Cold Caps Users Past and Present, to Save Hair
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Phaila,
I don't know if your hair is falling out because it's being pushed out by new growth, or something else is going on. We all seem to have some what different experiences with the capping. I'm guessing the shedding you're seeing now is just the final roundup of any hair that has stuck around till now, but has been progressively weakened during chemo, so it can no longer go the distance. If so, once that damaged hair is gone, the shedding should stop.
I only had one small area that seemed to regrow any at all during treatment. That was a nickel-sized place on my crown that got sore and burning by day 13 of the first cycle. I lost most of the hair in that spot before cycle 2. I did get some little stubbly regrowth there toward cycle 4.
I finished chemo in August and I would say my hair looked its thinnest and worst looking around November due to post chemo shedding. Then I started noticing the evidence of regrowth (little black dots, tiny sprouts of hair 1/2" long, feeling a kind of stubble at my scalp). That would put the timing around week 11 pfc like you said. I had been pretty scared and worried because it was taking so long to see regrowth, but some of the wonderful ladies on this thread explained to me the same thing I'm passing on to you. So I would just be patient. You are not that far out of chemo and most likely, your hair is just now starting to look around and say "Whaat just happened?!" Seriously. I didn't see squat as far as regrowth at 8 weeks pfc, and boy, was I bummed. But 3 or 4 weeks later all the signs were there.
My stylist, who knows my hair better than I ever will, estimates that I lost 25% of my hair, 30% at the very most. It sure seemed like more to me! It is growing really fast now. I have to redo the highlights every 6 weeks and there is over an inch of new growth each time I go in to see her. Once your hair gets over the shock and starts growing again, it takes off pretty fast.
Hope this helps :-)
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Hi! Thought I would check back in now that I am feeling sort of human again, lol.
Today is three weeks pfc for me, my last chemo had to be changed to AC after a crazy reaction landed me in the ER, first three were TC. I am definitely in the midst of an AC shed right now. Just the last few days I have had a shed that rivals the first one and it is making me crazy! I still have decent coverage but it is definitely thinning a lot more. I would say 40-50% loss at this point but I had super thick hair to start with so overall it isn't as bad as it could be. I also have short hair with quite a bit of body in it so the humidity is actually helping where it makes it puff out a lot more so it looks fuller than it i, lol, first time I have been happy about sticky summer weather! Hoping this shedding slows down in the next few weeks and then I can't wait until I can get a trim! I will have DH take some pics later that I can add to show where I am at now compared to where I was at the last time I posted pics, which was right before TC #3 I think.
Hair wise, I did much better with the TC than I am doing with the AC. My body also tolerated the TC far better, the AC side effects have been much, much worse for me. I am also slated to start tamoxifen soon so I am worried that is going to make the shedding even worse. I am hoping that since I still have hair now the odds of it all coming out from the AC are slim but we will have to wait and see on that one.
Runner - you look great! It is awesome you are having such great hair regrowth already!
Phaila -hang in there! I will keep my fingers crossed for you that the shedding/loss lets up soon!
Many happy thoughts to everyone in the midst of this - chemo just plain sucks!
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Runner70,
Thanks for clearing up the anesthesia myth - I've heard it from so many other people that I never questioned it. Good to hear it straight from the horse's mouth! :-D So it sounds like just overall stress to the body, not anesthesia, could be the culprit.
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I am now into my shed after my first AC cycle and it is a lot of hair!! I started with a lot and I did THP first, so it was already thinned from that, but this shedding is definitely worse in a single day than anything I had with that treatment. I am hoping that I am having a "big" shed day (7 days post-treatment) and that it will taper off. I had more of steady shedding with the THP so losing this much hair at once isn't what I have gotten used to. But thats the way this works, right? Once you start to plan on something it changes. Remarkably my part and crown are still pretty well covered, so even though when I lift my hair I see a lot of thin spots, its not that noticeable when my hair is just hanging down. Fingers crossed that it stays that way! I, too, am thankful for the humidity for the first time in my life- I'll take all the fullness I can get! Three more cycles... we will see what I can hold onto. It also seems like my hair breakage and dryness is MUCH less than it was on THP just shedding but not little pieces of hair everywhere as I had been losing. Also I have not been having the scalp tingling.
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Hi all I am now on day 15 of AC and a day after my second AC cycle and 4 X Thp as well. My shedding during first AC was much more than THP as well. I was expecting it to start much later day 17-21 as I guess that's what happens with those who have not done chemo before.
Met a lady who runs a cold capping company and has been capping for 6 years, her view for what its worth was that the shedding if even and controlled is not too bad as hair is growing back and weaker hair are being shed. Hair growth is slower in AC than Thp but there is growth. Fingers crossed that there are no more big sheds.
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Hi Revnet.
Hair shedding patterns really vary from person to person so it's hard to generalize. I never had a big shed, just slow and steady hair loss that I noticed mainly when I washed. My shedding continued for about 4 months PFC but I didn't end up with any noticeable bald spots- just thinner hair. You should start to see some shedding around day 21, about the time of your second TC infusion. Think positive and hang in there.
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Phaila I still get that strange burned chemo scalp too. I'm having it today. Some of it is over bald patches which is odd. Maybe my scalp is sunburned and it isn't chemo head. I don't think I've lost any hair on the sides and back. Just on top.
I saw that you are taking tamoxifen or about to. Do you know why since you are triple negative? I'm just curious. Not questioning your doctor at all.
Ugh these hot flashes. I thought they were getting better...
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well I'm technically 20 and 10 % positive ER and PR. But in cancer world it's so low it's counted at negative. I'm also supposed to take Lupron shots to suppress ovaries, but I got really scared of the side effects and cancelled my shot, Iguess my mo didn't care because I never heard from him about it.
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Hair chopped and it feels so good!!! crazy different hair lengths, but it gives it body:) Hi my hair with an Aveda hair mask today and it is less troll-y in texture, too:)
I may be shy of my 12 weeks PFC, but couldn't hold back any more.
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I finished # 11 Taxol yesterday. Only one more to go. Hair shedding and they are uncut mess.I am going today to Sephora to pick something for thinning eyebrows...I think they should have pencils that will make them darker.Night sweats are killers. I am so sick and tiered of cold, hot and waking up every 15 min from it. The only time I can sleep is only when I take Xanax. I don't want to get addicted to it, so I only do it a few times a week.My MO doesn't let me take supplements or anything else now, only vitamin D. I still have Herceptin to do for next 9 month and whatever else he will give me. Do the hot flashes ever stop? What's the remedy from it?
. I must tell you ,last 2 hrs of cold capping yesterday was torture . The worst part for me not cold but all those straps we put under chin. And we do one extra ( our invention) to keep cap right.it's total of 4 straps we use.Here picture of me I made for my friend wher I am right before putting cold cap in a waiting room all in panty liners..People were steering at me...Now even my husband using term labatomy;)
And here my weekly fan Snapchat picture, complimentary of my son..
Btw, someone said they bruise easy. I am to! I get scratches and cuts so easy now. And also pimples....like a teenager. Hate it!
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Zinny - love the cut! It is super cute!! I am thinking I will have to do something similar when this last shed slows down. Just to get all of the pieces parts to look right together
Hoping the AC shedding slows down by next week, at this rate I will have a lot of bare patches if it keeps up.
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Zinny
You look great. Haircut is a winner but I'm super happy to see your eyebrows and eyelashes...they look really good now and so quickly. I don't think anyone realizes what a difference that can make in how one looks overall. Except all of us. Keep the photos coming as incentive for us still in the trenches. I'm halfway through Taxol now.
Best
ILoveArt
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Hi! I just wanted to report that I am 34 days post my first treatment of Taxotere, Herceptin and Perjeta and I have had very minimal hair loss. I am soooo excited!! This is my second go around so I did not want to lose my hair again! FYI...i lost my hair 16 days post first treatment last time. I have my 3rd treatment next week and will be half way done! I am using Wen shampoo/conditioner in one, fragrance free product by boss gave me....I really like it. I only wash my hair twice a week. It seems to be working!! Yay:))
Take care,
Kathy
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Hi Kthielen just would like to know why did your MO and head nurse say your hair will fall out? Were you using cold caps and they assumed it wilts happen anyway ? Thanks
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Hi All:
I'm gaining so much insight from everyone's posts. Thank you all for great info and sharing your experiences.
I Washed my hair with FAST shampoo and used a little of the conditioner on Monday. I cannot believe how good my hair feels. I had been using Shea Moisture coconut water weightless shampoo, but I think I like FAST better.
My 6th tx is tomorrow. I was changed from Taxol to Abraxane last week. The nice thing about Abraxane is no pre-infusion meds; i.e. No steroids. I'm happy to be at my mid point with not a lot of loss, although this week the shedding was a bit more than last week. Here are my pix:
This is how I normally look.
These are today.
My hair feels healthier after using FAST. Before I used it my hair felt so dry and looked dull and brittle. I think it looks better now.
I hope it helps the hairs I lost grow back faster. I know I will continue shedding. I wish I had started using this shampoo sooner. I had Ordered it and had it before treatment started but I was afraid to use it. It doesn't have any sulfites or parabens soIDK why I didn't just start using it.
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Are you using penguin caps or another type? My treatment is staring next week and my onco dr didn't seem like it would work. He said a patient couldn't stand the headache.
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T
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Glm, your Hair look great. I am tempted to order FAST . is it approved product by cold cap company?
Meow, I was told by my MO and head nurse it works. I guess because they seen worst results of cold caps. It's pretty new thing. Plus As cold caps company says it works better with Taxol then some other regiments. Through my 11 sessions of Taxol I only seen one more person doing Pinguin C C and yesterday I noticed someone leaving in ACC.
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Meow0369I'm using Penguin Cold caps. Not all oncologists are on board. Truthfully, if you use them the first 7-8 minutes are the hardest. At least for me anyway. I get very cold after ther first 3 and I take an electric blanket with me. It's my best friend! The middle are ok, the last hour can be difficult for no ther reason than I just want it over. Talk to the people at Penguin. I found them very informative and helpful. Also scan this thread for great insight. Good luck!!
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I agree first one is more difficult. But for me worst last 2 hrs. I think because all meds stop working. I usually take 2 taylonols about 40 min before capping.plus Xanax and premed benadryl that wears off after like an hr after chemo. but I still very sleepy all the time and it is really helps with capping. I also use ice on nails and feet during chemo and 15 min after. Its recommendation of my MO. It is really f..g cold during that time... I am all shaken. And Sloan doesn't let use electric blankets but they bring me 2 warm blankets of I ask.
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i don't know if FAST is approved by Penguin. I discovered it when researching shampoos without sulfitetes and . Parabens. The info I received from penguin appeared to indicate that was the only restriction. At first I used baby shampoo and that just didn't get my hair clean. Then I used the She Moistur and that seemed to get my hair cleaner, but it was brittle and dull looking. I have used Bumble Bumble to cover my roots for my don's graduation and his party. I haven't used it in several weeks. I did find sone brush on root concealer at CVS last week, which I may use, if I ever feel good enoughto go to work
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I'm being treated at Sloan. My treatments are in Commack, NY. They are letting me use the electric blanket.Where are you having treatment?
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Sloan in the city. 66street. No blankets there. Other then that I think they very understanding and helpfull with cold caps.
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it may just be that the facility in Commack is newer. Can I ask who your surgeon was?
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ladies due to some associated reasons I may have an opportunity to speak to Frank Fonda founder of penguin cold caps . While the discussion is on other topics I may be able to sneak in a few burning questions . Please make sure not covered on Pcc website/ previously . Please let me know if you have any and I will try my best .
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Victoryak, you're gorgeous!
Thanks to whoever posted that haircut video. I just had my last chemo yesterday, woo hoo! Happy to be sending the caps back tomorrow.
I ended up with a fairly thin crown (Toppik and generous bystanders very necessary). I also have numerous bald spots around but covered by long hair hanging down. Some days definitely better than others. Very much looking forward to new growth soon. My legs are starting to feel more stubbly, so maybe that's a good sign
I did notice my eyebrows had thinned after I realized that was starting to make me look weird! (Weirder than usual!) I'd never had to augment my very thick brows before, so it was an education about how important they are to framing up our faces. So far I've just used an eyebrow pencil to fill in the thin spots and unify the shape. Lashes are probably thinner, so bought a newby false eyelash kit but haven't had to resort to it yet.
Have SOOOOOO appreciated hearing your stories and seeing your photos and receiving your tips through all this. I know of no one else in my town who's done this, and my MO and nurse navigator were not supportive at all. So your all of your support and knowledge sharing have made all the difference in making this experience so much more positive and less lonely than it would otherwise have been. Thank you all!
But yes, what the HECK with these hot flashes? Much worse for me on rounds 3 & 4 -- hoping my ovaries can bounce back and get this silliness under control! Anyone found anything to help?
Otherwise, will continue to follow along to see how folks continue to do... I'm trying to wait until September for a haircut; will see how that goes.
Hugs to everyone --
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SatCat, congratulation on finishing chemo!
I found a remedy for night hot flash- it's called Xanax.lol. I took it tonight before going to bed and slept well whole night. Well , of couse it's not everyday solutiin, I don't want to take it every day so not to get addicted but it was really nice to get a good sleep for a change!
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Why do you think washing hair makes more fall out?
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You all look wonderful in your photos! I'm crossing my fingers you all make it to the end with the hair you were hoping for!
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