Cold Caps Users Past and Present, to Save Hair
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I'm still shedding when I wash at 10 weeks PFC but not nearly as much and my bald spot it filling in to the point that I don't have to use the Toppik any more. Hoping the succeeding slows down over the next couple of weeks.
Best of luck to everyone that is cold capping, I believe that it's worth it.
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Tunegrrl- hahahaha... OMG, those images... just what I needed to see on board catch-up, thank you for posting!!!
When I went in for a plastic surgery consult the other day, the surgeon asked, "you must be cold-capping... it's working." And that made me feel pretty good, despite the fact that my hair's all scraggly and thinned. But heyyyyy, it's hair!
I feel like I've never worked so hard to do so little with my hair each day, but it's been worth it so far. The nightly cursing/swearing upon seeing shed hairs and lashes seems to be diminishing. I know I'm going to keep shedding even PFC, but if what Penguin CC says is true and I've already gone through the "big sheds", then I'll be happy.Love you all- hang in there and keep capping! Thanks for making me smile.
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Hello!
For those of you who are PFC when did you start washing your hair more frequently? Or did you have the need to wash more frequently? I am only 5 weeks PFC and my hair is so oily just after one day. I have reduced the amount of conditioner because my hair is so thin it doesnt need as much. While going through chemo I could go a week or more.
Going to radiation every day is a new challenge of trying to look presentable and of course one of my technicians has long thick beautiful hair.. Even my nurse who did my chemo had the most beautiful hair. They should all be required to be bald 😊.
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Luvmyys: I was wondering the same thing. I still have one more round of t/c, but I'm so tired of looking terrible! I feel like I can only leave the house on wash day and the day after! I'm also wondering if anyone colored soon after they had their last chemo? I'm not sure how much longer I can take this grey!
Another question: When do you lose the eyebrows and eyelashes? Mine are thinner, but still there. I'm just wondering if I'm going to wake up one morning and be without!
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Hi Catgirl!
I feel the same way.. wash day I am ok with leaving and maybe day after.. since I'm 5 weeks PFC and my shedding has slowed to zero hairs last wash and 2 hairs wash before, I am going to cut mine real short very soon. The length that is left is so damaged, maybe due to the extreme cold of cold capping or just chemo itself. My hair is normally a light golden blond with help from my hair dresser but now it's mostly mousey brown, I have huge black circles under my eyes.. my coloring is just off with my brown hair.. my eyebrows thinned mostly after chemo along with my eyelashes. Never lost all of both but thinned considerably last infusion and PFC..
I think one capper colored 11 days PFC, I know her name was IL111 or something like that.. she hasn't reported back on the final outcome. I know she came back and said she shed more after color but haven't heard back since..
If I was staying in the house like before radiation I wouldn't care so much but going out now every day I am uncomfortable. I am sure the radiation technicians have seen worse, but ugh.. it's hard..
Sorry for the whining..0 -
Does anyone know how effective cold caps (Dignicap) while on AC+T?
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tunegrrl- did you say tamoxifen is estrogenic to the skin? Where did you find that info? My friends have commented how great my skin looks and I think so too but was starting to worry my skin was going to start looking dull with the tamoxifen. I haven't really had any bad side effects and I started it in August. At first I had some hot flashes but now they are much less frequent and not bad at all. Somewhere around October or November my ovaries started working again so maybe that helped? Anyway, the most annoying thing is my night sweats have returned. They aren't the horrendous Lupron induced, bed sheet-soaking night sweats I had during chemo, but I do wake up moist (but not drenched). Still though, it wakes me up. It's really too bad that at a time when you really need restful sleep, you have to have these night sweats. I'm cold all day long at work but for some dumb reason I have to be hot at night.
Anyway, I was just wondering how you found that out because my searches turned up nothing.
Oh! And my new hair is really coming in thick. It's almost long enough to fit in a ponytail with my hair that didn't fall out. And life goes on I guess. It's so weird that a year ago I started this process. It was miserable but in some ways I wouldn't change a thing. I learned more about my strength and determination than I never knew I had.
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Hi YKH!
Sorry you are here.. I used Penguin Cold Caps on AC&T. My hair was shoulder length very thick light blonde. I lost probably 75% of my hair but I have no bald spots, just very thin hair. If you didn't know me you would think I just have bad hair. I lost the majority after AC was done and after my 2nd Taxol. I did 4 AC and 4 Taxol. My last infusion was 5 weeks ago and I have 3/4 inch of regrowth. I did get two hair cuts after I started just to get rid of damaged ends and the shorter for me the thicker my hair looks. Once done with themajority of shedding and hair feels strong I will cut real short so all hair growth can meet up.
Everyone is different but AC&T is probably the toughest protocol for your hair. To cold cap isn't for sissies, it's hard, but this site and thread is the place to be for support, questions and product recommendations. Great group of ladies here to help. Good luck!
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Hello everyone I have been reading all of the posts and decided to do the penguin cold caps. I had a reoccurrence after five years I found out in January. I have been researching the cold capping as I did not have chemo or radiation the first time around.
Thank you for all the information on the boards. I have my first chemo session on March 15 at 9 AM. I am doing the ACT so it is encouraging to see that some of you on here had the same treatment and kept some or most of your hair.
I am researching shampoo and conditioners if anyone has any recommendations that would be awesome. I see some people write down a brand but not which type and there are 1 million different kinds 😁 so I'm hoping someone can write down the brand and type to use.
Also your best tips and suggestions I have read through countless hours on these boards thank you!!
I am scared for this journey to start again but excited to get it over with! I am thankful to have people like you that can relate to what I am going through !!
❤️ M
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Welcome, Molly! I'm sorry that you are joining us, but this is a great group. I am using the Acure Hydrating Shampoo and Conditioner with moroccan argan stem cell + argan oil. The Shampoo is in a white bottle with orange letters and the conditioner is in an orange bottle with white letters. I ordered mine on Amazon, but I saw it at Whole Foods the other day.
I'm also using Essential Eyebrow Solution to try to keep some of my eyebrows. I ordered that on their website. I started using it after 2 rounds, so we will see if I started too late. It is also supposed to help with thicker regrowth.
I also had a previous go-round with bc. No chemo the first round, so I know this time is much more stressful for me. I am using Penguin Cold Caps with my T/C chemo treatments. So far, I have saved more than 70% of my hair. I have one more round to go, so we will see. It seems quite a bit thinner to me, but others don't notice.
Good luck on this journey and don't hesitate to ask questions of this board along the way. This is a fabulous group of gals!
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Luvmyys--Have you tried dry shampoo? I use it on my daughter's hair. It sprays on like a powder , then you rub it in and brush. The Dove brand smells so good, I'm not sure the chemical content of it though, but maybe some sort of powder may do the trick too, just to give you a couple extra days.
ykh & molly--welcome! I think someone recommended the Acure brand shampoo/conditioner. As long as it says paraben and sulfate free, you should be good. I use a Hask brand conditioner that smells amazing (Macademia Oil is on the front label), smells like almond.
Catgirl-- I'm 7 weeks PFC and I lost most of my lashes around week 4-5 PFC. That's when my eyebrows really thinned too, although they are still hanging on, just a few bald patches that I fill in and they get thinner as they get towards the corner of my eyes. I've been using WOW powder the whole time and this weekend had a funeral to attend so grabbed the L'Oreal spray--I LOVE IT!! So much more coverage!!
I am envious of those who see growth. I'm 7 weeks PFC and don't see anything remotely wanting to sprout!
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Pamela: I know what you mean about more coverage. The Wow and Madison Reed are ok for touch ups, but I'm getting to the point that touch up isn't enough. A spray would be better, but I guess I should continue to baby my hair until I'm finished with my last round. It sure is hard! Oh well, at least I have hair!
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Luvmyys, did you hire a capper? Do you know if any other brand (for ex. Arctic Cold Cap system) works better for AC&T? You said you had 4 Taxol. What was the frequency? Thanks for your help.
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yky, I might be able to offer some ideas. I am done with the first round of AC, sounds like you have a similar protocol. The Rapunzel Project has information on the cold caps. A in the AC is the toughest on hair and they have some statistics on which caps "might" work better for that. I chose Penguin Cold Caps due to their higher success rate with A. It is a science experiment though and I am cautiously optimistic. I will be having Taxol x 12 after AC, DD x 4. A brutal regime for hair.
I hired a cold capper, a friend of a friend who needs work and pay her an hourly rate. Is there someone you know looking for part time work? I have friends who have offered to help too so there will be 2 people at most of my infusions. This is the time to round up the people in your life that want to help. Most want to and don't know what to do so here is the opportunity. I was lucky and was connected with a woman who did the same chemo and cold caps last year at my center through my Nurse Navigator. They wanted to Pay It Forward. Lucky me. She and her mom came over to my house and did a demo for us, gave me tips and came the first day. It went well with their help. The videos and instruction sheets are helpful too. Admittedly, it is very confusing and since we are all scared of chemo, your mind is not functioning as well as it could. Thankfully, Catgirl2 came to my rescue the night before my first infusion and saved the day with sage advice. Feel free to Personal Message us if you have specific questions.
PPC has a new system with just one cooler and 4 caps. It is a juggling act but easier than the former 2 cooler method in terms of size and getting it to the center. I use padding for my ears and head made out of panti-liners and I have a spray paint hoodie (very lightweight) on my head the whole time. This prevents frostbite AND keeps my part invisible as it is lightly pulled back - straight back equals no part line. It also shields my chin from the chin strap. That strap bothers a lot of people, but it did not bother me as I had something in between that and my chin. This alternative method was devised by my experienced cold cappers. I buy dry ice at a local vendor who gives a discount to us Cold Cappers. I bought it the night before and only needed 40 pounds after all was said and done. Something to consider as the costs add up. Call around and see if anyone will offer that to you as well. Most Dry Ice places are aware of this now thankfully. My place now has a standing order for pick-up for me. Anything to make things a bit easier.
I too am using the Acure line of hair products. I am washing in the shower, with tepid water, on a very light spray. The PPC people suggest sink washing, but that would actually pull on my hair more than the method I am using. TJ Maxx had satin pillow cases. They were difficult to find for some reason. I made a few of my own, but bought some of those for pillows on the couch while watching TV. Can't pull on the hair with regular pillows so covered them in satin. The thermometer that comes with PCC is a piece of junk. Do not count on it!! I have a Home Depot laser monitor and back up batteries. Worked great.
Arctic Cold Caps offers great service as an FYI. Everything you need in the kit they send to you. If I had not had to have the A chemo, I would have gone with them. And the Eyebrow serum mentioned above is working for me in terms of new growth. Essential Eyebrow Solutions. I started a few weeks ago and have a lot of new growth in areas that were thinned from over plucking years ago. Hopefully it will help down the road for new growth. I will report in my findings on that science experiment as well, lol. Too bad they can't help with the gray brows that are coming in. Yikes.
Results seem to vary from person to person on this forum but all have kept their hair to some extent. The woman that cold capped and mentored me saved 50% of her hair on AC + T (12.) That is easily passible in public and she looks great now (6 months post chemo.) One thing I keep in mind is that this can also help facilitate NEW growth as well. If it does not keep enough hair for me to feel comfortable in the outside world, at least the hair follicles have a better chance at new growth after chemo is completed. An insurance policy. The women in my chemo group all look great with their wigs, so I look at that as a positive as well. We have choices that can work for us.
A shout out to all the ladies on this discussion board for all of their help and support, I so appreciate everyone's comments and updates.
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than you so much for replying! Yes this time around has been different but I am determined to get through this and hopefully never reoccur again!!
I was for fortunate to have surgery then get to go on vacation before I start chemo. Now that I am a k I am feeling all kinds of emotions.
I did order my penguin cold caps yesterday so I feel more ready!
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Hi YKH,
Yes, I hired a capper, that worked for Penguin. They brought everything I needed to Cold Cap. All the caps, cooler, pads to line forehead and ears. I didn't have to worry about anything. They are expensive but it was worth it for me.. I believe Penguin had the best success rates for capping from what I have read but from the experiences in this thread I think each experience is different. Most have had success on all brands of caps. I lost a lot of hair and had a lot to lose. I have seen others do really well with AC&T. I followed all the Penguin instructions with the exception of 2 times I blew dry my hair on low warm setting, holding the ends out so not to warm my scalp. If this made the difference in my success, I don't know.
In my opinion 5 weeks from final chemo I don't need a wig, I see other women with just as thin hair out and about. My kids don't know what I went through and once shedding is completely done I can cut it shorter and in a few more weeks add some color and people will just think I changed up my style for summer. If I didn't cap I would not have that option, I would be bald with spotty peach fuzz. Capping is tough and until you go through it completely, you don't know how tough. It's a guessing game as to how much hair you will lose. While most of the time the outcome is good with no regrets, getting there is hard. We are all here to support you, but it's no harder then why you're here already and it does offer a little distraction.
Good luck and good thoughts to you while to make your decision.0 -
Again, I am so grateful for everyone who posts to this site! A wealth of info and encouragement.
I am at day 35 of 12 weekly treatments; colored my hair two weeks prior to 1st treatment. I now have 3/4 inch of totally white outgrowth against my dark brown colored hair with golden highlights. Pretty brutal. I've been using the WOW powder, but finding it harder and harder to achieve good coverage. My mindset is "one day at a time", but find myself worrying what on earth this is going to be like in another month! I am still working, so don't have the option of hiding out.
So my question, has anyone used another color touch-up that was effective and didn't compromise capping results? Thanks for your help
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Hi Fastgirl, I can totally relate! I colored my hair a week before my T/C treatment in January, about 2 months ago.. I only have one more treatment to go on March 22. I have almost 2 inches of grey growth in my brown hair. It is increasingly harder to cover with the WOW and Madison Reed. I cheated today and used a spay on color that I know is not recommended. Unfortunately, nothing seems to cover like the spray and I think it all has alcohol and other bad things in it. I started with really thick hair and I notice it is thinner on the sides, but other people just think I cut it a little differently. I'm not sure what the answer is to the grey coverage. I will probably be one of the people that colors before it is recommended. I just hope I don't regret it! Hopefully, someone else on here has an idea for touch up that we don't know about!
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I just switched over to L'Oreal cover up spray over the weekend. I'm 7 weeks PFC. Here's the ingredients:
1162053 E: Hydrofluorocarbon, 152a, Butane, Ethyl Trisiloxane, Isobutane, Ci 77499/Iron Oxides, Trimethylsiloxysilicate, Methyl Trimethicone, Triethoxycaprylylsilane, F.I.L. # D179540/2,
I thought IL311 was using this during chemo, you may want to private message her Fastgirl. She also used a semi permanent color (Clairol) 3 weeks after chemo and I followed up with her last week privately and she said she doesn't think it effected her hair at all and encouraged me to try it if my hair got too bad.
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Fastgirl, a few months ago jstan81963 recommended a peroxide-free super gentle but effective hair colour for covering greys that sounded so great, i almost ordered some myself and i don't even have grey roots. Was thinking of their apricot-toned colour rinses just for the pretty colour. Anyhow, i dug up some of the conversation she had with our dear willa, in case it is useful to you -
Nov 28, 2016 11:33AM jstan81963 wrote:
"Meow, I used Daniel Field (from UK) its a powder that you mix with water and shake until it turns into a foam. It covered perfect and(knock on wood) ever since i colored i have had less shedding. I will be 18 weeks PFC this Wednesday and I colored on November 8th."
Nov 8, 2016 06:49PM jstan81963 wrote:
"willa216, yes i ordered the Daniel Field online (http://www.danielfieldmailorder.co.uk/index.asp?) the shipping to U.S. wasn't that bad i ordered 2 different ones because i was unsure of the color, i think it was $25 total with shipping to MA. its a powder that you mix with water and shake then it turns into a foam, my hairdresser put it on for 45 minutes then rinsed."
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Okay so...I had Lupron injections to protect my ovaries during chemo to reduce the chance it would tip me into early menopause. I just got my bloodwork results back, and i am vividly NOT MENOPAUSAL!!!!!
The lupron served me well. That was one more thing cancer was going to take away from me. Not this time muthafuckas!
(Not hair-related know, but i didn't quite know where to put this and wanted to share. You people are my besties on BCO.)
In other news, i made a deal with the devil and had great hair on Monday. Tried a new product: Andalou 'age-defying style cream thinning hair treatment'. It did everything it said it would. My hair looked pre-chemo-esque all day. Hid the mullet gloriously. Almost the holy grail of hair products. But it exacted a price: it increased my shedding by about 30% for a couple of days. I think because it adds some friction and grip to the hair.
Be warned, girlies!
Will i do it again, yes yes i will. But only on special occasions.
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Awesome news Tunegrrl! Sorry about the extra shedding but some times it's worth it......
How many weeks PFC are you? I can't remember.....chemo brain LOL
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thanks, kshorten!
19 weeks PFC today (four months and a bit)
Best wishes to everyone
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Catgirl2, Pamela23, Tunegrrl--thank you SO much for sharing your experiences and digging back into the thread to find ideas for me! Y'all are great!
Tunegrrl--great news about your blood work! I hear you say how important it was to you to not be thrown into early menopause, so fabulous news for you! And thanks for sharing about the hair product. I think your hair looks great , and appreciate you sharing throughout this process.
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hi everyone, I'm gonna need to also switch from Wow to something else. Maybe that L'Oréal spray. I saw the commercial. I'm 2weeks PFC and the shedding is normal. But my hair looks thin. I just want to look normal again. Want to put my hair up in a bun like before. My hair looks best also on wash days.
Catgirl, yay your almost done. Bet you can't wait.
Pamela, have u seen any new hair growth.
Hugs
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HI ladies! This is only my second time posting, but I love reading this thread. I am 6 1/2 week pfc and I also have a lot of gray. I used penguin cold caps successfully - kept about 60% of my hair. It's already growing in around my face and temples. I did have a few thin spots on top and around the ears, but overall, no bald spots.
So I bent the cold capping rules a lot. I colored my hair twice during chemo and I've colored it once post chemo. I used Tint of Nature all three times. I got it from Whole Foods, it's about $17/box. I think it worked OK, it covered most of my gray, but the color faded pretty quickly. When I colored during chemo, I shed a lot, but I felt like it was worth the extra shedding to get rid of the gray. I colored it about 2 weeks post chemo and hardly shed any hair at all. I think my shedding days are nearly over, but I still only use a wide-tooth comb, I don't blow dry my hair, and I only wash my hair every other day just a little hotter than luke-warm. In between coloring, I use Wow, Everpro gray away, Ardell Touch of Color (it's like a mascara for your hair), and I also used a spray (I ran out and don't remember the name of it). I got the Wow from Amazon and I got the other three products from Ulta.
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STinAZ, Thank you so much for sharing your coloring experience. I haven't tried to color during chemo. I have less than 2 weeks until I'm finished. I have started using the spray touch up because nothing else is really covering. I'll be coloring as soon as I feel safe after I finish. My hairdresser is willing to try any color that I feel comfortable with, but my grey is hard to cover without the harsh chemicals. It's funny, but this hair thing has been the worst part of treatment for me. I'm so thankful that I found out about cold caps. I can't imagine how awful it would be to go through this and lose all of my hair.
You gals are the best! Have a great weekend!
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Catgirl2, the "hair thing" has been the worst part for me too!! Sounds like we have similar hair issues--my grey is so hard to cover too. Glad to hear you've had success with the spray--I will most likely try it later in this process. On #6 now! 6 more to go. Have a great weekend
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Thanks for all the tips on coloring gray posters! This is a humbling experience to say the least, saving the hair, but it looks terrible all of the time. Yuck. I ordered Daniel Fields just now. Sounds like some of the cold cappers used this during chemo? Please say yes. . . .
I have Wow powder that is just ok for coverage and the magic marker/wands that seem to work better. I used the Whole Foods coloring 2 weeks prior to chemo and it did a good job but of course now the gray is coming in. Might break down and use it in a few months. Guess I will wait and see how bad it gets. Keep the ratings and reviews coming in ladies, very helpful!!!
Catgirl2, is the Eyebrow Solution working for you? Mine are getting thicker each day. I know they will leave me down the road, but I think this stuff really works on a normal person without chemo coursing through them. Happy I gave it a try for now.
Congrats Tunegrrl on your non menopausal status!! Something to celebrate.Here's to hair being a much needed distraction through all of this. oxoxoxo
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lovesgreenthings,
Thank you!!!! For the eye brow solution name!!!!
Kbt
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