Cold Caps Users Past and Present, to Save Hair
Comments
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KD and Aussie Girl - Thank you so much for your comments!
KD - Good to hear from you! Hope you're doing well with work and your life is normalizing. And, of course, your hair is growing in well!
Jiffrig - Congrats!
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Tunegrrl - You mentioned you were using Toppik. Do you find that comes off on your pillow? Does it come off during the day if you touch your hair? Are you still shedding PFC or has it stopped for you?
Thank you! Hope you're having a lovely weekend.
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Willa, thank you. I'm feeling better although still get very tired from time to time. As I said before work is a very good distraction and keeps my anxiety at bay, but I don't thik life will ever be normal as we knew it before cancer. The fear of reoccurrence is always there.
I feel better about my hair. Shedding is stable and only when I style it. Washed it in the shower very gently lastcouple of times and it felt wonderful. It's growing in also. Still very thin compare to before chemo hair ( I think I have about 40% hair), nonetheless is hair and looks normal to others.
How are things with you?
Wish all the ladies health, peace of mind and a nice weekend. Hugs.
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Hey peeps, how do i look in my brand new cold cap? Yikes, it's a Cold Cat!!!
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meow0369 I am using Penguin Cold caps.
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Willa- I'm sorry to hear about your brows and lashes. The same exact thing happened to me. I looked worse after I was finished with chemo than I did during and it was because mine all jumped ship after. I used Revitalash and they started growing back within a month. Once you have little stubs coming in, that will help a lot!
I'm on round 2 now. This past week I lost all my lower lashes and about half my uppers. And the hair on top of my head that fell out is now about 2 inches long and sticks straight up. I look ridiculous. It's depressing to think about this time last year I was a normal person living a normal life. Ignorance is bliss...
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KD- I'm happy to hear you're feeling better about your hair. I'm doing okay. Thanks for asking. I'm stressing about the ongoing daily hair loss and how long it will continue. Plus I'm now looking at radiation (a surprise), then more surgery and of course the dreaded hormone therapy (although people here have been good at assuaging my concerns). I go back to work in three weeks and, as you suggest, I hope it will be a welcome distraction. It would be nice to ultimately find some peace instead of just using distraction after distraction to get by day to day. Maybe that will come later. I wish that for all of us.
Runner: Thanks for your response. I think I'll get Revitalash or Latisse. I'm not glad you were in the same boat of looking worse after chemo than during, but it makes me feel less alone. Seems unfair that all the eyebrow/eyelash loss couldn't happen during chemo, quickly grow in, and then we would get to kind of wake up and actually look somewhat like ourselves. I guess that's too much to ask - no Sleeping Beauty for us. .
Good vibes to all. Hope next week holds some grace and light for everyone.
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Hello ladies,
After the "BIG" shed how much more shedding goes on, on a daily bases? My big shed was last Thursday 7 days post my 2nd infusion and now I'm scared to wash my hair again..
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Willa- I've been taking tamoxifen since August and honestly it's no big deal. I get hot flashes when I drink wine but no night sweats and I'm trying to remember the last time I had an evening hot flash and it's been a few days. I think you adjust to it. I was worried about it but it's turned out to be the least of my problems. I'm wondering if it's even working.
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Frankly my dear, I dont give a Deym!
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Pamela23, I did penguin. It went well. But I hired one of thier therapist for the 1st infusion so she can teach my husband and my sister. It's a little uncomfortable I felt like I couldn't relax while getting my infusion since it had to be changed out every 30min. Then after my infusion I had to keep doing the caps for 4hours and since the caps came with the Therapist I had to wait in the waiting room to finish. But we got the hang of it and my own Set is arriving Tuesday. This will be better cuz I can finish the caps at my house next infusion. I will bgetting 8caps and 4headbands . Make sure u order your infrared thermometer and my therapist said 90lbs of dry ice. Oh and take 2tylenols 2hrs before. If you have more ?s let me know. TodAy was my 1st wash post 1st chemo and wasn't bad. Hope it stays.
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Hopfull & Pamella,
Even without hair, i am sure you'll still look beautiful.
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deemendoza - I had a big sheds on day 19 & 21, I had my 2nd transfusion on day 21 and it's just been kind of steady nothing really horrible yet but I too am afraid to wash my hair. It's getting really thin and I'm hoping I can hang on to some of it during my next 2 treatment.
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Willa, i haven't found that the Toppik powder comes off on anything at all. Just washes out with shampoo, but doesn't migrate to clothes or my hands or my pillow. I use it on the top of my head, though, where the pillow doesn't really touch. I seem to be fine using it after air-drying my hair, and it doesn't need to be touched-up between washes. Makes a huge difference to how normal i look. I don't ever go without it.
The other day i did not put eyebrow makeup on after a shower while i was home alone. Not nice seeing i'm down to about 40% of my eyebrow hairs. Usually i put Lancôme waterproof gel-cream eyebrow stuff on right away. It, too, seems to last until my next shower. Best eyebrow makeup i've ever tried.
http://m.shop.nordstrom.com/s/lancome-sourcils-wat...
Probably especially good for blondes because it colours even the palest little eyebrow hairs to a darker colour that looks very natural. Shades in the sparse areas. Overall effect is amazingly good. I demo'd it on one eye for my BC friends and they all simultaneously said, "whoa!".
(I then gave them each a bit in little containers, since they all wanted to try. You do need an eyebrow makeup brush though.)
Now i'm thinking i'll call for a consultation with a highy-recommended microblading guy here, to see about getting superfine eyebrow tattoos. Not cheap, but lasts for 18 months and looks very natural, apparently. I don't want to lose ALL of my eyebrows and feel sorry for myself for a few weeks before they grow back.
I had a kind of dramatic/sad/loving weekend, sorry for the delay in responding.
All the best to everyone keeping their hair on
Oh yes, i'm two weeks PFC and shedding is light but continuous. Just a bit on my hair brush each day. I save it in little ziplock bags by the week, and the shedding is the same as it has been for a while. Maybe 2.5x my normal rate.
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Sorry for all the questions. Just hoping to hear from those who've already encounter this journey. I have one area in my scalp that just became very tender to touch ... what does that mean?
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Tunegrrl - First, I hope you're okay after your weekend. Lots of love to you. Thank you very much for your comments on Toppik, the eyebrow product recommendation and shedding. So helpful. I'd be curious to know what you think about microblading after you meet with your guy, if you feel like sharing.
Runner - thanks for reminding me you're doing well on Tamoxifen. That's great. How's your pain? Are you still needing the steroids? Also, forgot to mention earlier but I'm sorry about your 2" hairs that are getting in the way of your otherwise fantastic "do". Such defiance. Maybe they have a thing or two to say about chemo.
Deemendoza - I've had that scalp tenderness on and off for months - throughout chemo and now PFC. It's annoying but I personally haven't noticed that it signals a big fallout or anything (knocking on wood). Hope that reassures you a bit.
Good luck everyone on the hair front.
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Hi everyone,
I have used penguin for 4 AC rounds and I just had my first Taxol+Carbo my regimen last Friday.
I'm pretty annoyed because I was supposed to have 4 rounds of T after the AC, but we just found out that I'm BRCA1+ so instead I have to do T+C every week for 12 weeks! (Well, 11 weeks now).
I had been doing OK with the cold caps under AC, but last Friday felt A LOT colder than the other times. The weather has gotten a bit colder, maybe that made a difference? The schedule change has also sapped my motivation. And I didn't bring a coat or blanket (smart), but I don't think I had done so before. I just had a hoodie with tights under yoga pants. This Friday I'm going to bring a coat and blanket. And also try to drink something warm while capped up.
I'm thinking about getting an electric blanket, but I can't find any online that seems to be very good quality. Does anyone have any recommendations? Thanks for your help!
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Gmmiph, Thankyou for the adorable animal pics they cracked me up!
Runner, how many wks PFC are you? I just lost 20% of my eyebrows and half if my right lower lash couple days ago for the first time. (7 wks PFC ) I'm 8 wks PFC now and hope I hold on to the rest. My hair also started to shed again at 6 PFC. It hasn't stop yet. Only have an inch new growth where my bald spots are but see scalp still.
This is for the ladies FINIISHED with treatments:
I wanted to let you ladies know that I came across an article that I cut out and saved last year during Breast Cancer Awareness month. This was before I got diagnosed. It said along w cutting processed foods ,red meat , dairy(eating a plant based diet) taking 1200 calcium, taking 2000 vit D3 since 75% of women are diagnosed with Breast Cancer are deficient ( I was) , taking 81mil of baby aspirin which decreases stroke, heart attack, blood clots, colon cancer, skin cancer, and Recurrence! I thought I'd pass on the information even though I know you ladies may already know about this. I started taking a baby aspirin recently. Of course always be sure to ask your Dr it's ok to add anything to your meds.
3mily, I'm also BRACA 1+. I had 4 rounds of taxotere and carboplatin. They told me that combo was specifically designed for BRACA carriers. I see your regimen is different , I'm sure for your specificdiagnoses. Hang in there!:)
Edu, how many times a week were you washing your hair during shedding?Did you wear a wig or anything ?
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Wigs, anyone?
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3mily, I found an electric blanket made by Sunbeam at Walmart online. ( in July) I like it but don't know how long it'll last but its soft and plush. I paid around $35 marked down. Hopefully you find one now that its winter.
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My hair after an electric blanket shock...
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meow- I'm about 6 months out from chemo. Where has the time gone? It seems like last month. I lost all my brows and lashes about 5 months ago so this will be my 2nd time. At least this time they are coming in faster!
Willa- I'm still on steroids. Blah. Slowly tapering down. It takes longer than I ever thought it would.
I must try that Lancôme eyebrow stuff! I've never heard of it!
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Emily, although not an electric blanket, these moist heat heating pads are incredibly good
https://www.amazon.ca/Therma-Michael-Graves-Heatin...
There is something about the moist heat that makes it more soothing and penetrating. I bought mine after experiencing one during a massage therapy appointment years ago. Really, they are superb.
Sorry to hear about the BRCA1 and extra chemo. That totally sucks. Better to know now, i guess, and get the best treatment for your situation. More chemo now is vastly better than more chemo in the future. Good to get it over with and have peace of mind that you made the best possible choices.
Congrats on keeping most of your hair through AC!
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My hair after moist heat heating pad.
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3mily, saw electric blankets at costco this week!
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Hi Ladies, what is recommended to wear on our head at night to help reduce friction? Just a hair net or is there a special cap? I also still need to get a satin pillowcase. I start treatments tomorrow. So much to organize!
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Hi Ladies... I am new to this site. I am using Penguin Cold Caps. I have finished my 3rd treatment last Thursday. I have lost maybe 1/4 of my hair with the biggest shed this week. I had a little shed after 2nd treatment with the huge shed this week I am getting nervous. I am doing AC + Taxol. ( I haven't figured out how to do profile with dx and treatment yet😀) How many got a slight trim while doing treatment? I see PCC says an 1/2 inch cut is ok. If you did do a trim was there any effect? Also did anyone bend the rules and do any styling you were nervous about but it worked out? I'm a mess and ok with it but on certain days it would be nice to look a little more polished.
Pamela23 - I just use the satin pillowcase. I had bought before dx the Threshold brand sheets at Target for my child's bed. I notice now the pillow case fabric is softer and silkier than the satin one I spent a fortune on 😀. Oh and everything matches...
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willa216, Thanks for the knowledge, I had another big shed with this mornings wash.. I wonder if the shampoo plays a role? I first put in conditioner and I didn't feel it get matted but then I used the Onesta shampoo and that's when I feel it matted and as I started combing it through very very very gentle I started to get strands and strands of hair on the comb and hands. It doesn't seem like I have a lot of hair (or had before chemo) but when it dry's up I look like a bad version of Diana Ross (now with the shedding not so much) so anyone else can't really tell but me. 2 more rounds of AC to go and then its Taxol for 4 rounds. REALLY REALLY holding on to hope here.
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My experience withPCC and A/C is big shed from after second A/C on until I have about 25% hair left. I have had to wear my wig since after 1st taxol. Good news is that w/A/C you don't keep shedding after final chemo as others mention and it will grow back quicker and better than w/out cc. I am 1 week PFC and I have some regrowth starting. You are not supposed to use conditioner or regular shampoo. I only washed it every 2 weeks. I did get it cut down to a very short pixie after losing so much. I wish PCC warned people about how rough A/C is on saving hair.
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Hi Ladies,
I've been keeping up pretty good on here, but haven't posting....really not enjoying my SE. Have kind of a 'kicked in the stomach" sort of feeling..amongst other things,,,and I know it could be worse. : ) Had 1st infusion Oct. 21, and 2nd infusion Nov 10th, so 2 more AC to go as well deemendoza. I am doing Paxman Cold Caps and I'm shedding pretty steady, and started about day 20. Wash day tomorrow and I'm really, really afraid I'll wash all my hair out. I've lost quite a bit of hair, but evenly so far, no bald spots...yet. My hair is shoulder length, layered so the bottom layers are getting pretty sparse. Being on the AC/T I know it's tough on hair, but hopefully the shedding sloooows down soon. Fingers crossed for all of you! :-)
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