Cold Caps Users Past and Present, to Save Hair
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In my case I shed several strands daily (at least 100 or more) with the worst being on hair wash Fridays...ugh. Today has been particularly depressing. When I look in the mirror, it just keeps getting thinner every day. I still have 7 rounds left and fear I don't have enough hair on my head to last that long. Wondering about options at this point. Also curious how long after chemo ends that I will continue to shed.
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Hahahahaha! I can definitely relate to "wow, that chick looks like shit!!" Haha! I have my hair, but it's always dirty, I have almost no eyebrows, my eyelashes are sparse, it's all covered up with more makeup that I usually wear, the makeup is running down my face b/c of these stupid watery eyes, and I have gained 15 pounds. Ugh. And oh yeah, I have foobs that don't even look good. But I still have my sense of humor. Thanks, ladies!
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Ladies,my nurse from Arctic Caps recommended to use Brian Joseph's gel for brows and top eyelashes area.She said to use twice a day so they not suspposed to fall off during chemo.
Anyone used this product? I started right on the first day of my chemo (this Tuesday) and keep doing it.
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I am using the Brian Joseph's gel. I have used it since before starting chemo. Not sure when eyelashes and eyebrows fall out to see if it's working. I am three days post second chemo with four rounds to go
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Trixie - another Minnesotan on this board (angiel) had your AC/T regimen. She said she quit shedding completely at about the midway point of Taxol. Not everyone is the same, of course, but maybe that will give you enough encouragement to continue capping.
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Ok, so I had a photo taken of me at muffins with mom this morning. A mom serving muffins actually said "did you cut your hair? It looks amazing!" I almost fainted from her lack of good hair knowledge! I think she was surprised that it was like 10 inches shorter. I cut it before my first cold cap. Now from this horrific photo it looks like my hair is full and lush. IT IS NOT! But I guess the point is it "looks" like it is. I took a close up of the top last night I will post that too. All I want is one day of NO hair falling out. In the beginning it was just long soft hairs falling out now it's weird wirey black or grey hairs that are short and curly. Just the weirdest damn thing!
I do have a question for all you who have already finished and started regrowth. When you all say you are 2,4,6 weeks post chemo are you starting that date from your very last chemo treatment or for the regular amount of days from chemo treatment ? Say I have last chemo, do I start counting the day after as Post chemo or do I wait the regular 21 days cycle after chemo to start counting?
Thanks!
Keep in mind my hair was down to my butt blond not dyed and straight. It's like a troll dolls hair now !! I was kidding but after thinking about it hat is exactly like my hair now!
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phalia! i get exactly what you mean by troll hair!! OMG that could be me as well, only I have about a third of the amount of hair you have, ill try to post a picture later.
Shower days terrify me.
Good luck on your last treatment phalia and let me know how you are doing, I am exactly one cycle behind you, lets hope we bit make it with a passable head of hair
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Depression rocked me hard this week. Thank God chemo and neulasta pain have subsided and I can work and get shit done. Devastated that my first shed essentially knocked me out of the game. It's been hard explaining this to my six year old and unable to control a few break downs in front of him. If this were a man's problem, cold capping would be a fully funded science by now. Doing chemo after surgery sucks because it makes you still feel sick still All I keep planning are trips and home improvement projects that will last after I'm a goner . facing my in law's with a wig this Sunday is just too much. Going to pull the plug on mothers day, I'd rather work in my yard, teach my son to ride his bike and go for hike in the woods.
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7of9 Im sorry you are going thry this, I can completely understand (I think most of us can) your plans for mothers day sound love
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Hi everyone,
I'm cold capping and 22 days off Round 1 of TC+H. Shedding really intensified the last three days and tonight I found a bald spot on top of my head. Dang. The top of my hair is thin so its hard to cover. Well, my daughter is 29 and her hair in thinning and now we match. They say to not wear hats...dang. Tomorrow is Round 2. I was wondering about when you know the worst is over with the hair loss. Maybe I'll have a natural halo effect and just run around for 12 weeks with a cap on. Haha. Well, I'll have to research part wigs if this gets really bald on top.
I relate about getting used to not washing your hair but I don't think anyone really notices. I do have the urge to just brush it all hard and get the shedding over! I had hair in my coffee to start the day.
Ya'll made me laugh "that chick looks like shit" and "oh, did you cut your hair?" . LOVED the comment about cold capping science being well beyond what it is now if this was impacting males. I had the same thought about breast removals vs penis removals and how the cure would change! Oh well, it is what it is and I really like my male MO.
7/9 I'm so sorry that this happened.
Cody how is it going with you?
Annie
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Viktoyak - I'm using Arctic cold caps and yes, the pain under the chin and to the mouth is bad and then the base of my neck hurt. I'm using padding under the chin. The problem I'm having with their caps is that the bottoms go flat, not rounded like my head and it takes so much pressure to get them rounded. I have a bald spot on top and I'll bet is where the cap didn't hit, maybe - I dunno. It was a lot easier when we got home and we'll be at the lab a shorter time tomorrow. Round 2.
A
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Good morning today makes 17 days since first chemo no significant shedding yet just a bit more than normal hair shed....getting nervous. Next chemo is this coming Wednesday.
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anniekaja11, they do have toppers (not full wig but part that clips to your bangs) . I think that might be solution. I went wig shopping before starting cold caps and even put one on hold (natural hair) they blend very well with mine. But i decided to wait see how will it go. Maybe instead of full wig i will need a topper only and it can be done from this wig into topper.
You scared me now with these bold spot on the top.. .Hope we did all right with Arctic caps and it is not a misstak on my part with choice of capping.
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If I had cut my hair short my hair would look horrendous. Luckily it being long the comb over does wonders. For reals.
7of9 I'm so sorry you're feeling so sad. This cold cap stuff is very stressful:( I guess it does keep our minds off of the other stuff a little bit but when we think it's not working as we'd fantasied it would, that's just a whole other depressing let down. I guess worrying about if our hair will all fall out is ananxiety we wouldn't have had if we'd just gone bald from the beginning. I hope your wrong and your hair stays where it is and you make it all the way❤️
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Annie the shedding has calmed down just a little bit, but the damage is done, i have hair so thin on top of my head that my part looks like its an inch wide, also my right side is super thin, Ive been using toppik and that helps soooooo much, it disguises the baldish part and the gray so its great.
the funny thing is for the most part, as phalia said, people don't notice that i have almost no hair, they just think I have the worst hair ever and that i should probably make an appointment at the salon ASAP.
I have also seen the wig toppers, but how do they work? im afraid if I pin it to my remaining hair it will be too much stress and it will fall too.
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Ladies, I am still to far from where you are only on day 3 but I was wondering if it will be ok to wear a wig to cover remains occasionally? I was thinking for it as a back up plan in canose my hair shed. Also I have short hair and i wonder if it makes a difference with shedding? I believe no
Also can we use blow dryer but on cold Or will it blow all remaining hair in the future....
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Love the comment about the fantasy of cold caps. I imagine that in 10 years, they will have great tech for this where you go to your infusion, pop the cap that they form to your scalp and cool via a machine next to you chair. We are the woman they will talk about who pushed this technology forward. But I do wish that I had more 'warning' about the reality of cold capping. The pictures of the models with their fabulous hair blowing in the wind isn't quite the reality. They should put a picture of a troll on the brochure. Ha! This morning, my hair is so messy, the bald spot doesn't even show up much in the photo I tried to take lol.
Well wish me good things, off for round 2. Should be easier cold capping today because we have our system down and my hubby will not get so stressed out. We'll be at the lab a shorter amount of time and then home to the couch and Transformers movie.
thanks for the tip about that product for eyebrows and lashes, I'm going to try it to see if it can help at this point anyways..
Cody - Oh good, I'm glad. I'll take a look at that product.
viktoyak - I'm sorry that I scared you! Don't be scared about it. Thin with spots is fine. Troll hair works! If it falls, it falls. On the caps, what we are working on is trying to shape it a bit before we put it on because the bottoms get flat. We tried to do that when we put the dry ice in the caps but as soon as you put it into the cooler onto the dry ice, it flattens again. As it cools when its on your head, just keep smashing it down onto your scalp and keep those stupid straps tight even though it hurts. Hope that helps.
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Anniekaja11, thank you and good luck today, let us know how it went. I will use your recommendations for sure and yes we already mastered a system last time it should be easier.My second round on Tuesday. I do weekly Taxol.So I am far from shedding yet.
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7of9, I think your plans to spend Mother's Day outside doing family activities sound really nice as opposed to hanging out with the in-laws :-) It's your day and you should get to decide how you want to spend it!
I'm sorry you're so stressed about the capping and hair loss. I really hope that you've seen the worst of the shedding and can continue on till the end of treatment.
I'm so sorry you're going through this! I wish I could reach out and give you a big hug. Enjoy the love of your sweet family this weekend
Anniekaja, Good luck with your treatment today! It will seem a lot easier today than it did the first time, I promise!
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Annie the caps I use are a silicone cap filled with cooling liquid that is conected to a machine that cools it! No need to change caps or guess the temperature as it has sensors, they are called dignicaps and have been used outside of the US for years, they are way less stressful to use, but the results are the same regarding the shedding, troll head all the way
I still have eyebrows and eye lashes, when are they supposed to go? (Afraid to ask
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7of9 -- I know what you mean about starting chemo after surgery. I had neoadjuvant Herceptin and Perjeta, then double mastectomy, and now Taxotere/Herceptin/Perjeta. I started chemo 30 days after my surgery. The first couple were pretty hard. Then the middle ones got better. I really think I was still recovering from the surgery. Now the 6th one is hard too, but I'm on the upswing. But I think I had worse fatigue early on b/c of surgery.
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PatinMN- I have had the opportunity to both speak and email with AngieL about her experiences. I got my caps through Susan who referred me to Angie due to our similar experiences. Did you work with Susan as well?? With that said she never mentioned having stopped shedding halfway into Taxol....rather, I thought she mentioned she continued to shed even several weeks PFC. I guess only time will tell for certain....
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Trixie - yes, I worked with Susan. She is great! I may be mistaken about Angie's shedding experience, but I thought she had said the shedding stopped (or at least slowed way down) during taxol. The AC is hardest on hair, weekly taxol not so much. But probably the AC effects linger on.
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Thanks for the support gang. Here's some pics of where I am, starting Round 2 TC+H, day 23. So we can watch my troll transformation.
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Trixie and patinmnI also worked with Susan. Her daughter came up north to cap me for the first time and training since Susan was on vacation. She is so kind. I have finished my second round. My clinic doesn't have freezers so we head to the cities on Sundays before my Monday treatment to get dry ice. Small world...
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jgab- my infusions are on Tues and I drive to St Paul every Monday to get my dry ice. Curious where you get your ice on a Sunday. Wish I didn't have to drive so far but they give me Susan's discount.
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Phaila, my capping "coach" had hair growing back ( she went bald as she did not cap the first time but did cap chemo 2 - 8) by the time of her first follow up and both her nurse and doctor couldn't get over how much regrowth she had. Not sure if it started regrowing while capping but I did hear from others at my hospital that the capping helps it come back almost 2x as fast (therapist's words not mine!)
On a lighter note than my earlier miserable post about my horrible shed - my nails look GREAT. I only used the therapy gloves and booties a minute or two before starting the taxotere and then I stop pretty quick after. My nails are pretty crappy to begin with but since I have been taking extra care to moisturize, clean and keep a clear coat on...they actually look better than before chemo. Oh and NO neuropathy. Guess I should count my blessings after all....still my hair sucks...anemic troll doll!!!
On that note, have good night and weekend y'all. Go Nyquist (in the Kentucky Derby tomorrow).
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7 of 9 You must teach me about nail care...that is super interesting about hair regrowth rates with cold capping. YES!
Today cold capping went soon much better! Last time they had a square shape coming out of the cooler and it took so much pressure to use the straps to shape it to my head. This time, my husband would sit on the caps when he took them out of the cooler and then he'd put them on his head to shape them until the Temp came up and it was ready for me. I also took Tylenol. Very pleased, feels doable now. I've got a cute picture of him in a cold cap and I'll post it tomorrow.
My round 2 went great, easier and I feel much better with some changes I made and my MO added. Finished with week 3/15. and Round 2/6. YAY!
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I love the "troll hair" analogy. It fits me perfect. Bald spot on top and dry, crispy hair hanging down. Some poor soul that hasn't seen me since high school asked me out. Won't he be in for a shock when he sees eyebrow-less me with troll hair. I bet he gets a phone call during lunch and has to leave for an emergency.
I pretty much feel like shit too. I went in today just for IV fluids because I'm dehydrated and no amount of drinking can catch me up. Something about that 3rd chemo suddenly made me hit a wall. And boy, am I lovin' these hot flashes I'm having at night that keep me from getting restful sleep. Does anyone else have a stomach that looks like they need to be admitted to a maternity ward? I do. I have no idea why.
And since I felt bad all day I felt the need to make other people feel bad too so I finally went off on my 2 older brothers for not having the decency to even text me a "how are you" since my diagnosis. My family is so weird. I did hear back from one brother and at least he had the smarts not to give me excuses. He owned it and apologized and said he'll do better. I respect that.
Carry on ladies. Your posts made me laugh tonight!
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Phalia, you and the rest of the Class of '16 Cappers are a hoot :-D
How quickly hair trends come and go. My Class of '15 was all about the "crack ho" look with our unwashed locks and dark roots. That's sooo yesterday! I'm thinking "troll hair" might just be an upgrade, lol!
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