Cold Caps Users Past and Present, to Save Hair
Comments
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Elise,
It's possible you're just one of those who have a really dramatic shed at the beginning of treatment and then taper off. If you aren't losing hair in clumps, just thinning overall, most likely the caps are working. I would be willing to bet that a lot of other people ultimately lose the same amount of hair, only through more gradual shedding over a longer period of time. There are a few lucky ducks out there who hardly lost any hair at all, but they are probably well in the minority.
You have a lot more hair than you realize. Don't give up yet - from what I recall, most people see a reduction in shedding after the first and maybe second treatment. That's how it was with me anyway. My first TC treatment caused a lot of shedding. It was just so shocking, even though I had tried to be mentally prepared. I never even knew where my hair went - it just seemed to disappear. I didn't even have the "evidence" to put in a sandwich bag! I remember how discouraged and upsetting it was to notice the sudden loss of volume by the time the 2nd chemo rolled around. To make things worse, I had started losing some hair the months before chemo due to ongoing stress from separation/divorce. So I had a double whammy going on as far as shedding. And everything still came out ok! Thinner hair, yes, needing a wig or coverup, no.
Hope this gives you some reassurance.
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Thanks so much Wildflower - when did your hair start growing back, and did you fully recover the lost volume and thickness?
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Elise,
I think it got started around the 8 week mark, but I started noticing really visible regrowth around 10-12 weeks pfc. By regrowth I mean feeling stubble, tiny short hairs (1/2" or so) and seeing dark specks signaling follicle regrowth in my part and the thin spots.
My hair is still recovering, and it seems to be headed toward the original volume and thickness. I'm 10 months pfc, and it's growing back like crazy. It's still coming in! I can feel new "crew cut" stubble even now. The bangs came back first, and they are as thick as before. I have to get them cut every 3 - 4 weeks, just like before chemo. I have hair all different lengths all over my head. This makes sense, because during chemo and afterward, I was gradually shedding, so of course each hair is going to return in the order it fell out. The hair I lost from stress alopecia is also coming back, which makes me really happy, since that means all my follicles, even the stressed ones, are working again.
I'm regaining the original volume pretty fast. It's a little bit wavier than before which I kind of like, because my pre-chemo hair was fine and straight. If it keeps up this rate, I think I'll get most if not all of the volume back. One unexpected bonus - when my new/old hair needs washing, or reacts to humidity, I get the "beachy waves" look that women pay $ to acquire in a salon. Lol!
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Wildflower, I am SO glad to hear that!
One of my worries is that my shedded hair won't return (if I'm part of the 3-6 percent with permanent taxotere loss). This is why I'm going to continue with the caps just in case, but I'm feeling really skeptical about their effectiveness for me personally at this point. I scrolled through all the photos of others doing really well with them, and I have to say I'm very jealous!
For other newbies, I want to say - this thread is FULL of women who succeeded with PCC on TC - but it's possible also to be part of the 10-20 percent who don't. I may be proof of that, will find out within next few days I think
Trying to stay hopeful, but very scared and traumatized by all my shedding. 0 -
BBwithBC45,
When on Taxol your shedding started? it's seems different timing from other regiments. Did you say it was more toward the end?
Thank you!
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elise - hang in there!!!! I can understand why it would be so extra stressful for you, with your job depending on your hair. I hope the shedding slows down for you. I also LOVE my hair post chemo. I also get the "beachy waves" - much less so now that I am 4 years out and my hair is very long (weighs it down), but it definitely still has even more body than it ever had in my life (I have always had poker straight thin hair).
Here's to better hair post chemo and cold caps - even if it doesn't look so great during! There is a payoff when it is all said and done!
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Elise,
I totally understand your anxiety! Just hang in there and keep capping. I really wasn't able to relax and trust the process until just before my 3rd treatment. I had hair nightmares, continual anxiety, depression, the works. Bought not one, but 3 wigs, thinking I better have a backup (never used them). It helped me calm down when I was told "you should have definitely been bald by now" by my very kind chemo nurse. (My oncologist completely ignored that I still had my hair throughout my entire treatment, it was as if it didn't exist, pfft, we weren't a good fit anyway, and I have since changed oncs).
Remember:
(1) Just getting through the roller coaster of diagnosis and treatment is an accomplishment in itself. You're doing that. You can keep doing that.
(2) Just getting through the first big shed is an accomplishment in itself. Remember, the cold capping is only going to protect the young and middle-aged hair follicles. The old follicles that are near the end of their growth/rest cycle are the ones that fall out during the big shed. If you're not pulling out clumps, that's what you're seeing.
(3) Just following all those dang capping rules is an accomplishment in itself. You're doing wayyy better at that than I ever did, lol.
(4) You can do this. Really you can. Just do what's in front of you. Then do the next thing. That's what I did.
Big hugs, and I hope your treatment goes well today
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Good morning, cappers.
Like others, I was massively stressed daily with the amount of hair loss. I made it through without wig or topper. My regimen in 2014 was dose dense ACT over 16 weeks and I used penguin.
Hang in there. You'll be through it soon enough and for most of you with enough hair to get by.
Sending light and love and well wishes.
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Viktoryak, I never had a really big shed, it was very gradual and I felt like it picked up after I finished chemo.
From reading this board in the past I remember that Taxol ladies had a very high rate of success with cold capping. I know it's not easy, but try to relax, Taxol isn't as harsh on the hair as other regimens.
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BBwithBC45, thank you! I am trying to relax but still........
I have a wig on hold with wig place, I was just debating if I should convert it to a topper (jut to have my hair look nicer by clipping it on spacial occasions since now it is just a mess) or just in case I need a wig hold on not to covert it. My insurance will cover a wig (but of course not cold caps) therefore I am thinking .... and waiting
But thank you for encouraging. And hope we all succeed with cold cops. With taxol as you say it is probably easier on the hair but not easy on # of times i have to do cold caps, I have all together 12 times to do cold caps...6 already down.... 6 more to go...
best of luck to all of us!!!
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amyabs -- My mouth sores were awful and probably the worst side effect I had. I tried EVERYTHING -- baking soda, salt water, Magic Mouthwash, special toothpaste, special toothbrush, avoiding acidic things, and so many more. And then a nurse finally told me about a mouthwash and it was a MIRACLE. It's called Prevention Mouthwash for Oncology patients. Starting with chemo #4, I used it twice a day, and I had ZERO mouth sores. It was such a miracle for me. I could eat! Here is the link on Amazon. This one bottle got me through chemos 4-6. Good luck!
https://www.amazon.com/Prevention-Oncology-Mouth-R...*Version*=1&*entries*=0
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Viktoryak, I got a free wig from American Cancer Society, just in case.
Also, I put down-payment for a nicer wig with a place where I submitted the prescription from my MO, as my insurance would cover it too. The lady at the wig place told me to just come in when my hair starts falling out and then she would trim and fit the wig to my head and I would take care of the rest of the payment. Needless to say, I never had to go back to the wig place, I called and got my deposit back. I'm glad I didn't spend any money on a wig. The penguin cold caps and dry ice on 12 occasions was a lot of money already.
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I've been having dreams about my hair falling out in clumps. Waking up all freaked out:(
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Elise -- so sorry to hear about the professional impact of the hair loss. I am trying to focus on the hair that I still have, which is considerable, although it feels like hardly any because I was used to having so much. And it is _my_ hair, and "starter hair" for the full regrowth! Also, folks have said the caps help hair grow back more quickly too -- so that might be something to focus on too.
RE: Toppik, I learned the hard way that Amazon has the worst prices... Just got some on Ebay for a steal!
Again, anyone need any auburn Toppik? Just after I sprinkled it on the first time I realized the color was all wrong for me, so it's basically a new 12 g. bottle. Will send to anyone who can use!
Hang in there, everyone --
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BBwityBC45, exactly what i did. I put my deposit and prescription with nice wig place and a wig on hold. The wig is so beautiful and feels like my real hair... but i will only use it if I need it or will cut it to topper. Wig lady told me the same as for you just, come back when hair start falling...But it is so tempting to get some topper... now... so to took good... I think with short hair it is the worst... i have such a mess no style at all, my bangs curl up...omg ....but i guess i should be grateful i still have hair....
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Last taxotere! I screwed up on first cold cap not enough caps and ice so probably lost 80% on top and kept 40 - % on sides so I have been rocking the baseball caps and scarves. The little bangs and short hair in back dont get a second glance! Just hoping it all comes back!
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7of9,
Woo hoo! Congratulations on finishing your chemo! You look great! And the ball cap gives you a sporty, cute athletic look - you're totally right, I wouldn't give a second glance if you walked by. 😀
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I had my first cold capping day today with Penguin caps. It went very well, brought my heated blanket and warm socks and it was easier than expected. I wanted to ask about hair products. Does anyone have suggestions on a detangler? Also, did anyone use products? I know it's against the rules but I have naturally curly hair and it gets frizzy and crazy without any product. I usually blow dry and straight iron every day which I won't be doing!!
Susan do you use any products?
Thanks,
Kathy
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Hi! I also found that the caps were not as unbearably cold as I thought they might be! Used penguin system with my own dry ice in a cooler. The shedding started at day 17 and have a small bald patch behind my left ear where the cap must not have reached. Am into day 23 post first session of Docetaxel and ciclosfamide, did round 2 just 2 days ago and have full head of hair but still lots of shedding especially when run fingers through hair to make it more presentable. My penguin rep says the shedding stops - anyone can tell me when ? Have become a bit obsessed with my hair and that it will all fall out after all this effort!
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hi! Am hoping by now that the shedding has slowed down. I am on penguin caps too and started shedding at day 17 post first session but now at day 23 still have full set of hair with a small bald patch around my ear. Shedding still happening but I just put my hair in a loose clip so as not to touch it!!!!
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Day twenty post TC chemo #1 and my shed today was biggest ever - just when combing gently, not even washing.
40 percent of my hair is gone. When will this stop or slow down? My rep says as long as I don't have patches of bald spots, its working. Well, I don't have any right NOW but if the shedding continues at this rate I sure will!
I went from having full, fluffy, wavy mermaid hair to thin, scraggly strands. I started off with a lot of medium-to-thick hair, so I have no idea how this system could possibly work for those with sparse or fine hair in the beginning.
I am heartbroken. Because I'm on taxotere, my shedded hair might not even come back. If it does. it will take forever - at least 1.5 years - to become even with the sad remaining hair.
I almost wished I had refused chemo at this point. This is the worst I have felt since my diagnosis - even worse than when I had to wear diapers from the GI symptoms of my chemo.
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elise24601: I am on Taxotere/Cytoxan too and had my biggest shed days 15-21, it was scary and depressing. Those days I literally had hairs falling allover my arms and shoulders and I couldn´t let my toddler play with my hair which she loved to do. The worst shed for many people on here is after the first treatment and it WILL slow down.
I am now on Day 43 and the shedding has calmed down significantely, had my 3rd treatment yesterday and the doctors and nurses were impressed that I still had a full head of hair. I think we with thick hair shed more initially since the thick hair somewhat insulates the scalp and the follicle cooling becomes more effective during subsequent cycles with thinner hair.
I also used to work as a model and still care about my appearance but I feel really bad for you and understand your worry since you make a living on your looks. FYI, I wore clip-in extensions to many gigs after too short hair cuts. Its easier to fix thin hair than short hair with clip-ins. Hang in there sweetie, you will feel better in a few weeks when you see that the capping is working!
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Thanks so much for this. How much hair loss did you experience total so far?
I would love to use extensions but they don't seem good for my scalp while capping? Since they have to be attached, I imagine they would pull hair out,
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elise the shedding will diminish! you seem to be right in the middle of the horrible first shed, which for me finished around dat 34, after that the rest are not bad at all, you made it to day 21 so you will be ok. Also from what I've read in here the caps help regrowing hair faster and avoiding the taxotere no hair side effect, so take heart it will pass. i use to feel just like you and i cried a lot over my hair, now after having my last TC, i just cover the thinness with either toppik, scarves or on special occasions a wig topper that i clip on, i don't wear the topper every day because I'm afraid the clips will pull out hair, but i know that it will be helpful when i start to regrow hair and I want to somewhat hide all the different lengths
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Elise, I lost approximately 35% of my hair so far. Agreed with Cody mx, I wouldn't use clip-ins too often only if really necessary. Depending on how my hair looks PFCC I might use them later.
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Thanks Heidi, how many days from 1st chemo are you?
If I stop the heavy shedding now, I can probably handle it, but if this continues each day it will be bad news!
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Elise, I am 44 days post first chemo. I felt exactly like you during the big traumatic shed after the first treatment and feared it would continue in the same speed. I have saved the hairs I lost from every wash from right before chemo and after shed started and now the amount I lose are almost back to a normal shed. You have more hair than you think and even if you continue to shed a little bit it won´t be noticeable.
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Is there a way of searching these posts...I have many different questions about other people's capping. I'm 2 days before 3rd session of TC, still have mostly full coverage (bald spot on my crown, using Toppix), though my hair is thin, and very much troll-like - as has been aptly described by others. Is there a way to subject search - within the cold cap thread - rather that attempt to read 500 pages of input?. I'm using Arctic Cold Caps/Dry Ice, by the way.
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Hooray -I think i have stopped shedding!!! I am 7 weeks PFC
I dropped a bunch right after surgery, but it has really slowed down now!Victoryak- i had my hair gently trimmed two weeks ago,and cut my bangs several times through chemo, as well as a bunch of my hair when i couldn't deal with the lack of style as it kept growing and growing in spite of thinning….
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Before all this chemo nonsense, and after. Much less hair, but not bald. Suffering most from 1) terrible cut 2) lack of colour.
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zinny you look great!
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