!! It's good to feel normal!!
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Yay, Aussiegirl! You took the plunge!
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Mazel tov Aussie!
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hey ladies! I'm a newbie and I just received my cold caps today. Needless to say, we will be practicing all weekend😊 I hope I have the same success many of you have had. I will be using the PCC's and I will be taking TCH. I have taken down all the pointers on this board. Any additional styling suggestions would be appreciated. I have naturally curly hair so even though we are suppose to do as little as possible I will have to do something to tame these curls
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Hey Char1110
I can't really help in the styling dept because I have straight hair and I didn't really need to do anything to it but just wanted to wish you all the best you can do this just try (easy to say hard to do) to stay positive ant not stress too much.
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Thanks Aussie girl! Did you or anyone else take silca or biotin while using cold caps? Did it help
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I only started taking biotin and silica PFC. It's been 9 weeks since PFC. Can't tell if it helped but my hair is growing in pretty quick. I got it cut twice since PFC bc I typically keep my hair short. My stylist said my hair feels really strong. Not sure if it helps with lashes and brows but I lost all my lashes and it is coming back pretty quickly as well.
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I only starting taking biotin and hair, skin and nails vitamins PFC like aj93 I'm not sure if it helps but my hair is growing very quickly. I do believe I've read on this thread that a lot of the women did take it during chemo though.
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Been a while since I checked in...been through 2 cycles of AC. Have 2 more of AC then 12 weeks of taxol. My hair was shoulder length, medium thickness. Not much shedding after the first round but about 1 week after the second round, i lost a tremendous amount. I would say about 40% lost and I'm worried about the next round on Wednesday and whether I can handle the cold on a thinning scalp, especially in front and on the top. Some days I'm ready to just say the hell with it and just cave in .... Husband says nope, it isn't that bad and let's keep going...yeah I know it is about getting well but jeez it is the obvious thinning hair that makes this so damn obvious to others....we all know when we get the"look" from others. Seems I've been paying more attention or more worry about my hair instead of all the other stuff we are to focus on- eating right, exercise, minimize side effects,etc. and yes, I've been doing all that too, but the "worry or attention" is on my darn hair, is it really worth it? Sorry for the long post, guess I just needed to get it off my chest..
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Char, I took silica drops while cold capping. I didn't have any issues with my nails, so maybe it helped.
Mikie, sometimes your hair loss is more noticeable to you than to others. Have you tried the Toppik to fill in any thinning spots?
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Hello 😀
Quick question.
Does the chemo get stuck in your body or exit elsewhere, since the cold caps stop it from leaving your body through your hair? What's the shelf life, etc.?
Also, what about taking biotin, silca or kerotin? Any one better than the other or can we take together/alternate?
(I would like my center to order the freezer. The nurse gave me the run around, "I have never heard of that, don't know if we have room..blah, blah." I told her that I would be by with the packet for the dr and all he does is sign amd fax in for the free freezer, not to mention it would be a great asset to add as a service for patients, plus I'm paying the shipping and making a donation, so other ladies have this option. I told her it is a deal breaker without this freezer. Needless to say, I did a drop in to tour as my appointment is next week, called my bc surgeon to rally and talk to MO, got a nurse on board from the office and following up with the resource center. We have to remember that we are educating them in new treatments, etc. and we do not have to choose their facility, for treatment. Also, all she had to say was, sounds great...I will pass the info along and not go into Debbie-Downer. I'll get us that freezer in the center. Plenty of room. Boom! )
Sorry, I cannot find the post on this and I read it on here somewhere.
Tysm!
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My understanding is that chemo is excreted mostly through urine. This is what the American Cancer Society says in their Guide to Chemotherapy:
It takes about 48 hours for your body to break down and/or get rid of most chemo drugs. Most of the waste comes out in your body fluids – urine, stool, tears, and vomit. The drugs are also in your blood.
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Thank you @danceteance!
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hey ladies!
Yesterday I was my first session and I made it through the cold caps. It was a lot of work and I was freezing but we made it through🎉🎉🎉The only issue I had was a little frost bite on my forehead. It was way to cold! I also think we could have done a better job with the moleskin prep. Any suggestions? My husband was focused on my hair line but I don't think we had enough coverage. What did everyone use (brand and how much)? Did it stick to your hair. I think I rather that than the swelling. Praying for minimal hair loss!
Char
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hi all, I'm new and would like some advice on scalp cooling and hair care. Not sure if there is a thread that has a FAQ on what to do during cold capping.
I live in Australia and am using the paxman system. I'm doing 12 x taxol treatments combined with Herceptin every 3 weeks, I just had my 3rd session yesterday. Some questions I have are
1. How often to you wash your hair
2. What kind of shampoo and conditioner do you use
3. How do you touch up your roots, will a hair mascara or mineral hair powder be ok
4. When did the shedding start, was it worse at the start or all along
5. Did you use argan oil or the like at the ends to sort of style your hair as you can't use hairdryers
Would appreciate any help, I have quite thick hair and my oncologist is encouraging the use of scalp cooling with me as he feels that with weekly taxol he has seen good results , he had pictures on his phone of some of his patients and the results were encouraging enough to give it a go
Thanks
Angie
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Hi Char, I ended up using pantyliners cut to the shape of my forehead and hairline before putting on the caps. They aren't quite so sticky and worked just as well, although I looked quite silly!
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Hi angiesgo! We just wanted to stop in and say hi and welcome -- you've found the best place for support and answers on chemo caps! This group is incredible.
We hope you find everything you're looking for here. Please keep us posted on how you're doing.
Looking forward to hearing more from you!
--The Mods
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I don't care how silly I look...lol. thanks tshire
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I used the moleskin but left about 1/4" of the adhesive backing of the edge near the hairline on the moleskin - so my hairline was covered but the adhesive wasn't able to get into my hair.
Didn't know that the first chemo, and ended up pulling out so much precious hair at the hairline trying to remove the moleskin. Ouch! And frustrating! So I put the moleskin on further away from the hairline the second time = line of frostbite. Ouch again! Third time was the charm. Figured out how to cover the hairline enough to protect the skin, but not with anything adhesive which would pull the hair out upon removal. I tried to explain that in my PM to you but not sure I conveyed it very clearly! Sorry! Hard to explain.
The pantyliner probably doesn't stick nearly as much as the moleskin, so maybe that is the best answer overall.
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Hey angiesgo
I'm from Australia too I used organic care shampoo and conditioner it's paraban free got it from Priceline. I can't really help with the hair washing question because I was on a different regimen to you but I'm sure someone will chime in. I didn't style my hair with anything while going through chemo even now 6 months past my last chemo (PFC) I don't use anything just straightening it. I started shedding about 2-3 weeks after my 1st chemo. Good luck with it all.
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angiesgo, I also had 12 weekly taxol and herceptin, although I used the Penguin caps. I washed my hair usually twice a week. I used an organic shampoo and conditioner but can't remember now what brand - gosh, it's been more than three years ago now! On my roots I eventually used the stuff that you apply with what looks like a mascara wand, and later the similar stuff with more of a magic marker type applicator. It helped, but wasn't great at covering the gray. I had very little shedding at all. I don't know how well the Paxman cap fits your head - that will make a difference in your shedding. I didn't use anything extra on my hair - just let it air dry
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Update
Had my 2nd AC treatment on Jan 13. Treatment went faster. Capping was easier & better.
My hair started shedding the evening of Jan 20. It's still shedding, but with relatively thick hair, I am likely the only one who can tell. Had dr appt on Jan 21. He is pleased with how treatments are going, and he says things are exactly where they should be. He was surprised that I still had a head full of hair. He had expected it to all have been long gone by now. He has not had a patient use the caps before. He is interested in how this works out for me.
My 3rd AC is scheduled for Wednesday
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I've been seeing ads on TV about a lawsuit against the manufacturers of Taxotere. It's about time! There's so much rhetoric about govt., corp. etc being transparent with their info. I guess it takes a lawsuit for that to happen. Has anyone else see the commercials? I also got an ad on my Facebook newsfeed. http://www.taxoterelawsuits.com/
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