Cold Caps Users Past and Present, to Save Hair
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claire1973- Saying prayers for an easy surgery today and a quick healing process. Please keep us posted when you feel up to it.
💕
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claire1973-
Just checking to see how you're feeling and sending you prayers for a speedy recovery.
Heading in for #3 of 6 tomorrow ... almost halfway through! 😀🎉
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HI all,
The surgery is done. thank goodness. I was able to have the mastectomy and reconstruction in one surgery, so I do not have a second one. sooooooo thankful. I feel fine when I am still but have lots of pain when I move. I'm staying in bed as much as I can. hugs to everyone,
Claire
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Hi Kim,
I'll be starting chemotherapy next Thursday, 6 rounds of TC. They've offered me the Dignicap. Do you think it would be a good idea to go ahead and get a pixie cut prior to? My mom already suffers from alopecia, so I'm not expecting to keep most of my hair, but I do want to prevent the follicles from completely dying. The dignicap site says you don't have to cut your hair, but I'm wondering if it's less traumatic for the strands as far as the weight of the hair goes, and if maybe it just makes it easier to cap.
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AlwaysMeC,
I used the Penguin Cold Caps through September 2020. In their info they said not to cut your hair prior to using the cold cap because your hair follicles are used to the weight of your hair and you're not supposed to do anything (cut, color, use products, etc) until you're 6 months out from your last chemo. I had success and had my hair cut and colored on the 6 month day out. Good luck!
Laurie
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Thanks for the info! That kind of makes sense. I guess cutting it might shock the follicles a little since it has to get used to the weight.
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claire1973- So glad to hear you were able to have everything done in one procedure. I was able to do the same. I still have to go back for grafting but that will have to wait until after chemo is over. Hope you are feeling better and stronger with each passing day!
I just finished my third round of Taxotere and Cytoxan (halfway through) and today was my "wash day." I put a headband in for work this morning and when I went to adjust it just now, seeing how much hair I've lost around my ears and hairline really hit me hard. I am grateful for this process and the amount of hair I still do have, but I guess I'm just feeling a little sad and scared about when I will look and feel normal again. Most days I don't let it get to me, but for some reason today, it is hitting a little harder.
I'm already halfway through, and for that, I am grateful; it's just been a long year since my initial diagnosis and I think I am feeling a little worn down.
Hoping everyone feels strong and healthy this week... sending love your way.
Dawn
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I'm hanging in there...kind of grossed out by all of the pills. I see the NP tomorrow.
I'm curious why the hold out on your hair period is so different for Penguin versus Dignicap? Laurie waited 6 months. Dignicap says to wait '2-3 months'. then it says 'until your normal pre-chemo shedding returns.' I need more exact numbers. it's just how I operate. That is one (of many) thing about this cancer that has been hard for me...having no control over the numbers.
The drains---i can have them removed after 3 consecutive days of 30cc or less. Are my best chances to get there more quickly to walk, to drink water, to NOT walk, etc?....I need a formula and there isn't one. I'm learning to adjust to this but it's hard because I like to control outcomes.
in other news--my teenaged boys BOTH went to school yesterday all day. It is the first time since March 2020.
Sending healthy and strong vibes today!!
Claire
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@claire1973 I don’t recall there being any tricks to the drains but mine were removed pretty quickly, and other than being annoying, I really didn’t have too many issues with them. The drs took two out at a time so I got the first drains removed one week after surgery and the last ones the following week. I hope you are feeling strong and healthy today and able to get outside to get some fresh air!
Friends- I realize it’s still early for me to be thinking of this but I was wondering if anyone who finished cold capping has any recommendations for things they did either during or afterward to help maintain/strengthen their hair and speed regrowth. Other than washing/conditioning twice a week, occasionally putting coconut oil on my ends, and taking biotin, I’m not doing much else and was wondering if I should be.
Hoping everyone is having a great week and feeling healthy,Dawn
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hi Dawn,
I also slept (and still sleep) on a silk pillowcase and use a special gentle shammie style towel for my head instead of a regular towel after wetting it.
I did not use conditioner on cold cap days...only
Shampoo on those mornings I’m using a shampoo (and condition) called Olaplex. Supposedly it strengthens current hair and new growth hair. It’s pricey. I’m not sure if it’s doing anything but I love the smell.
One drain came out today at my check up. WOOHOO! I needed this for my morale.
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So happy to hear that claire1973!!! That’s awesome! You’re on your way! Thank you for the recommendations. I am going to look into them now so I have my post chemo hair care arsenal ready to go when I’m done. Lol...
🙏❤️
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great. and i used the shampoo during the chemo as well...twice a week.
Happy Friday.
I don't want to call it too soon but i MIGHT have a WHISPER of eye brows trying to regrow.
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Hi everyone. I ended up using the Paxman system yesterday during my first infusion. I mistakenly thought it was Dignicap in a previous post. For anyone curious, it felt like a brain freeze at first, but one from the outside. It was definitely not as bad as a slurpee or slushy type of freeze. The system cooled up to the optimal temp, stopped, then cooled again throughout the duration of capping.
If I could offer a tip, it is, DO NOT lie down on the pipe that runs to the base of your head. The first infusion was in a separate room with a bed, so the nurses figured I could relax and lay my head down. After about the first ten minutes I noticed there seemed to be a bruising type of pain on the bottom right side, at the ball of the base. It made me want to sit up and let some warm air onto the spot. My guess is that the initial shock of the cold, and that it hits the base first caused the problem. Once I was up for about five minutes, and adjusted the cap more towards the center, the pain gradually went away. After that, it was easy breezy, if not super long because of the extra 90 minutes I had to cap post chemo.
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I'm almost a year post final Chemo and, my hair is crazy. It's so poofy and wavy. 😂
I think it will get better once I cut it and, get it styled a bit. I've just been putting off a haircut because I wanted to let the new hair grow out more...plus there's probably some psychology to cutting the hair that is holding me back 😁
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I totally get that. I just emailed my hair dresser and asked if she could trim my hair basically without even touching it. Hahaha. She said--well, I've never done that. I will wait too.
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Good morning friends-
So I am one round shy of being done and I have all the questions about when my hair is going to start coming back, when I can start treating and styling it normally again, and any tips/tricks people have for regrowth. I feel like I am losing a bit more after this last round, and sometimes it feels like I have barely any hair left on my head compared to what I had pre-chemo. I would be happy just to see the shedding slow down or stop completely. Once chemo ends, I still plan on only washing and conditioning twice a week, only combing 1-2x a day, still using my head wraps, hats, silk pillowcases, and shower caps ... I know I still have to wash it the "cold-capping" way for a few months... I have stock in Biotin and even though I highly doubt it's doing much right now, I take it daily. With all this, I guess I'm just looking for a timeline of sorts of when you started seeing things returning to normal and if you have any hacks or secrets to share. TYIA!
D
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Mikeysmom925,
I had my last chemo/cold cap in Sept 2020. I used Penguin. As per their instructions I used no products in my hair (only shampoo and conditioner), no hair dryer, no curling/flat iron, no color, no cutting/trimming. I was told I needed to wait 6 months before doing anything. On exactly the 6 month day (March 2021) I had my hair highlighted, cut, started using products again. Everytime I wash my hair I see new hairs (like 1 to 2 inches) popping up. I don't care that my hair looks somewhat frizzy because of different lengths, I'm just happy to have growth! I went yesterday for a cut and highlight. My hairdresser is my friend of 35 plus years (and saw me through my first round of TNBC 15 years ago where I went bald and had partial permanent hair loss from Taxotere which is why I did cold capping this time around). She told me that she thinks that hair is growing back even more than before this last chemo. So maybe the cold cap shocked the hell out of my dead hair follicles! No matter, I feel like I look like "me" again. Good luck and hang in there!
Laurie
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Mikeysmom925,
Hi there,
I had my last chemo on March 25th. I used the Dignicap. I kept up the careful hair treatment for 6-7 weeks. I had my hair trimmed after 6 weeks which is when I started gently using heat styling. I would put the dryer on medium....was still using cold water to wash and only washing once a week. My hair continued to shed until about 8-9 weeks out from the last chemo....then it kind of abruptly stopped shedding. I can see little baby hairs around my hair line and in my part. They are about 1/2 inch long. I *think* they started coming in when my pubic hair started coming back. lol. then one eyebrow and eyelash came back then the other eyebrow.eyelash. the eyebrows happened quickly. This was all at around 8-9 weeks post chemo.
When the shedding stopped abruptly, I started treating it normally again....with heat styling, hot water, products.
Yesterday, I went to a salon that uses lower chemical hair color for my first time coloring it. The color is terrible, but i don't care...i keep telling myself that it was necessary in order to protect the hair a little longer. When this mess washes out after 6 or so weeks, I will go back to my regular colorist and will report back if it wreaks havoc. I asked for light to medium brown. It is almost black. lol. i startle when I see my reflection.
I had a massage last week. She gave me a scalp massage for a few minutes which felt great during...but for the rest of the day my hair follicles hurt! funny. Still sensitive to pressure.
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Camama2 and claire1973-
Thank you so much for sharing your experiences with me. Just hearing them helped so much. I definitely think that part of the process is knowing your body/hair and determining somewhat based on that. That said, my hair is so fragile, broken, and just lifeless looking that I wouldn’t do anything to it even if I could once chemo ended. I just don’t know how much more hair I can watch fall out. I really thought it was slowing down up to and after round 3 but after round 4 it got bad again. Im sure my stressing about it is adding to it though. I guess I will just have to “play it by ear” and hope my hair starts getting rejuvenated earlier than expected. If not, I will continue to practice patience and look longingly at old pictures of my former hair. Lol
Has anyone heard of someone doing extensions after cold capping? And if so did they wait the standard 6 months or were they able to do it sooner?Just the thought of having anything added to or pulling on my hair makes me a little nauseous lol but it’s something I’ve been thinking about for when the time is right.Thank you again everyone for all of your help.
Much love, strength, and healingto you all today and every day,
Dawn
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Do Chemo curls go away or do you just have to keep cutting them out? Since Chemo and the hair growing back I have this 70s/feather/Farah faucet look...I don't like it. I generally have to take a flat iron to it and, I'm just not used to having to do anything to my hair. Before Chemo I would wash my hair, brush it and let it air dry and if was perfect.
I haven't had my hair cut since I started Chemo (cut it to shoulder length). So I guess I can get it cut now and hopefully it will help tame it.
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I've seen through my friends that chemo curls go away. I have 3 friends in my close friend group who lost hair due to chemo. All of them have their hair fully back and it is back to the way it was before. I'm not sure how long it took but probably at least a year. One thing I did that made me feel like I was doing *something* for my hair even if it didn't actually make a difference (lol) is I started using this shampoo:
Olaplex No. 4 Bond Maintenance™ Shampoo
-along with the conditioner. It's pricey but it checks all of the boxes in terms of no chemicals. It smells good and gets a VERY good lather, so you don't have to use more than a dime size amount. One bottle lasted my 3 months.
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My chemo curls went away after 6 months or so. It was kind of fun, since I don't usually have curls, so I liked it, but eventually my hair kind of got back to normal, which is Not Curly... 1 year after chemo, my hair was back to its pre-chemo texture.
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Hi All,
I am trying to determine if doing a cold cap is going to be helpful for me or not. I have fine hair which is very curly (think Annie in texture and only slightly more muted in color). Growing up in the 90s, I would always try to straighten it. In 2014, I finally learned how to love and maintain my curls.
What success have people with fine, curly hair had using either cold cap method? I think doing this is for me, but I don't want to look like the Crypt Keeper in 12 weeks.
And I am scheduled to get my hair colored this Friday, two weeks before my first chemo treatment. Good idea or bad idea? I was kind of thinking I want to feel like myself for two more weeks.
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good morning--well ,I have medium texture, wavy hair that I do color to maintain its reddish blond hue- I did Penguin capping thru 4 treatments of TC--and saved 80 percent of my hair- lost another 5 thru 5 months ongoing shedding-for me it was the right choice to cap--maintaining my appearance was emotionally very beneficial - I would do it again- though yes it was exhausting and a lot of dedication to change caps every 25 minutes for 7 hours each time-my daughter was my partner-and you do need a partner -she kept me going during those final 1-2 hours each time. I have read that chemo that includes Adriamycin tends not to be as successful thru capping and involves 6 treatments generally--the Dignicap at the infusion center does not require a partner nor changing caps and is worn for a shorter time---however have read that it may not be as effective in retaining hair--so is a very personal choice based on your motivation--consider all angles carefully and make the right decision for you--sending hugs--
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Hi! Yes-I've heard the same thing...the chemo type matters more than the hair type for retention. I've also heard the Penguin helps retain more hair.
I had 12 Taxol infusions and used the Dignicap. I have fine hair...not straight--not curly. I kept about 75%, too. There was a lot of adjusting to using it, but TO ME more adjusting if I'd lost all of my hair. I'm glad I did it and would do it again if the chemo was the type that has some success with the cold cap.
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My wife did 6 Taxotere treatments with cold capping. Her last treatment was one week ago. She has been advised of cold capping company that shedding may continue for another 2-3 months.
During the past few months her scalp has become very itchy, flaky and is very dry. She has been advised not to wash with a regular shampoo/conditioner. Do you have any advise on how to address the itchiness and dandruff while we are still trying to preserve hair from shedding?
Thank you
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gamma, I diluted my shampoo with water and apple cider vinegar. The apple cider vinegar helped a lot with itching and dandruff.
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Thanks Jenny, may I ask what shampoo/conditioner do you use? Also do you do this (dilution with water/apple cider) for all washes?
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i used Everyone Balance Shampoo and Conditioner. I remember the flaking and dandruff it wasn't fun. Try using a leave in conditioner to give her hair some nutrients, I used The Honest Company - Honest Conditioning Detangler.
She will continue to shed for a few months after Chemo but it will slow down
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Hi gamma. During cold capping and for a few months after, I used Accure. Once my hair stopped shedding I switched to Pura D'or, for thinning hair, which I like much better. I can't really tell if it made my hair grow better or faster, but I finished chemo almost exactly one year ago and my hair has been back to normal for at least 6 months now. All through cold capping and for at least 2 months after, I only washed once a week and yes, I did dilute it with water and ACV every time. I started this combo after my second infusion and really didn't have a problem with dandruff or itching after that. Hair looking greasy, yes, but no dandruff.
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