Cold Caps Users Past and Present, to Save Hair
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Bheg79 - my part filled in very quickly. It was there one day, and gone the next. Everyone commented about how thick my hair looked within two to three months. I worked a modified schedule throughout (I teach) and the kids/parents didn't even know I was undergoing treatment because my hair thinned, but never fell out.
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2018Summer, both my oncologist and dermatologist gave the ok for me to take biotin supplement after chemo. I think it has really helped with regrowth. The downside is that it impacts all hair regrowth, which means shaving legs more often, along with lots more facial peach fuzz
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@maggie2- yes I am taking biotin too but I didn't think about the regrowth everywhere else. For now I'll deal with that, but thanks for the advice!
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By far, I think the worst thing about capping so far has not been knowing how much hair I’ll lose, and when. At times, it’s given me considerable stress and anxiety (which I know is also bad for my hair!). There have been moments when I have been much more stressed about my hair, than even my cancer. And times when I’ve thought, “Ugh, I wish I’d just made the decision to lose my hair so I could stop fretting about it.”
But a big part of me still wants to keep my hair, so I keep continuing, and hoping.
I’m eight days past Round 2/6 (so well beyond Day 21 of Round 1) and my shedding is only getting worse every day. My hair is dry, my scalp is dry, and all around, it kind of sucks on the hair front. Bought a topper from Hidden Crown just in case. Hoping I won’t need a full wig! Hoping there’s a light (and hair!)at the end of this.
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MtKushmore - I totally agree with you & completely understand what you are saying - keep capping though - I’ll have my last TCH on oct. 22 and I still have hair - yes it has thinned out a lot and yes I have a very thin area on the top of my head but hey I still have hair and for that I am grateful - I hate brushing and washing my hair I find it depressing - I shed everyday but I did find the shedding slowed down by round 3. I’m just crossing my fingers that the thin area on top fills in quickly and the rest of my hair thickens up after this.
Good luck to you and keep us posted
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On second look, I think I actually did lose some eyebrows, but only because I see some growing in.
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Thanks Bheg79! These cold capping threads give me hope!! Even when hair wash days don't, haha.
Congrats on approaching your last infusion!!!!
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Another member posted this back in July and it really summed up my feelings as I went through cold capping. As I've said before, I didn't have the success with capping that so many have, but I still am very glad that I continued with the process. I hope this post will be helpful to some of you that are struggling right now. Thanks to 2catsinthyard for so eloquently expressing her feelings.
"About the shedding-the 'big shed' is definitely the worst and it takes a bigger girl than me (who almost never cries about anything, even my diagnosis) to not cry in the shower on that first shower shed day. So I allowed myself that boo hoo moment, determined that it will be what it will be, and moved on. It's hard to explain, just like it's hard to explain labor, to someone who hasn't gone through it, but for me it was a series of diminishing expectations during the six cycles of chemo. First it was "I am going to keep my hair with cold capping", to "I am going to lose some, but only 10-20% of my hair to chemo", to the big shed shower sobbing weekend of "Oh God, all of my hair is going to fall out", to "Well, it's going to be how it's going to be-wait and see", to "OK major bald spot-rock the combover/barrette at crown", to "Geez, how much hair can a person lose before they look like they have no hair", to "Made it through, still have hair, now it can start growing back & I don't have to start from scratch". There are varying returns on cold capping, but overall I get the sense for most of us it is ultimately worthwhile."
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I hate to laugh given the topic we are discussing, buy I have to admit I did. Thank you @Maggie2 for reposting and thank you @2catsintheyard. Your description of the emotional roller coaster is great and totally right on. Thanks for the encouragement. Everyday that I can feel a little more normal and not remind myself of this sickness is a bonus and for now that it what the cold caps are doing for me. I also do hear alot about how much faster the hair grows back when you are done, so I will just continue with my 1 day at time attitude and your quotes running through my head
Thank you!!
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Hi there! I thought I'd add my Paxman cold cap experience thus far. I've had 6 weekly taxols so far, and am on day 35. So, I'm 50% through my treatments... 6 more to go.
So far so great. (But I will not rest on my laurels as I know this can change at any moment!). So far, I've lost LESS hair than I did before all this started...so I'd say 0% loss so far. !!! (I used to rake thru my very thick hair without a care in the world. Now I baby it like crazy.) It goes around 4" past my shoulders.
I have been taking Biotin daily since a week before I started any of this.
I rinse my hair the day after treatment, then wash 3 days after (with the paxman shampoo/conditioner), and that's it. Always with cold water. I comb out gently with a wide-tooth comb before rinse or washing showers. Those are the only times I comb through - before rinse, and before wash. Twice a week. I grip my hair at the scalp and comb out the ends to avoid pulling. I have NOT used the brush thing that came with the kit. My hair is way too thick for that thing!
After the 3rd treatment I started also wrapping the outer cap with an ace bandage to make tighter, as I learned from a girl I met there doing same. She was on treatment 9 with a full head of hair, so…. yeah. I was worried I didn't have things tight enough for my first two, but time will tell I guess.
The ONLY cold capping rule I break is that I do scrunch product into the ends of my hair as I have very frizzy (half-jewish) hair. With product it's a little more curly than frizzy.
I am also doing satin pillowcases, and thanks to the girl with the ace bandage tip, I also now wear a hair net at night to avoid extra tangling.
I ordered that EES stuff for brows. Hasn't been delivered yet. Got an Rx for latisse from my dr., but I keep reading it doesn't work so I haven't filled it… I bought some revitalash, but haven't started using it yet. Will tonight, I think. I may just teach myself how to do false eyelashes when that time comes.
It looks like my nose hairs are gone. I still have arm hairs, brows, lashes, pubes.. I haven't had to shave my armpits or legs for well over a week tho, which is a huge change as I am pretty hairy and things grow fast and I have to shave every single day normally.
Anyway, that's my experience so far. I'm sure I'll report back if things change!
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2018summersuck, glad you found it helpful. Finding some humor throughout this process has been very helpful for me too.
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The ends of my hair tangle easily and I've been very careful when untangling them but it might be one reasons I have lost so much hair. I was going to braid my hair but it is fine and smooth enough that it doesn't stay in braids well and the strays that escaped would tangle.
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Thanks for the encouragement, everyone! I take solace knowing that a lot of gals went through the, “At this rate I'll be bald!" phase but have all made it to the other side, haha. I'll be relieved when I get my topper, so I have a Plan B in case my bangs suddenly abandon me.
You know the scene in Mean Girls where Regina just ignores the cut out holes in her shirt? Maybe I just need to make bald spots the new hot thing. "What? You mean you haven't heard? ALL the cool kids are rocking the patchy bald spots. It's totally fetch."
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@MtKushmore- you are too funny!! I love that idea
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getting my prosthetic wig today. No more cold caps for me for the rest of the treatments. Feeling two ways about it. Now I won’t have to deal with trying to salvage whatever hair I have, if it would’ve lasted. But now all my own hair will be gone and I’ll be wearing someone else’s hair.
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MtKushmore, great idea! Thanks for the laugh.
Nisha, hope your wig shopping went well for you. Having made your decision regarding cold capping, maybe now you’ll feel less anxiety about the hair situation
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HI
Saw this offer and hope it helps someone but wanted to ask you about these products. Did you use these often? Can you tell me your experience with this, any advice?
Thanks
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ladies, I m done with chemo TC and used Paxman cold capps- was able to keep 70% of my hair . I will put pics on special thread . Of course I had done bumps/ developed Matts after second chemo and didn’t wash hair after treatment, now I have a bald spot there but it’s groeing back a bit . I hide it with my hair
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here is my hair
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they thinned but I still have them
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Bostoniangal25 - congrats on being done! Your hair looks great - I’m glad to here your bald spot is starting to fill in already - I have one more round oct. 22 and still have about 70% of my hair but I do have a large very thin area on top of my head so im hoping it too will fill in quickly.
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bostonianngal25, your hair is beautiful. You really had great success with cold caps!
I’m posting pictures of before chemo and then 3 months post chemo: before I went to the hair salon and my new short, colored pixie. I thought it may be helpful for others that are struggling with major hair loss, even with cold capping. I would still endorse cold capping, as I have hair and I think it’s growing faster. Sorry if these pics end up all wonky. I gave up on trying to edit.
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Bheg 79- Thsnks, my hair thinner than before , on sides where ears I have bald spot as well, but it will grow back!!!i used Paxman caps and you?
Maggie2- your hair looks fantastic!! I have what you have on picture#2 thinner hair but it still there! What did you use for cold caps?
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Maggie2 - thank you for the pictures and your new hair cut and color looks wonderful!! Congratulations. I am so happy for you and taking some steps to moving forward and hopefully some happier times!
I can't wait to be where you are
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Bostoniangal25 - I am using paxman as well - I feel like maybe I didn’t get a great fit on the top of my head where I have the very thin area but it will grow back - I’m just hoping not to lose too much more after my last round on Monday - fingers crossed! My lashes did not make it and my eyebrows are prob not going to either but I hear they grow back pretty fast
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@Bostoniangal, your hair looks great! And congrats on being done!!!
@Maggie2– Love that cut and color! It looks like it has a lot of bounce and shine
I’m a week from #3/6. Still shedding like a beast! Also I’ve got raging dandruff that never seems to wash off! Anyone have any dandruff tips during this process
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Thank you all for your kind words. I used Penguin Caps, as there are no facilities in the entire state that even offer Paxman or Dignicaps. All the new growth came in "chemo white" (Yes, it's a thing), which made my original hair look even thinner. When both the MO and dermatologist said I could color at 3 months, I jumped at the chance. I know Penguin says to wait for 9 months, but I needed to dye the gray and cut off all the damage. 2018Summer, you are correct that it has helped me feel as if I'm moving forward. I also lost every brow and lash, but they do grow back very quickly.
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MtKushmore, I had minor dandruff during chemo but about 2 weeks PFC, it really kicked in. It lasted for about a month, but only after shampooing would it seem to be worse. I finally started using a gentle clarifying shampoo, which maybe helped. Back in the summer, there was a discussion on this thread about some ladies having to go to the dermatologist and it ended up being seborrheic dermatitis. Maybe ask about it at your next infusion.
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not sure any hair cleaning product can stimulate growth-- lot of marketing going on there-- growth comes from within not from superficial cleaners and such-main thing is to protect what you have and be very gentle with your hair-I used non sulfate shampoo and gently tousled hair -no scrubbing--every 5 days-followed by spritzing with Johnsons baby detangler and gently combing with a wooden large tooth comb-did sleep with silk cover on pillow to help with pulling during the nite--I kept 80 percent during chemo and lost maybe another 5 percent from shedding that continued for 5 months-didnt color hair for 5 months either.
am now entering 9th month on Letrozole and have noticed mild shedding past 3 months-first with shampooing and last couple weeks have about 12-20 strands a day when i look for it-not enough to be getting upset---yet--all I read says the aromatase inhibitors can cause this due to lowered estrogen levels similar to normal aging effects on hair--I am 69-hoping it will level--off=hugs to all,Kaylie
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Thanks Maggie2! I think the chemo is just messing with all my skin in general. My face is sebum-riffic (and round 1 gifted me with a lovely breakout), while everything from the neck down is just dry, dry, dry. So fun! 2.5 more months.... 2.5 more months...
My shedding has kind of just held even since the wash after #2. Hoping it slows down. Surely it must slow down. It's becoming tiresome throwing away the dangling hairs that seem to just line up to fall off my head, like they're about to go on a county fair ride. Aren't you bored of shedding yet, hair??? Somehow it still looks like I have hair, even though I'm throwing them away by the handful, but I'm taking things one day at a time.
In case anyone's curious, I got my topper in the mail! It was $450 from Hidden Crown, made with real human hair. It was really easy to retrain the hairs to part where I wanted them to, and to cut bangs, even. I'm hoping I won't have to use it, but I'm glad to have a backup. And it was a lot cheaper than the wig shop I originally went to, whose toppers started at $1k. The proprietor of the shop was really sweet and lovely, and mostly helps cancer patients, but since I'm already paying a lot for the cold caps... Also despite me telling her I wanted her to be gentle because I was cold-capping, and despite her telling me she was familiar with them, she still kind of man-handled my hair when she was showing me some wigs, so I haven't really wanted to go back. And she was being really insistent on wanting to cut my hair super short if I got a wig (the original reason I went, because I was feeling anxious about the caps), so I felt kind of deflated that she wasn't really listening to what I wanted.
Did anyone try to take gentle iron to slow the shedding? Did it work? I haven't asked my MO about it yet; I don't really want to admit to him it's for vanity reasons. My hemoglobin and RBC counts are always just sliiiiightly under the [normal min-max] ranges, but he's never mentioned it, so I guess he's not concerned. So, again, mostly vanity reasons.
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