Cold Caps Users Past and Present, to Save Hair
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SulaDog - I, along with a few others on this thread did Taxol/Herceptin. We all had wonderful results keeping mostly all of our hair. I didn't think I lost any but I see some little hairs sticking up now which must be new growth. You'll do great!
Curly - your hair looks great considering the treatment! As Warrior Woman said, your new growth will fill in quickly, I'm sure.
I'm about 8 weeks PFC and still look like I've aged 10 years. My radiation identification picture was so shocking to me. At first glance, I thought it was my 93 year old grandmother - gaunt, sallow, sunken eyes. Then I realized that it was a close up of me! I actually looked so bad that I didn't recognized myself. I hope to start bouncing back soon - maybe after radiation? Maybe after some good old Botox!
With that said, the radiology techs were completely stunned by my hair. At first they assumed that I didn't do chemo. Then I said I cold capped. Then a few days later I came in with my hair down and they said, "we have some questions - what is this cold cap? how does your hair look so good after chemo?" I explained it all. Then they told me that a lady that gets her radiation right after me was talking about my hair and was very teary because she didn't know keeping her hair was an option. My heart broke for her. I hope more women learn that keeping their hair is an option. Bald is not the only right of passage for breast cancer survivors.
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did you or any others here use Elastogel caps, I've heard about them on these boards. If my Writers Guild Insurance won't help with the penguin ones, I'm interested in a more economical alternative. Also if anyone knows how do the elastogel caps work? Same as the penguins?
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Daniella- Thanks...the AC & now taxol is doing a number on my hair, but I'm not bald & chemo is doing it's job! I think you said it perfect that people need to know they have options, many oncologists don't know about cold capping. I spread the word as often as I can
Warrior Woman- Wow congrats on being 9 months PFC! I definitely agree w/ the little loose braid....mine is so tiny! but Geralyn recommended it for sleeping at night to prevent matting...It does help & I like my hair out of my face sometimes.
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Goldenpaws, my hair started shedding around Day 21 but it really wasn't that much. It wasn't until the second chemo that I started to notice shedding. My hair was also greasy at first, but now (I guess from the chemo) I can go three to four days between shampoos without it looking oily.
I had an appt with my oncologist yesterday and she was impressed that I had so much hair. But I haven't seen anyone else cold capping so I don't know if she mentions it to her patients. All the other women I've seen there are wearing caps and wigs.
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Thnx Leslie!! I'm feeling pretty confident that the cold caps will let me keep my hair (four treatments. It is a little weird when you wear them though. It's cold in the beginning and then you really don't feel much. So you often wonder is it really working or not?! I'll keep you all posted
have a great night girls So awesome to hear stories about cold cap success!! Makes it all worth it. Thnx for sharing!
♡ Kim
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suladog - I and most of the women here used Penguin Cold Caps. However, recently we have heard more success stories with estrastrogel. However, I'm not familiar and I wanted to go with what's been tried and true. That is not to discourage you from using them.
Curly - hopefully taxol won't be too hard on your hair. The nurses told me taxol affects the hair on you head, face, eyes, more than the body but not as harsh as other treatments. You'll be good. May the hair fairy watch over you
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Welcome Suladog - glad you joined us here! Great group of supportive women! I remember killerfunbags (https://community.breastcancer.org/member/205281/profile) posting a very positive report about her success with Elastogels a while back. Perhaps she will chime in here, but if not, you could send her a private message.
Daniella - 8 weeks is not long in terms of looking better. I stopped feeling super sick (I had bad SE's) at about the 6 week mark. But I didn't start looking better until about 5 to 6 months post, IMO. My pics from 4 months post are icky - sallow skin still. So hang in there your skin should bounce back, it just takes time! BTW, your story is inspiring and I so agree with you!
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thanks! I just bought the penguin things online so I can get started right away.
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dancetrancer - thanks, it's you who is always inspiring. I'll just keep piling on the bronzer like a wannabe Kardashian for now until I start to look like I have some color
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Hey everyone, I'm a newbie. I'm lucky enough to have access to both the Penguin and the Elastgel caps. I have 2 friends who bought them and are letting me borrow them. I just don't know which to use. My question here is how many coolers are you having to use if you use the dry ice method? I start TC next Wednesday and I'm scared, but my onco made me even more afraid when he completely berated me over the cold caps. He says the risks of scalp mets is too great....... Have any of you had this issue? Any advice is appreciated. I have been lurking for 2 months since my diagnosis and this is my first post.
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JennLiza - I know how you are longing for the time to go back to your old hair routines…the time will come. In the interim, I wanted to share the styling routine I did during and 5 months pfc when I went out (esp to show off my hair at my doubting onc office
) I followed the washing routine, then blotted carefully with one of my husband's old white t-shirts. I then used a blow dryer on cool low setting until my hair was just a little damp. Then I rolled it very carefully on big velcro rollers, sprayed some Derm Organic volumizer spray on it and let it dry the rest of the way or finished with more cool blow dry. After carefully removing the rollers, I had good body and at least a day or two of my hair looking more presentable. (the rest of the time I just clipped it back with tiny claw clips and tried to not look at it). If I had just let it air dry, it would have looked pretty scraggly and very fine. Here's a repost of my 2 week pfc picture done using this routine- maybe not my best look, but to others, they couldn't believe I had kept "all my hair" which was actually more like 60%.
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Hey U4 - I just wrote to you on the other post. I'm cold capping too. Had my first treatment (TC) on 1/8. Buy two 60 qt. Igloo Ice Cube roller coolers like Penguin Cap recommends. They work perfect with the dry ice. I ordered mine from Walmart and picked them up the same day. That sucks your MO isn't for the cold capping. I'm doing my treatments at Univ of Penn and my MO is the one who suggested them to me when I freaked about losing my hair. As I mentioned, I'm just new to this whole thing but from all the posts from the girls on here, they are successful. Keeping my fingers crossed. Good luck -Kim
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Hey Hope49 - I love your tips especially the tshirt .... I am using that one and it works great. By the way, if you lost 60% of your hair, wow, you look awesome
Thanks again. You've been a life saver. I may have to try the rollers (even though I'm scared). The 'letting it dry naturally' approach really doesn't look good .... as a matter of fact, its really U.G.L.Y. I'm still in the nothing has happened yet phase. Only 8 days out from first treatment so I'm still scared to death. Thanks again for posting. Have a good weekend. 0 -
Here's another perspective that may help - pony tail about 6 weeks pfc…I could barely keep the rubber band in place! and then another about 2 months later - lots of hair filling in and you can see it's more frizzy because the new hair was curly so it seemed even thicker.
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Hope49, your hair looks awesome! Congrats & way to rub it to the oncology office doubters
U4, Welcome...I'm a newbie too, first post was this week & also hovered/lurked lol...but lots of good info here. I think more people use the PCC than the other elastgels...That's cool you have two options, but how did your friend buy PCC? I thought they only rented? either way it can save you some $ having access to them
The two coolers are the square ice cube on wheels w/ the room for 4 drinks on top...but beware, the new one I got at walmart already busted/cracked a hole in the wheel two weeks ago (within 2 months of being brand new!) 
It makes an awful loud clacking sound as I head in & out of weekly infusions drawing even more attention & odd stares to me & all my supplies. I complained to igloo & they sent me a new set of wheels this week that are different but look more durable, hubby has to put em on still...not sure if anyone else had this problem? Maybe too much dry ice...my supplier is very generous...The first cooler is borrowed from my mom, five yrs old & doing just fine...weird, but good luck w/ your start date next week.Goldenpaws, Good work on first week being done & that's good to know you only have four treatments...not being able to style it much is no fun, but will pay off
Happy Friday ladies
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To the newbies with coolers: we had a little trouble toward the end keeping caps in the -32-34C range with 80 lbs of dry ice. We're ordering another 20 lbs next time. Will report back. (I have a four-hour infusion. If yours is shorter, probably the 80 is fine.) Only eleven days out from my first treatment. Nothing to report in the hair dept. except that It's a 10! leave-in conditioner is terrific if you're missing shiny hair. Also the tangle teaser brush is great in the shower if you have longer hair to wade through. And know that a lot of us are pioneers in our infusion centers, so don't be bothered by negative comments or indifference. The proof is in CCers past. Stay strong Hair Nation! And have a great weekend!
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I too used velcro rollers in my hair when I wanted it to look more presentable - but I know I didn't risk it during chemo. I think maybe 3 months? I'm going to include a pic I took 3 months PFC where I had used the velcro rollers to make my hair look decent. I could have probably used them earlier but I was too paranoid and was off from work so I didn't have to push it.
Oh and I was REALLY careful removing them. I held the hair close to the scalp while removing the rollers so that there was no strain put on the root of the hair.
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I never used the cold caps 25 yrs ago my first time around as they were pretty new and not a lot known about them. However, this time the head of the Breast Cancer unit at UCSF Dr Laura Esserman suggested them for me. When I scoffed that they don't work (what the hell do I know) she said yes they do. When I brought up scalp mtx they said that was not an area I needed to worry about So long story short, I got them and will be starting TC next week. Everything I hear about them is good
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Dancetrancer and hope49 you look awesome.
And really everyone, your body will heal. You will be glowy and healthy again. I went through an equally beauty-leveling thing many years ago, a very bad thing. Right now your body is very busy healing. It's a lot of work. Take care of it. Accept how hard it's working and that your skin is absolutely the last thing on its mind. Eat well. Find people who make you laugh. Get some fresh air. You will be just beautiful again. I know this. Set your sights on something months from now. And know that time will come.
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Suladog, Dr. Esserman is my surgeon too! I have been using PCC since August, when I started AC and did four rounds. I then did Four taxols, took a break to give birth, and am starting taxol again. I did not lose any hair. Ten strands a wash maybe? I think my pregnancy had a lot to do with it. I have my first wash today, since having the babies, and we'll see how it goes. I had a lot of hair loss after my first pregnancy, so I'm trying to keep that in mind and not blame it all on chemo.
There are special freezers in the infusion room. Brooke is great, and maybe I'll see you up there. I'm a short blond with very dark roots. Very. Dark. My husband cold caps with me. I have taxol on Wednesdays, either three more or seven more to go. Good luck!
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I'm 5 weeks PFC and like Jennliza I am shocked to see that hairs still fall AFTER the chemo and coldcaping are done. I couldn't imagine that. I even have to say that they fall MORE than during the chemo. Ouch... This is pretty scary. However I think I feel denser hairs on my neck for a few days. My eyelashes and eyebrows are coming back too.
Does the ones who are several months PFC tell me when the fall will stop ?
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hey there! Good to meet you. I love Dr. Esserman. I've decided to do my TH with my oncologist in Santa Rosa who'd been recommended by my LA dr and the guys at UCSF as the long drives from Sonoma to San Francisco and the long waits down there are too much. Brooke is great. I spoke with her the other day, my husband is doing the cold capping, I guess the nurses up here advise but aren't allowed to apply them. Sorry to miss meeting you in. R
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I shed for 4 months post. A few others shed that long post as well, but not everyone sheds that long.
I haven't seen anyone shed longer than that. I will say that even though I was shedding I was also growing new hair in during that same time, although it took me a while to realize it. At 6.5 months PFC I took a picture of the new growth where I had lost the most hair - behind my ears. Note it is curly compared to the rest of my very straight hair.
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dancetrancer, it's very heartening to see everyone doing so well with the PCC. I thinned done with CMF back in the day but since nobody I was working with at time time even knew what the hell I was going through people kept telling me how great I looked! People actually said I was glowing and asked if we were pregnant! I've never been complimented so much in my life. Go figure. Anyway, during treatment I used this goopey sticky stuff with seeds in it when I washed my hair. It was sold by these people who came around to all the MO offices at Cedars and it stunk!! I also used get my hair colored during chemo and evidently it didn't do anything. I hear I shouldn't try doing that. Thoughts
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I don't know if there's any explanation or if this helps but I went through 6 every-3-weeks cycles of Taxotere with Herceptin and Perjeta last spring. We followed the protocol given by Penguin cold caps to the T as far as chemo days went. Cold caps made the days long and agonizing. I lost no hair other than usual hair in my hair brush. The photo is from 2 weeks post chemo.
I washed my hair infrequently, used organic shampoo and didn't use super hot water.
The one exception tp protocol was, I cut my hair to chin length so that I could donate it. I figured this was my chance to do something with my long thick blond locks. And I didn't want the stress on my scalp of long hair and the brushing it required since it tangles easily.
Oh, I wore my riding helmet and it being a cold winter in Maine I wore wool hats since I like to be outside in the snow.
Anyway, I lost no hair, no shedding during or after chemo. I did loose patches of eye brows, lashes, body hair. My skin took a beating. But no loss of head hair. Maybe it was due to my DH who meticulously helped with the caps each week (it hurt terribly every single time and with each change over the whole 5 or 6 hours). Maybe it was just luck.
It is my one big cringing memory of chemo. And I'd do it again to look normal and be reminded of my vibrant self when I looked in the mirror.
Good luck everyone,
Miche
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Suladog, I also had CMF chemo. For me it was 14 years ago and my hair only thinned a little, not much at all. I worked throughout treatment and only my close friends knew I was on chemo. Compared to the Taxotere/Cytoxan I just completed, CMF was a walk in the park. At least with the cold caps, I've kept my hair throughout my T/C treatment, probably because I've followed the protocol.
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Thanks so much, all the input I've gotten here from everyone helps a lot. I always refer to my last go round with this a civil war chemo as it was a quarter of a century ago! So far I think I'm geared up and ready. I'm going to be doing Taxol and Herceptin 1x wk for 12 wks then just the herceptin as a 30 minute infusion once a month for the rest of the year. The only thing that's new to me this time is the cold cap, and that's why everything everyone posts here means so much to me.
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for those worried about PFC shedding ....I was so worried because I felt like I was losing more hair PFC than while I was doing chemo. I shed for 4 agonizing months and was worried I would lose all my hair. If you have checked out my blog you will see I still ended with a full head of hair. Have faith...I know how hard it is:). Hugs!!
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Thanks mdg and dancetrancer for sharing your PFC experience.
I feel at ease by your stories and photo.
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Does anyone have experience coloring their hair during chemo while using cold caps? I know it is not recommended/permitted but I have nearly all white/gray hair and my "natural" color is very dark so even if I save some or most of my hair through the cold caps, having it turn white over the months is not a great option either. Can anyone tell me their experience with hair coloring? I have not started chemo yet, but expect to do so in 1 to 2 weeks. Thanks.
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