Cold Caps Users Past and Present, to Save Hair
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Hi Poppy, I waited until shedding stopped, which took a full 8 months for me I’m 10 months now and back to warm water and color, but still use only a cool hair dryer. Hair had filled in well, but scalp is still tender in some areas.
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Poppy Spruce, go gradually on changes to your hair care routine. I think I went 2 months PFC before washing my hair in the shower with warm water. Blow drying at least 3 mos for me. I gauged both of those by how fragile my hair felt. During chemo & right after, i felt like every time I touched my hair, more would come out. I still think I shed a bit more than normal (5 mos PFC), but it’s gotten so much better.
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Poppy_Spruce I kept treating my hair gently for a few weeks PFC. I kept feeling that tingling sensation (which, during chemo, meant that my hair was trying to fall out) for maybe 4-6 more weeks. Maybe a month after finishing chemo, I started treating my hair pretty normally, but still not a lot of pulling around a brush or high heat when blow drying. Maybe 3 months after chemo, I had new hair everywhere, filling in, so now that I'm 6 months PFC, it's normal and thick again.
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hi everyone,
I just finished my 4th and last infusion of taxotere/cytoxin yesterday. I cold capped with Paxman and was able to save a little more than half my hair. It's thinned out a lot more towards my crown. I found that I lost my hair in phases. About 14-28 days after each infusion I felt my hair fell out the most.
Now that I'm finished with chemo I'm anticipating when my hair will start growing. Everything's I read says about 6-8 weeks I should start seeing growth, but isn't that for people that's lost all their hair? I feel like my hair will continue to fall all out for a few more weeks...
So I have some questions about your experience:
1. When did you hair stop falling out?
2. When did you find hair regrow this?
3. What did you do with the awkward regrowth with your regular length hair that didn't fall out?
4. What products/supplements l did you use to help with regrowth and when did you start taking it?
5. I'm still following all the Paxman instructions with being gentle, limiting washing and brushing. She can start washing regularly?
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Nana, I cold capped with Dignicap and had a pretty good result. From reading in this thread and others about the experiences of other cold cappers, my impression is that there is considerable variability in how much hair is lost after chemo ends and when the new hair starts to come in. My own experience was that my last chemo infusion was on August 20, and new hair was definitely growing by the end of October, which was 10 weeks after the last chemo. I think probably it started to come in a week or two before that, but I found it surprisingly difficult to see new little hairs among the existing hairs. I would see something that I thought was a new hair, but if I turned my head even a millimeter, it disappeared into the existing hair. Very frustrating! But by the end of October, numerous little hairs were poking up from among the existing hairs, so I knew it was coming in. At about the same time, I noticed that the hair loss after brushing or shampooing was back to normal. It had been gradually slowing down since the end of chemo.
I didn't do anything special to promote regrowth, but I did continue to use a gentle shampoo (from L'Oreal's "Ever" collection, which is supposed to be paraben-free and so forth), I limited shampooing until the hair loss had slowed down a bit, and I was careful to treat the hair gently when combing it out after shampooing. It's shoulder length, so it can get tangled. Other than that, I didn't give it any special treatment either during or after chemo. In fact, I did some things you're not supposed to do, such as wearing a helmet when I was with my horse. That was during the summer and early fall, when it was hot, so I got my head hot, which is supposed to be a no-no. I did feel a little guilty about that, but it was only an hour or two at a time, and my hair didn't seem to mind. As for the awkward regrowth, that turned out not to be a problem for me. At first it did look a little odd to have short hair sprouting up from the longer hair, but I decided it was an opportunity to try out a new look, so I told all my friends that my fabulous new "punk" look is a trendy new style that only a select group can pull off. I think it did look kind of cute, and I'm a little sad that the new hair is now getting long enough to blend in smoothly with the longer hair. Maybe it's time for me to get a little more experimental with my hairstyle? But we were talking about you. If you don't want to embrace the punk look, you could consult a hairstylist about your options for blending the new with the old. This could be an opportunity for you to try something new, too.
Good luck!
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hi..I cold capped with penguin thru 4rounds of TC and saved 80 percent.and lost another 5 percent thru 5 moreemonths of mild shedding..i did lose hair all around my hairline but didnt realize till it started growing back a few weeks pfc..so very happy with my results..I started mild shedding..again..5months into being on femara/letrozole and that has continued.am 16months in now..shedding mostly when shampooed so only wash every 5/6 days..I stopped having my long hair layer cut and have only blunt cut trims now every few months
.I can deal with this side effect of antihormonal meds and is an all over shedding..no bald spots .no widened part and no.one can notice..hope this helps..hang in there..a day at atime..hugs, Kaylie
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Is anyone watching The Village? One of the main characters is going through chemo, and they showed her cold capping at the start of this week's show! I think that's the first time I've seen it addressed on a TV show. A Million Little Things has a character with breast cancer, but she didn't cold cap.
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The good, the bad and the ugly: my cold capping journey
Hi everyone,
Although I live in Australia, we follow similar chemo regimes and use the same brand cold caps, so I thought I will share my journey with you now that I am 2.5 months after last chemo treatment.
I had 4 cycles of TC (20/11/18 to 23/01/19).
I used the Paxman cold calp. The extra small cap was too tight, so I wore inner small which moved a bit and outer small to try to keep it in place. I have lost about 50% of my hair (and I have heaps to start with) mostly in my crown, probably because the cap was a bit big for me. All the usual instructions to preserve hair were followed - washes once a week with coldish water and mild shampoo, no hairdryer, gentle brushing, silk pillowcase...
They tell you that you are going to lose hair, but I don't think that I was mentally prepared to deal with all the shedding and the clamps of hair in the brush. At face value the treatment has been successful, I only had to wear head scarfs for a couple of months and by now not too many people will tell that I have lost hair.
Was it a painful experience?, Yes
Was it worthy?, Absolutely
Would I do it again?, No, I wouldn't, especially if I required a longer chemo treatment. Chemotherapy and all the decisions that you need to take when fighting cancer is a stressful enough experience. Worrying on whether the caps are working and constantly cleaning up hairs adds another layer of stress that in hindsight I didn't need. Half way through the treatment I had a big bold spot at the top so I started wearing head scarfs and I grew to love them. Australia is a very relaxed country fashion wise, no one looks at you twice with your fashion choices so I never felt that people were wondering if I was sick.
I have put a photo collage together but I am having trouble attaching it. I'll try in a separate post
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Hi all,
I’m using Chemo Cold Caps for my 6 rounds of TCHP which are every 3 weeks. I’ve finished 2 rounds & go in for round 3 on 4/24. I started shedding about 1 week after round 2. It got a little heavy so I waited another week in between washing my hair & that seemed to help. I’m keeping my fingers crossed that I can get through this with the majority of my hair still on my head.
I hope everyone had a good Easter weekend. Good Luck to all still going through treatment.
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HI.
Today was my first chemo treatment. Taxol/Herceptin. I started with the Paxman Cool Cap. I'm actually helping the hospital I go to with videos about the cool cap as it is just making it's way down South. I feel like we had it very tight and close to my scalp. The headband they sent with it hurt like hell. It hurt my ears. I think I'm going to try something else. I usually get my roots done every 5-6 weeks. Any tips on that and what you used would be great. Did you use their shampoo/conditioner? I have naturally wavy hair and cut it short too....I plan on washing and air drying. Just didn't know how often to wash.
This is my second time with breast cancer. In 2016 I had DCIS stage 0...lumpectomy and radiation. I have two small children, 2nd and 3 rd grade and want to look as normal as possible this summer....
XOXO
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Hi Paris67 - I did use Paxman's shampoo and conditioner. I chose to wash my hair every 3 weeks. Just Day 3 after infusion, to clear out icky chemo that comes out through pores everywhere, and then maybe one more time before next infusion. I was so paranoid that washing it would make more fall out, that I just went with Not Clean hair. I used cute hair bands and combs. At night, I often wore a 'snood' to keep hair off the pillow. I did shed a bit. I got completely used to Not Clean hair after a week or two. In fact, no one could tell. I didn't use hair dryers except about one time for a big occasion (DD's wedding!), and I did NOT color my hair. In fact, I had just gone 'natural' a few months before chemo, so no dyeing any more for me. I had EXCELLENT success with Paxman. Absolutely no one could tell that my hair was a bit thinner. Read my other posts through this thread for more of my good experience with Cold Capping.
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Hi. I was posting on this forum 2 years ago when I used elasto-gel caps. I have Serous Uterine Cancer stage 3 but this is the only cold cap group! I am once again cold-capping due to a recurrence, met to lung. When I used the caps (I own, glad I kept them) I did really well but my hair was short and thinner than now. Two years ago I had gone through 3 infusions then a break for rads and then used caps when chemo resumed cause I didn't want to lose the hair that grew back. Now with thicker longer hair I have lost sooo much hair after my first of 6 infusions and am so distressed seeing all that hair. I feel like I have lost 1/2 already but my husband says he sees no difference! Anyway, am reading here for support and information and thank you!
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I hear ya, girlfriend!! Two rounds of AC and 12 of Taxol and I feel like Trump catching an updraft coming down the stairs of Air Force One! But most people tell me they’d never know if they didn’t know. I’m just over 2 weeks PFC, and I still have shedding, but I also still have hair! I’m hoping it quits when I hit the one month mark. Just remember, that we are more sensitive than usual to our shedding, and what cryotherapy does is slow down and protect the young follicles. Older follicles will continue to shed. My hair is definitely not what it was, but the caps DID work in that I haven’t needed my wigs or hats.
I’m still washing with cold water and only every 3-4 days. I’ve been taking biotin and using a growth stimulator on my scalp to get things going.
On the downside, my eyebrows...which were doing just fine, have been giving up the ghost, and I’m starting to look like Charlize Theron in Monster!
Keep the faith!!
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Poppy....LOL Loving your stories with a twist of humor. This is such a large cloud that I am very anxious to lift. Starting Chemo on May 9th and will be using the Chemo Cold Caps. I guess you can say I am going through a "trial run" now, where I am paying a bit more attention with how to care for my hair. Hoping to keep my normal to continue with work and just basic activities. I am taking Biotin, as well, but have always taken the Hair, Skin & Nails vitamin. I did buy straight Biotin now, though.
Who did everyone use for the dry ice provider?
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Hi all -
New here, cold capping with Arctic, I had my first chemo (TC) 18 days ago and will have my second on Thursday 5/2. I have been washing only every three days as recommended using a sulfate-free, paraben-free baby shampoo, very gentle "scrubbing" ( as in, barely touching my scalp), no hair dryer, minimal combing or fussing, satin pillowcase, basically following the recommendations. Today I am a bit panicked, because I know hair will shed, but I have been averaging about 40 hair strands per washing (yes, I count them -- I acknowledge that may be a bit obsessive) until Day 15 post-chemo, when I lost 60 strands, and then tonight -- I stopped counting at 300 strands!!! And I know those are just the ones i found on my hands and in the comb. This has really shaken me up -- what a shock to apply the shampoo, take my hands away, and find them covered with hair!!! I know we supposedly have about 100,000 strands of hair on our heads (I hope that is true for 58-year-olds!) and that 300 is not much relative to that, and that I can expect to lose at least 20%, but I am wondering for those who feel their cold capping is successful, did you experience that much loss at one time? Can this be considered "normal" if one hopes to have a successful run? Just a tad bit panicky here . . .
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JoAnnsLife: for dry ice I use Kroger grocery store for the slabs & a place called Roberts Oxygen for the pellet. Roberts is a welding supply place here in Virginia.
DebH1960: I’ve done 3 out of 6 chemos and have gotten a couple of large handfuls of hair out with washing. I still have plenty of hair on my head, but seeing all that hair in the shower does make it feel like you’re losing it. Try shampooing less freq, like once a week. Focus on the hair on your head, not what’s tangled up in your fingers when you wash. We will get through this
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I had excellent success with Cold Capping. I never washed my hair---maybe once every three weeks. Obviously, it did not look super fluffy and styled, but it was on my head, so I compromised and went around for all those months with kind-of-greasy hair. No one noticed, and my hair didn't look horrible, just not fluffy. I was super gentle with it. It seemed to me that I was shedding huge amounts, and I was, but the 'look' of my head was a whole head of hair. I wore a "snood" to bed to not shed all over the pillow.
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Thanks, Adhoney, I have been reading over older posts and am also thinking I simply must go with less washing -- though once every three days is hard to tolerate as it is! I hate the idea of going to the office every day with my hair looking so unkempt, but clearly I must steel myself for that. I may need to just wash on Mondays and to work from home at the end of each week -- and I am glad to have that option! -- but right now I am wondering when I will regain my shaken equilibrium. Thanks for the reminder to focus on what remains, not on what is gone, I will try to do that, its good advice.
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Welcome, DebH1960! We're so glad that you've joined our community, and we hope you find this to be a source of support as you continue on your treatment and cold capping journey! Lots of great info here, and plenty of support (as you've already seen
). We look forward to seeing you on the boards!The Mods
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My son’s wedding at 10 months PFC. I used penguin cold caps. I continued shedding for a solid 8 months. I got a bob type cut to make it look thicker, and I flat iron my chemo curls. I’m pretty close to my old self hair-wise. Hang in there cappers. Serious pain in the #%*, but worth it.
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sorry...here is photo
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Rwns - You look FABULOUS!!! And congratulations on your son's marriage!
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Thank you DebH 💕
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Day 17 post FIRST chemo of 6 and I must have lost 50% of my hair! I am really so disappointed. I did this almost three years ago and lost so little hair. It was much shorter and thinner then. I have extremely thick hair so thinking all the extra hair insulated my scalp. Am still holding out that now with way thinner hair cold capping will be much more effective. In any case I got my wig out. This is sooo hard. Bad enough to have a recurrence but think oh well I won’t lose my hair but then. Anyone lose so much after the first infusion? Thanks.0
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Janetsam-yes, I lost a lot after my first infusion. I got away with careful pin placement and some colored powder until my part started filling in. Are you on a different chemo this time?
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Rwns same carbo/taxol as before. Think the difference might have to do with how thick my hair is (was) compared to last time. I thought we did better capping this time too along with having 5 caps instead of four. This is so distressing. My scalp got sensitive by day 9 or 10, much earlier than last time. It’s day 20, scalp is still a bit sensitive in a few spots still. Right now there are no bald spots, just thin areas. This pic is only about half of what fell out and I have short hair! When I look around at women in the stores my hair right now looks about like many out there. I just pray it stops. It adds so much to the stress. I am hoping with less hair insulating my scalp cold caps work next infusions. Did your part start to fill in before you were post chemo? Thanks so much
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RWNS - you look gorgeous! And I love your dress!! My daughter is getting married on June 15 and I'm so thankful to have hair. Not as much as I had before, but I kind of like the shorter style. This photo was just after I had a trial run for makeup for the wedding.
janetsam - I had very thick hair before chemo (4 AC & 12 Taxol) and lost probably 80%. I do think it was related to my thick hair insulating my scalp at the beginning. It was distressing to see my scalp and the large amount of hair lost during AC. But I did a very loose braid for the last 6 or so weeks of Taxol and that seemed to slow down some of the shed - I had a bad habit of running my hands through my hair. Also, the regrowth started about then. The cold capping helped mostly for me by protecting the hair follicles and letting the regrowth come in as normal hair and very fast. Good luck with your remaining Tx!
Kim
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Kdrake-Thank you! You look beautiful...amazing how we can rebound! Your lashes and brows look great...mine are still drawn in. Congrats, and enjoy the big day.
Janetsam-I think my part started to fill in right after my last chemo, but it was hard to see. Also, I continued to shed for quite awhile after. The way I could tell that my hair was filling in again was all the chemo curl, as I have always had stick straight hair. So every wacky curly hair that came in, I knew that was new growth. Looking back on it, might have even been before my last chemo. Also, I know what you mean about that sensitivity/pain. One thing I did that I think might have helped was I continued to put a bag of frozen peas on my head for a few hours after I got home in the evening. I don’t know what it did for the hair loss, but it sure helped with the pain… Maybe did both? One more thing is I took pics of my part every week just to get an objective idea about my loss and regrowth. Hugs to you...we all know how painful this is. When is next infusion?
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Thank you Kdrake. Your hair and makeup look really nice. Exciting to have your daughters wedding to look forward to and with hair! Hoping the cold caps on what is left will allow new growth to stick around. I remember 30 days post chemo shedding the tiny bit of new growth so hopefully it will fill in the thin area.
Thank you Rwns. My schedule is every 3 weeks and my next is Monday. Will have a total of 6 infusions. I mostly didn’t want to look like I am in chemo for my very very part time job but I may end up wearing a scarf. I don’t have a part that is thin yet. Bought some topix and pulled out my old partial wig. Not knowing where this is going with the hairis stressful.
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I just took the plunge and signed up for Penguin Cold Cap. I start chemo in 10 days. Fingers crossed this works enough to allow me to still feel like me, not bald me. I understand there will still be shedding and thinning.
So nice to meet you ladies! So many tips!
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