Cold Caps Users Past and Present, to Save Hair
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ysw63I gently combed with a big wide toothed comb first thing in the morning and experienced a lot of hair loss due to sleeping and lots of tossing and turning.🙁. Throughout the day I'd run my fingers through my hair to capture loose hairs which were all over my clothes, bathroom floor, chair at work, in my car, etc. Sometimes I'd comb again at night before bed. I think removing the loose hair is important to avoid tangles and matting which thankfully I never experienced. My hair is growing back at a crazy rate now ....it seems like it's going to be thicker than ever.
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I brushed my hair once a day with a wide tooth comb, just to make sure there was no matting. I either left it down with a headband or put it In a braid or a loose silk scrunchie.
In terms of final result-my hair was relatively thin to begin with. After treatment I had a massive bald spot on my crown. It was pretty upsetting. However, Within about 3 months it had completely filled in and you would never know! Despite losing a lot of hair, I now have seemingly normal shoulder length hair.
I Just started using my husbands hair gel to tame the regrowth on my crown. It’s about 2 inches long now and growing quickly.
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Hair gel! That’s what I need! I look like a cockatoo right now!
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For those of you that cold capped during your chemo: What did everyone do when they were shedding heavily to keep from shedding hair all over the house and in bed at night? Did you where something at bedtime to catch all the fallout? They discourage hats or anything that will make your scalp hot. Wear your hair in a loose ponytail/pigtails?I am combing with my wide tooth comb when I get up and before I go to bed. During the day I keep my hair in loose pigtails since my hair is shoulder length but the scrunches are sliding out throughout the day because my hair has thinned a lot and every time I redo them more shedding happens.
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https://www.headcovers.com/mod-slouchy-snood-bamboo-cancer-hat-sal/
I had the same issue. I wore a bamboo knit "snood" around the house and to bed, to keep hair from getting all over the place when I was shedding. Even so, it was like a sheepdog joined the family for awhile.... I kept my hair very well, and a few months after chemo, hair was nice and thick again.
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Did anyone have their hair grow during cold capping? I swear my hair looks longer even while parts of it are shedding.
It's the craziest thing, maybe just my imagination
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yes I did. In the first month or 2 so I used old style hats from paxman and the hair on the top of my head where there was no way of making it fit better has largely been lost. For the following months I used the new style cap which fitted better in that area so I had a regrowth while on chemo.
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I just shedded everywhere and my DH vacuumed it up! I'd cut my hair in a pixie for cold capping and they were about the same length as the cat's hair. I would jokingly blame it on the cat.
My hair did not grow during chemo.
I kept at least 80% of my hair, using Penguin Cold Caps. My hair was really thick to start with. I think user error is the only reason I lost patches of hair. We weren't as good with the headband during Chemo #1.
The pics where I'm goofing around with my hair sticking up are from just after my last round of TC.
The one where the temple hairs are growing in is 1 month after chemo.
It is about 6 months after chemo now and all my hairs have grown to the same length. I've had 3 haircuts since chemo, and my hair looks nice and thick.
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morrigan.... yes my hair was definitely growing while on chemo. I got it trimmed a few times. It’s not your imagination
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ontarget.......you had great success with cold capping! Your hair looks fantastic! 👍🏻
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Thanks for the replies. Glad to know I'm not crazy
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I had my third session w the Dignicap yesterday. It’s definitely the most challenging part of my chemo day but it seems to be working. I’ve had minimal shedding but my hair is fine and I got it cut pretty short before starting chemo.
My husband puts the caps on and takes them off for me. Yesterday was the first time I saw the inside of the cap closest to my scalp when it came off. It was filled with frost. He says it always looks like that when it comes off. My question - is that true for you, too? I didn’t think frost/ice would form above 0°C. My machine is set to 3°C.
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I sit for 2-2.5 hours after Chemo before the cap comes off. By the time I leave the Center my hair is damp/wet but, not cold or ice. I've seen the cap after it comes off no ice/frost.
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yes it is always frosty. I taken it off almost immediately- did not want to give it any more time than absolutely needed. Wetting hair with conditioner ensures it does not get frozen stuck into the cup.
PS. I really appreciate having had all the info about capping here - I know I may be stuck on chemo for life at some point however long it is so every bit of normality - being able to avoid wigs with corresponding downsides - is highly appreciated.
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Treatment 4/6 of TCHP. Nurse mentioned that the shedding should slow down. Is that what you guys experienced?
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Morrigan....
We are all so different. Dignicap told me that too but no..... I continued to shed for 4 months after my final chemo. But your experience could be very different. When my shedding finally stopped it started growing like mad! I think my hair will be thicker than before chemo! Hang in there...you’re almost done and the shedding will stop soon.
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Thanks Seawall. We'll see how goes. I remember reading that shedding would continue post final Chemo so I was surprised when the Nurse said the shedding should slow down at this point.
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I've had three treatments and still shedding. It isn't a lot though - I can't complain.
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I combed my hair today and not much came out, this could just be an oddity. The last few days I was shedding as normal. I still have most of my hair. The only places I have issues are along my part and in the crown (looks receeding).
It doesn't matter since I only leave the house to go to the Drs but, I can easily cover those areas by moving hair around.
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Those of you who are not using a cold cap that uses a machine (Chemo Cold Caps, Penguin, etc)are your infusion centers allowing you to have a helper to help you with your cold capping during this Covid 19 pandemic?
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Hi, I'll be starting chemo in May 2020-has anyone from Canada had insurance that covered the cold caps? I have a decent plan but from these posts it sounds like Canadian insurers aren't on board.
Are there other avenues for financial assistance or reducing costs for Canadians who want to do this?
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the Rapunzel Project may provide financial assistance to those who qualify. Also, individual cold cap companies may offer some discounts. You may want to ask directly whichever company you are planning to use. And possibly you may find some cold caps for sale (used) on eBay. Buying a cooler and dry ice and used caps would save a lot.
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It's been three years now since I've cold capped. I look back on this thread every once in a while and thought I'd add my story here in the event that it may help someone. I used the Dignicap cold cap and I traveled to the only place in my state (2.5 hours away) that had one in order to use it. I learned a few things along the way. Keep in mind that everyone is different. What follows is just my experience.
1) Cap fit is essential. If your head doesn't fit the cap just right, you will loose hair in that area. It is also important that the team you are working with is experienced enough to understand this. There are ways they can modify the cap (stuffing things in to make it press down and/or making sure it's really tight) to help. I lost the majority of my hair at the top of my head and all around the nape of my neck and behind my ears where the cap either didn't reach or wasn't snug enough. I cold capped next to a woman that didn't loose a single hair on her head while I looked like one of the three stooges.
2) Don't give up. When that first shed happened I was in the shower and I lost a lot of hair. I hadn't combed my hair (i recommend combing before wetting) and so it got all tangled up. I was crying and rummaging through the drawer for scissors. Be gentle on your hair with only gentle shampoos and very infrequent washing. Plan on shedding.
3) Get creative. I lost nearly everything on top of my head but I kept my bangs and some length in my hair. That allowed me to use a clip on hair piece instead of a full wig. It covered the crown of my head. I was also able to pull my bangs back with a little clip and you could tell it was "my hair" so people didn't even think twice when they looked at me. I made it through four rounds of chemo with people never really knowing anything except that I had stringy hair.
4) Cold doesn't begin to cover it. Ladies, it's frigid. But, it only lasts for about 20 minutes and then you are numb. You CAN do this. Any man you know CANNOT do this, but you can. As your hair gets thinner (if it does) this gets more painful but it doesn't last the entire time.
5) I would do it again. In the end I lost about 60% of my hair. I ended up with a long, stringy, gray rooted mess BUT I had my own hair and I was able to work it well enough that it wasn't obvious. I started out with very thick, long hair and in the end had a pile of mess on my head but I truly believe it was the best thing for me. Not only did it make me feel good that I wasn't totally bald (not a big deal to some people but it sure was to me) but I'm here to tell you that cold cap did something to my hair follicles. I have the absolute longest, thickest,healthiest hair now than I've ever had in my life. My hairdresser is so mad. Every time I go in she mumbles, "only woman I've ever met that ended up with more hair after breast cancer than she had before." hahahahaha. My last cold cap was 4/28/2017 and now my hair is well down past my bra strap in the back. I tell everyone to get used to it because I have no plans to cut it.
I hope this helps. Feel free to PM me with any questions.
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ysw63 - I just finished my final treatment last Thursday and was able to have a coldcap helper. I know each chemo center is different so you may want to double check. We are allowed one guest. We all had to wear masks and get temperature checks but that was it. We joked the dry ice was keeping any little creatures at bay near my head.
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ysw63- my friend is cold capping weekly with Penguin and her infusion center is not allowing her to have anyone with her. She's doing it herself, and her hair is still on her head after 6 sessions!
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LowCountryGirl, thank you for such a detailed explanation of the process. I mostly want to avoid having people know about the cancer and chemo,so I like how even though you lost some hair you still had your bangs and could hide your thinning area.
OnTarget-this is my dilemma exactly. The cancer centre I go to also won't be allowing anyone to come with me due to covid. Was this very difficult for her to do herself?
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I used Penguin Caps and saved most of my hair- the caps cost 500/month--but--If you ask -they do rent used caps- for 300/month--they are fine- all cleaned and sanitized--highly recommend this company and product--best to you,Kaylie
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LowcountryGirl thank you for your post. I finished using DigniCap January 30th. I agree so much with how important it is for the cap to fit well and that the person fitting the cap is experienced. My hair shed a lot but i had no total loss in any areas during treatment. No one knew I was going through chemo when i went to stores etc. I didn’t have to wear a wig and i didn’t look sick. Knowing the cap worked made me get through the first 15-20 minutes of the freezing cold. An electric blanket is a must! So in my case, it was three weeks after stopping treatment when my hair started shedding a lot again. I had some balding spots on top of my head. I previously posted pictures of this and how using a powder worked so well with covering these areas. After about 8 weeks or so, i didn’t need the powder anymore. My hair is growing back. Its such a mess right now with short and long pieces but I wear it up in a twist in the back and the long pieces cover the short pieces all up. I feel that the DigniCap is so worth it Good Luck to everyone
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i had my final treatment in Wednesday. As happy as I am with the results I'm not going to miss that cap. I did really well with it, the cold didn't bother but, I'm really glad it's over with.
I'm going back through posts because I know there were some recommendations but, if anyone has advice on shampoo or supplements that will help the hair grow I'd appreciate some tips.
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Morrigan.....congratulations! Isn’t it a great feeling to be over it? Such a relief. 💕👍🏻My advice is just be gentle with your hair until shedding has stopped and you’re back to normal shedding levels. Then gradually add heat, chemicals, more frequent washings etc. I believe in taking Biotin tabs daily once your oncologist says it’s safe.
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