Cold Caps Users Past and Present, to Save Hair
Comments
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Goldenpaws - Some girls have had their hair done back to their natural color so that their roots won't contrast as much. If you are going to do that, I would do it soon as it's best to have some growth of natural hair at the scalp line to avoid chemical damage. I lightened my hair six days beforehand and ended up with extensive damage later that I caused to myself by coloring so near chemo and cold capping. Don't make my mistake. I think Penguin advises at least two weeks, but more would be better.
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I heard from several people here that hair continued to shed for 4 months (16 weeks)... Is that what most of the people have experienced? I'm at 6 weeks PFC and still shedding. My hair is getting thin, especially on top, which wasn't a concern for me during chemo. I still have just enough to cover thin area, butI'm worried that if shedding continue for another 10 weeks, I won't have much left.
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JeniferE-good luck with everything. I am also setting up surgery dates for next year. BRCA positive so I'll be doing several....it'll be a long year but will get through as will you!
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Hi HockeyCat,
I am one of those still shedding- and it's about 6 weeks PFC for me, too. I just started using one of Phyto's hair loss serums: http://www.phyto-usa.com/needs/hair-disorders/wome....
It's too soon to tell if it works for me, but I do feel better that I'm doing something about it. I haven't looked into whether the ingredients are cold cap user safe but I was panicking so I used it:-)
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I'm wondering if I should keep the caps longer and put them on my head after I complete chemo! I don't want to go through all this and lose my hair four months down the line!
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I had ACT regimen and shed quite a bit throughout chemo, heavily about a month or so in. I continued for about 9-10 weeks and then it suddenly stopped.
You'll make it! Hang in there.
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harrysmom, hope that the serum works. Keep me posted, please!
Leslie, lol. If cold capping would help, I'd do that too. ;-)
Kazzy, thanks! I can't wait for that moment shedding suddenly stops.
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I am 6 weeks PFC, and I shed fairly consistently throughout chemo, though more heavily in the week after each treatment. For me, the shedding is tapering off gradually, but it is now down to a very non-scary amount. I'm not actually sure I''m losing any more hair than before chemo, but I'm still being careful just in case.
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hi ladies - I am one still still lightly shedding 12wks PFC but it has definitely slowed down.
I was pretty worried about it for a few weeks, but am relaxed now - it's clear I will have plenty of hair whenever it stops fully and I am sure it will at some point. I have reverted to normal hair washing which has made me feel better (and I don't think has had any detrimental effects on my hair).
I know it's scary, and annoying (for me I had a mental 'end date' of 4wk PFC, and was super disappointed when that came and went). But hang in there ladies - we are not pioneers :-) many have gone before us and can give testament to the caps working
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When did everyone go back to their usual hair washing routine?
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I waited 4 months to go back to my usual washing routine - I waited until my shedding slowed markedly, which for me was the 4 month mark.
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DEBeachgirl - I just did 12 rounds of taxol/herceptin at Sloan; a hospital not exactly cold cap friendly. The doctors told me I was going to lose my hair. They are eating their words. I just came back from my hairdresser. She gave me my prechemo to trim and just cut two inches today. She confirmed that I did not have any hair loss. She's been cutting my hair for years so she is familiar with my hair. Also, I had no split ends , dryness, scalp issues- nothing. I have good hair but recommend using good products. So I feel like hot garbage but my hair is good. Good luck
Leslienva- your hair looks great!
Gingin - gorgeous.
Seems like the site is slow tonight. Sorry for any typos!
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Hi Harrysmom, hockeycat, RainDew and any other PFC hair shedders....I'm 7 wks PFC...and still shedding.
I am also on Tamoxifen and was wondering if my hair loss had to do with Tamoxifen too?!?!
I was at a party tonight and my friend swears she can't tell I've lost a lot of hair....just that I wear my hair differently (yeah I can't style it!). I know I'm lucky to have hair and as much as I do....but I can't continue to lose as much hair as I am losing daily for another month let alone 2!!! I touch my hair and 5 hairs fall out. I have to de-shed my sweaters after I wear them. I have to take hair out of my food every time I eat....it's ridiculous!
And to add to my crappy thinning grown out hair, my dark circles and aged skin....my permanent implants ( transfer was 11/25) don't match. I think one shifted too and has a completely different shape than the other. I see my PS tmrw... He doesn't take insurance plus my insurance is changing come jan 1st and I won't have out of network benefits...so not sure what happens. Hoping new insurance will pay to fix them...and fat grafting to make more natural. Oy...when will this S*#% end?!?!?
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Where can you purchase or rent a cold cap in the UK? Thanks!
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Penguin Cold Caps is a UK company. Just log on to the website. penguincoldcaps.com
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Hortense: Thanks for your advice. I'm a lot lighter than my natural color and have highlights. I"m heading to my salon on Monday to go back to my original color. That will give me about 3 weeks before my first treatment. She's going to use a non-peroxide color ... hoping it won't be too harsh. I'm so freaking nervous about this cold capping thing. When do I need to place my order to get these before my first treatment? My oncologist is very cool about cold capping so I think it makes it a little better easier but just scared of everything. I keep telling myself -- ONLY 4 TREATMENTS! I'm doing a few pre-meds via orally. Is this normal or do most get their pre-meds via IV? I know there is no good time for cancer but REALLY??? At Christmas
Hope everyone has a wonderful holiday. Feeling blessed it was caught early and can be treated. -Kim0 -
Anyone starting to ColdCap in the Bay Area? I have two igloo coolers for the 8 caps to give away. Message me and we can set up a pickup in San Francisco.
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Jennliza I am also 7 weeks PFC and also constantly shedding. But when I look at myself in the mirror I still have hair covering my head. I also hate that everything is taking so long to get back to normal. My nails are still black, my face is sallow, and don't even get me started on my hair. It is so thin, the new growth where I had bald spots is coming in white. I can't believe how much white hair I have. I am scared to color and to get it cut so soon. I usually put it back or wear a beanie with my thin strands hanging out the bottom. I am waiting for the end of Jan to get a cut and color, it will be 12 weeks and hopefully a good time.
I hope your shedding will suddenly stop like some of the women here experienced. We made it this far, we can go the distance.
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Daniella - I am so proud of you making MSK eat their words. Maybe, someday, it will not simply allow cold caps to be used, but will embrace their use.
Re: skin - For those finished with chemo and who are upset with their aged looking skin, it will get better. I could not believe how much older I looked than I used to, and glumly thought it would be that way forever when 10 months PFC I still looked ashen. I asked my oncologist about it at a check up and she said I was free to do whatever I wanted to improve it. I started by changing my facial soap from Dove to Cetaphil at the recommendation of a new dermatologist, and almost immediately saw a brightening. My previous doctor had recommended using Dove - he was wrong.
I also began to exfoliate regularly with home-made oatmeal-honey-lemon masks and my skin improved enormously: grind 2 -3 tablespoons of dry oatmeal in a coffee mill or blender until fine, put it in a small bowl, add a tablespoon of honey and a healthy squeeze of lemon juice, about a teaspoon. Mix thoroughly. Be sure your hair is pulled back out of the way, smooth the mixture all over your face and leave it on 20 -30 minutes before washing it off. Add more ground dry oatmeal to mixture if it is too thin and drips as you apply it. Honeys vary in moisture content. I use the mask half an hour before showering so it is easy to wash off there. Use a gentle circular motion to help exfoliate the old cells as you wash the mask off.
My 30 year old daughter uses this mask too and loves what it does for her skin. Any mixture not used can be stored, covered, in the refrigerator for a long time. Bring it to room temp to use again.
I wish I had started working on exfoliation long before I did. My skin looks great now. I get compliments on it all the time and people think I look younger than I actually am. My advice to everyone finished with chemo is to exfoliate regularly and you will see brighter healthier skin. I used a Dead Sea mask yesterday and it worked beautifully.
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Hey all! I'm halfway done with my treatment. #3 out of 4 is tomorrow. I went for my check up with my oncologist on Friday. She walked into the room, literally her jaw dropped, and she said, "Oh my gosh, your hair!!!! It's perfect!!!! I'm a believer!!! I'm going to tell everyone about this!" She's the one who had told me about the cold caps but no one had ever used them in our facility before so everyone was kind of hesitant. I'm 9 weeks post first chemo, I should absolutely be bald right now. I still have two more rounds to go, but here is a picture of me from a week ago.
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You look great jennjdance! It's also good to hear your onc is convinced and will mention capping to others!
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jennJ - you look so good! It's great that your MO is now a believer - we need more like her for sure! Many of our docs think we are the 'exceptions' to the rules and that the caps overall do not work….grrr. Of course we all know if they ever get FDA approval and they can bill insurance for them, every patient will have them. Keep up the good fight cappers! You are all doing great!
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Tis the season to Believe!!!0 -
I'm at 7 weeks PFC. My hair still shedding but I noticed some hair regrowth! Merry Christmas to you all.
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I've been shedding like crazy the past few days. I'm probably losing 100 strands or more a day. Ugh...at least 10 strands come out at a time. Is that about right?? I had my third C/T round on the 15th.
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HockeyCat that's great!! I hope you are turning a corner!
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JoeyJamesMom - I am about to start ACT treatment, but have been warned that Adriamycin is particularly harsh and does not respond well to the Cold Cap. What percentage of your hair would you say you retained? And do you consider it worth the effort to use the cap. I am starting 4 rounds of AC on January 12th, followed by 12 of taxol. I am so on then fence about whether to try the colds cap..
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hi brooklynne. I actually did 4 AC rounds and so far 4 taxol rounds. I am also pregnant, so that may have contributed, but I have had no hair loss. I will post and update after delivery to see if I start shedding more than the post pregnancy amount for me. I was so discouraged when leaving my MOs office that first day, he said its a big hassle and won't work. HE. I almost shaved my head that day to take charge. But my BS, SHE said try it, 50/50 chance, even with AC. My husband said, try it, I will help you cold cap. It has worked incredible well for me. I take an Ativan and Vicodin at the beginning and by the forth cap it's fine. The first 5 min of the first cap is tough, but they get easier, much easier. I also only wash my hair once per week with a lukewarm rinse, and have been using a satin pillowcase. My hair is back in a soft headband most days and that's it. I would try it. You can always shave it if it's not working. Good luck
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couldn't write a caption above. It's not blown out, I have big dark roots, but it is still there. My doctors forget I went through chemo, although I still. Have eight taxols to go, my hair (leg, body) has been growing back
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