Cold Caps Users Past and Present, to Save Hair
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One year ago this week (this was in the hospital with my daughter who was ill with jaundice at the time - she was given - thank goodness - a clean bill of health this week). It's been quite a year.
Me today, With headband holding back top hair to cover the bald spot - and the back just troll-like and scraggly. It is going back into a clip shortly.
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Quick question: For all of you who keep shedding for quite a few months, are you also growing in new hair at the same time? I know that people who don't cap usually start 4-6 weeks after?
Thanks!
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Susan - I have the same question, I hope some folks will answer!
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I shaved my hair underneath to the skin... And you can see it is growing back- slowly but surely. So in my experience- I do have regrowth!
I shaved it because I was sick of pulling out chunks- so I just got rid of it all back there.
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I started new growth right away actually during chemo. I have baby hair all over literally. Big shedding stopped at about 8 weeks PFI. Hope that helps.
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I am 6 weeks PFC and noticed that my sideburn on the right side, that disappeared during chemo, is back. Did not have any other bald spots so can´t tell. Still shedding like crazy though!
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yes I shed for 3 months after chemo and grew hair back at the same time. I noticed stubble coming in about one month after my last chemo. Some hairs are a lot longer than others so I think I had some growth before chemo was finished.
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I think my hair were growing on chemo. I have a short cut so now it's a longer hair ...messy kind of style. But I also see some small hair grayish coming out. I am 4 weeks pfc and planning to go for haircut on Tuesday....Is it to early? I just can't stand it anymore!
What is an instruction on using gel or hair products pfc? Is it 3 month? I can't wait that long...Did anyone use hair gels or any styling products before that time? Any suggestions on what to use for styling? Since I have short hair I need to style it if not with products but at least blow dry it....Also someone told me I can use coconut oil to style ..?? Have anyone done it or knows anything about it?
Who was not a good girl pfc and didn't follow cold capers rules? Cofessions please!!!
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Be careful anyone using WEN hair products. I just saw some info on bald spots and hair problems with conditioners. I bought the kit but only used it a couple times.
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I used Giovanni leave-in-conditioner (SLS and PEG free) on the ends throughout treatment and pfc
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Icandoallthings , which caps did you use? Happy for your results!
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Thinking of you all today and holding you in my heart.
I agree with Aimless - there is such a wide swing on the success rates with the capping. I would think with all the years that Penguin (I think the elastogels are newer?) has been doing business they would have more data that would help us make the best decisions as to whether or not to cap. When I'm in a dark/crabby mood I think they do know but sharing that knowledge would decrease their potential market. Other times I think it wouldn't matter anyway because maybe those of us who want to try to save hair would do the capping anyway.
Meow and Elise, my heart is aching for you and the trouble you've been having. Sending hugs.
Icandoallthings - your hair looks phenomenal! Aimless - you look good too- you seem to have a lot of hair!
I just had my first chemo/capping (penguin) on Friday - thank you for your encouragement. I was only mildly panicked, if there is such a thing. I'm not sure we got the caps on correctly the first few times so I'm worried. I threw up several times in the last 1.5 hours - each time I took off a cap. Not that pleasant. I can't take the usual anti-nausea drugs so I'm going to have to look into some other options.
This is not a hair question but hope it's okay to ask here -
Do you all have a port? I don't have one yet and I don't want one. I have small veins that roll and am being told that it would be good to get it, esp since I have a year of herceptin. My concern is the anesthesia and my hair!! I don't want to do 12 capping sessions if the anesthesia before #2 is going to impact success (although maybe it's a moot point since it seems there's no way to figure out what exactly impacts success with cc).
Runner70 - I think I read you are an anesthesiologist? Sorry if I'm mistaken. I can't do Versed/Fentanyl so for the port I will get Propofol/Dilaudid. Everyone always talks about how anes affects hair but I think it may have more to do with stress of surgery? Also, sending you best wishes for quick recovery after completing radiation. Congratulations! I hope life soon becomes much easier/happier for you.
Thanks. Best wishes to everyone.
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Aimless, I agree. I've read women using peguin and didn't do well and some using Arctic did well. For me I had less than 6 days to get Everything for peguin caps. I had to wait to see dr than it was rushed. And couldn't believe price diffbetween them. The purpose is to constrict the blood vesels. Arctic provided all but ice. That was helpful I was stressed
We still hve to make room for human error though since we don't do this all the time.
After my maxtecomy I took 1000 vit c, 50 mg zinc, multivitamin , biotin , vit d w d3, and my hair grew fast! My hair was goregeous it was in best shape ever. It took me 3 years but my hairdresser agreed. And now it's almost all gone.
Just had 2 infusion feel terrible. I'm in a dark place. Don't think I can do 2 more
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I think it is all depends on chemo regiment not only cap company. Some regiments work better like Taxol .
I was very worried that I signed up with ACC not PCC. But it worked...unless they suddenly will fall now?😰😱
Willa, I am so sorry about you throwing up from Taxol.Its not common SE on it. I was fine and my MO said it shouldn't have any usual chemo side effects.... As for port..I never put it. My MO against it if possible to avoid it. I am glad I didn't install it. I don't feel like something strange in my body.....
Meow, so sorry about your Hair and how you feel. I am feeling some days shitty to without loosing hair... I can imagine what you are going through...I still have swollen face.legs a bit and my eyebrows don't look good. I need to use powder. But I just hope as long as we but this cancer....we should be eventually fine....
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Willa, I got a port and was happy to have it. I had propofol for the port surgery. No problem with hair at any time during or after chemo - the caps work really well with taxol and herceptin
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meow:
I used artic!
Viktory:
Burts bees makes an avocado balm that you can use for styling. My husband uses it. I'm not sure how cold cap friendly it is, but it's very natural!
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Hi! I have just finished my 4th of 6 chemo treatment of Taxotere, Perjeta and Herceptin(don't see many women on this regimen). I still have my hair!! It did start shedding more after my 3rd treatment but not noticeable at all! No bald spots either, I am very happy and glad I decided to go with the Penguin caps. It is such a job for my best friend and mom, they both come with me. I feel like a princess sitting in the recliner resting while they are getting the next cap ready and kneading it with their gloves on. They for sure get a workout!
I have a port, they actually used local, Fentanyl and Versed. I didn't feel anything. It is the lowest profile port that is out there.
I have no idea if I have any hair growing at this point!
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Hello all,
I've used PCC and I'm afraid to say I'm very disappointed with the results. I'm 6 weeks PFC and still shedding daily, average 100-200 strands a day. Much worse on wash day. Had 6 treatments of TCHP (Taxotere, Carboplatin, Herceptin, Perjeta). Shedding started with the 5th cycle. My hair is thinned all over but mostly on top. Hair looks horrible, damaged, dry etc. had a trim last weekend but as long as it's shedding, not much my stylist can do. I look hideous and very depressed. At what point one would give up and chop her hair and start wearing a wig and get on with life? This wait and see game is very upsetting.
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Ladies, those of you who are PFC and indicated still shedding, what amount of daily shedding are we talking about? I'm afraid at my rate of 100-200 strands a day I'll have nothing left in few weeks. Are you still following the PCC protocol? I am, down to not drinking caffeine, yet seems like I've lost half of my hair so far, if not more.
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Dear KD and Meow, please don't be sad. I think the last time I posted here I was having a meltdown after losing 3 full zip locks of my hair after treatment #2. Being one of two users of Dignicap on this board, I felt so alone and regretted not doing Penguin. Several very sweet ladies on this thread calmed me down by telling me that we all have more hair than we think, and that if I had some hair on my head after two treatments I had succeeded. As I kept shedding like crazy through treatment number 3, I lost all hope that I would be able to get through this with any hair on my head. I am now a week away from my 6th and last treatment and I believe I've lost more than 60% of my hair and have 2 gigantic boldspots on top that make me look like Golum, however I get really creative with bandanas, hats, and all kinds of parafernalia and people don't notice, even my Radiation doctor had to call everyone in to stare at me in awe. I'm not gonna lie, most of the time I hate what stares back at me on the mirror, but I know this is temporary and that I will grow my hair back and will get my face back. I am happy to report that I have some serious regrowth going on, my father's theory is that a lot of my shedding is because new hair is pushing in (maybe?) I have noticed that I'm not longer shedding new hair, just long, old hair, and I am convinced my boldspot looks a little better this week. I am still shedding to the point where I can't go out to eat because my hair will end up on everyone's meal, still shedding a ton every wash day, and i expect to continue shedding like crazy after I'm done, but I also believe that I will be able to pull it off, and I trust everyone here who said that regrowth is faster with cold caps. So please don't beat yourself up and don't be sad, this entire process is very emotional already, and trying to keep our hair on top of it makes it even more difficult, try to ride it out till the end if possible and don't lose faith, but specially be kind to yourself, your body needs you to stay positive throughout this exhausting process. Love to you both. Edu.
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Edu - Thank you so much for your encouragement and kind words. I really thought that I could save my hair with PCC and get good results based on the feedback and pictures of some of the ladies on this site, and since I was doing so well in the beginning. The late shedding took me by surprise. I look nothing like my old self and it's hard to swallow. Thanks again. Glad that you see regrowth. I don't have any yet.
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Hey Ladies,
Just stopping by to say hi and offer any encouragement. I am now 7 months PFC. I had TCHP 6x. I lost about 1/2 of my total hair. Never had any bald spots except for around my ears and the base of my neck. Everything is growing in nicely!! I used Penguin Cold Caps and they really do work!!!
I have now had 2 haircuts, dyed my hair twice and wash my hair in warm water. I still baby my hair a lot, and will never again use shampoo with sulfites but I have my hair!! It is a mix of different lengths. I think it actually started growing back in while I was capping. I have my OG hair that I saved which is now a bob length,hair that is about 4" long, 3", and 2". It's all filled in on my head and disguised into my OG hair.
Keep capping!!
Now if only my eyebrows and eyelashes would start growing back in I'd be a happy camper
Xxxx Mel
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Thank you for sharing! I am about to buy cold caps. Just had infusion #2 of a total of 12 weekly infusions of Taxol. Hope it's not too late. What brand do you recommend
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my3rosebuds, although weekly taxol/herceptin is "kinder" to the hair, it may be too late to start cold capping after two infusions. I used Penguin cold caps; the other brand is Elastogel. Companies like Arctic and Chemo Cold Caps use Elastogel caps but provide assistance
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aimless-my hair looks exactly like yours only it's like mostly gray😡 Hate that this is how it turned out but happy to know there's someone who knows what my hair is like and how it feels..
I have decided that I'm going to trim it 1 inch a month until new growth catches up with yuck hair. Then I'll figure out what to do with it all. I hate having this rats nest of scraggly hair:( I'm guessing new hair is growing. I mean it has to be right? It's 12 weeks pfc Saturday.
Icandoit- your hair is amazing!!! Congrats! Another success story:)))❤️
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Just want to say that I didn't follow a protocol. I had my hair cut today. Today is 4 weeks PFC. Let's see what happens after.My hairdresser used that " horse comb" we get from cold cap company and blow dryer on cold. 💂
As for grey hair I use powder to cover. It last till next hair wash. Can't wait to color and high light my hair.
When can I do it? Another 8 weeks wait?
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Phalia, did you shedding slow down yet?
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here is a product to cover grey. It works.
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Phalia, Yes, sadly we can relate to one another!! Still, better than bald, I really do believe that. Question: If you are 12 weeks pfc, can you color it yet? I'm just at 6 weeks, but figured by 12 I would start to color (organic natural hair color) and cut (whatever there will be left to cut). I am exploring cute "short curly" styles that may be appropriate by then. I have new growth - but still need my front combover to cover the top of my head.
Viktoryak, I use the Madison Reed to cover my sideburn gray hairs - the white hairs look like there's no hair there..so it helps.
Someone remind me when a warm blow dryer or a regular brush are safe again? (like 6 months pfc? more?)
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Aimless: I trimmed my hair 2 inches and colored it also at 4 1/2 weeks PFC. Both my stylists are familiar with PCC protocols so my colorist used a very gentle semi permanent color, and did not quite get close to the scalp so underneath and on top I still have shades ofgray hair, but overall my hair looks fuller. This did not impact my shedding of 100-150 strands a day. My hair still looks horrible specially since I used to blow dry and flat iron it every time I washed.
I saw my oncologist today and he was surprised to find out that I'm still shedding in the 7th week PFC. It's very scary and sad. Not sure if I'll have any hair left soon.
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