Cold Caps Users Past and Present, to Save Hair
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Hi everyone -
I have a question - when do you "know" that your hair isn't going to all fall out? I'm 30 days post the start of chemo - Taxotere, Carbo + Herceptin. After Round 2 last Friday, my troll hair "sprung" and I had more thinning up top and shedding all around. Still shedding everyday when I use the big comb. I'm just wondering what to expect and when to feel like it "worked?"
Tx
A
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A,
I'm the same as you....not knowing if this is going to work. I'm Day 17 of Round 1 and haven't started shedding yet, but keep on waiting for the first big one. Adriamycin is so harsh that the hair on my legs stopped growing a week ago and I think I'm minus some eyebrows already. Saturday is my wash day, but am waiting til Sunday if I can as we are going out of town for an AT hiker event and I'm afraid all my hair is going to start falling out when I'm there. I know that sounds crazy, but this entire experience can cause some crazy thoughts.
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annie i was shedding like crazy, and then on day 33 it slowed down,its been like that now, and im waiting to see if the effects of rounf 2 will be as strong as round 1. I also dont know if cold capping is working or not
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Anne- Ok, so I am just now starting to realize that there's no way I will lose ALL my hair. The first shed had me freaking out and a good 2 weeks after that. My hair is thin as all crap but I now know I won't be bald. I, luckily, don't have any bald spots, and only having cut my hair to shoulders my hair is long enough to cover ANY uber thin spots.
If you go back and read my posts you will see that I freaked out way more then anyone on this thread! I was a nut case. I lost more then 50% my first shed. That was really my only true "shed" since then it's just been hair falling out but nothing like that first time. And I got sick of the rules. Every time I wash my hair I use my real shampoo and conditioner. Actually, since the cradle cap, ive been using head and shoulders shampoo and then Pantene conditioner, AND I get it on the roots, AND I use shower temp water, AND I brush it (gently), AND I wash it every other day. Doing all those things has NOT made more hair fall out.
I've lost probably 65% of my hair. I think I just finally got used to having thin hair. It had felt really surreal and scarily unnatural but now I'm used to it. I guess being used to it has taken some of the fear away.
You all will be A O K! Like I was told, if you got hair after treatment 2 then you most likely WILL NOTLose your hair!
It'll be ok:)❤️❤️❤️👍🌻
Ps. We all fell for those photos. But I wouldn't change doing it
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Thanks everyone - I just wish they had put some realistic photos on the brochure instead of the hair models with their gorgeous hair blowing from the fans...they could do "troll woman" "thin hair woman" "bald spots on top but looks good in a cap woman" Yes, I guess the point is minimizing complete hair loss and maximizing regrowth. I just had unrealistic expectations but I do notice the chemosabes that I run with from the April group who are not cold capping are all bald and it is very very traumatic for them. They get used to dealing with it but I'm also afraid of permanent hair loss with the Taxotere so I'm going to keep going. I think at this point, I've lost maybe 30 to 40% of my hair but other than the top with the bald spot and the thinning up top, I look fine. Today I just went without anything on my head - I felt a bit self-conscious about staff seeing my spot but I figured if men can do it, I can do it. No one pointed at me or gagged
.hikerchic - for me, the shedding was gradual and seemed to increase at day 21 and 22. Then after round 2, I noticed a lot more hair loss, the bald spot happened and my hair texture changed. I bet no one will notice your shedding, just comb it with a big wide toothed comb in the AM and at PM and try to not play with it during the day. I noticed that I have stopped touching my hair during the day
phalia - I remember! Your first shed like just dropped it. Thanks! you are right. Okay, its after round 2 and I have hair. I'm 4 weeks past the start of chemo today. I still have hair. Its working. I think I'd be bald by now without the cold capping. No one else has hair...just some wisps or tuffs but all the other ladies are naked headed.
cody - its working! I'm excited to get the Toppix...I accidentally ordered medium blonde so now I have to wait another day to get the medium brown. I got a cute cotton newsboy cap to wear to work tomorrow with a T-shirt. It'll dress it up and I can keep my spot undercover.
My hair is thinner but no one can tell if I have a cap on or if you look at me straight on. I'll post some pics this weekend. That might be helpful for all of us to check our fears and phobias.
Hugs
A
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just wear 5 inch heels
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Ladies, if you make it past the first 21 days of your first treatment and still have hair, the odds are very good that you will keep it! As long as the shedding is diffuse, and not coming out in clumps if you pull on it, you are going to be fine.
I went through exactly the same angst of uncertainty that y'all are experiencing. Hair nightmares, worrying about going away for the weekend and it choosing that time to fall out, everything you're sharing here, I was exactly the same. Only not half as outspoken or as funny as Phalia ;-)
Somewhere between the 2nd and 3rd treatment I let go of the worrying and began to trust the process. I had the one big shed at the beginning, and then shed gradually through the rest of treatment and the weeks beyond. Yeah, my hair thinned, yeah, I hated the temporary crack ho look, that was pretty depressing, but nothing as depressing as going bald would have been. The good news that the shedding completely stops at some point. And you will be very excited when you realize that the hair you did lose is coming back! You'll love feeling those tiny stubbles hiding out all over your head amongst the troll hair.
So...Happy Friday, all you trolls and ho's
Embrace the grunge look, and keep on rocking those treatments! You'll be done before you know it!
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Wildflower ~ I am sitting here at the MO getting ready for an iron infusion and smiling like a total goober after reading your post! Thank you x 10000 for sharing your experience and making me feel not so crazy!!
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I had a lot of hair in my comb out this morning but then I realized that I didn't comb it last night. I'm sporting this cute newsboy cap this morning.
Phalia Elevator shoes would work might complete the look!
Hiker chic - I'm the same!!!!
Wildflower Thank you!!! So extremely helpful!
Let's all remember to come back when we are at the stubble phase and encourage the newbies! Its sooooo helpful to hear from an ex-cold capper!
A
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I want to thank you ladies for your optimistic posts this morning...they really did help my mood and attitude. I have to admit I was beyond angry this morning. Friday is my hair wash day and as always it was a complete nightmare. My hair is sooo ungodly thin. I just don't know how I will have any left after six more rounds not to mention I will likely continue to shed for awhile post chemo. Anyway, I too, was angry and feeling mislead by PPC that I would have better results. So far I am into it for $2500 (not including the price of dry ice) with one more month to go. I hate to pull the plug after having invested that much but how sad am I going to feel after another month and $3100 and not having enough hair to have made it worth all the work...ugh. I just don't know what to do and I hate that feeling.
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Even if you lose a lot of hair, keep going. Once hair starts growing when you are done the scalp will fill in really quickly. It will give you a jump start on growing hair than starting from being completely bald. Hang in there!!!
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Girls, you are so funny. I love this group!
I am terrified . I only had 2 weekly Taxols ,last one this Tuesday, what does it make day 11? I had my wash day today (weekly) since I do weekly Taxol i can only do wash Fridays. So, today after the wash i can see some loose hair not much maybe it is usual what i get after wash i don't know but I am getting so scared and paranoid. Every time i touch my hair it seems there one loose hair comes up. I have short hair so they come out just short. Plus my scalp is very itchy... Is it beginning of the end? Is it my imagination? I even had a dream today that i am loosing all my hair and i didn't get a wig yet. I have a wig reserved at wig place but it needs a proper cut it and for that it requires time and appointment. I just didn't want to do it before i know for sure if i need it . Should i go get it now? What happening?
I am doing Arctic Cold caps and i did follow all instructions provided....
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Victoryak, some shedding is normal even when not doing chemo, and remember you're shedding 7 days worth of hair if you're only washing once a week. You should do fine on weekly taxol, as long as your caps fit well and have good contact with your scalp and are cold enough. Itchy scalp is normal. Tingly scalp is normal. Tender scalp is normal. I had all those and kept my hair! People on weekly taxol who don't cold cap seem to lose hair very gradually, and much later than day 11. Try not to worry!
Trixie, I hope your shedding slows soon! As others have said, at least with capping your hair regrowth will start to fill in much sooner than for those who have to start from zero hair!
To all: it helps everyone - past cappers trying to help, and current cappers looking for help/advice - if you put your chemo regimen in your tag line.
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PatinMN, thank you! I feel much better now. Even less itchy scalp!
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I am only on Day 17 (TCH) and shedding like crazy, already have a bald spot behind my right ear! Does this mean that the capping is not working?
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it really does help so much to hear about the past cappers experiences, thank you to all, your words are better than valium!
phalia I do remember you freaking out!!
my worst shed so far was between days 20 and 34, it has since diminished a lot, still I absolutely need to use toppik or wear a scarf to feel confortable when I go out (I usually use both things)
the protocol with the dignicaps is a lot easier than with the penguin caps, Im allowed to wash every 2 days and I can use any natural shampoo and also conditioner on the ends, they even let me use chemical free color to touch up my roots, which Ive been to afraid to try.
but for now I think Im going to relax a bit about all this, otherwise whats the point on using the caps if they bring more stress than confort, whatever hair I lost will grow back and whatever I have left Im going to try to enjoy, so Ill embrace the french peasant troll look with my scarves and voila!
have a nice weekend everyone! xo
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Cody_Mx, I like the idea of french peasant look with the scarf..lol I think it will be my next step... My short hair if they survive sheds will need a scarf or something to make them at least a bit cooler looking. I think its much easier get away without any products and unwashed hair with long hair then short... So I will be thinking of French Peasant image... the short hair version.
Now, girls, what do we do with sweaty hair? Instruction for my Cold caps tells me not to sweat.. How do I do it? I do exercise daily. Do any of you girls exersise ? Instructions from Cold caps i guess expect us to be couch potatoes with cold caps on? I don't know maybe it didn't hit me yet since i only did 2 weekly taxols but I still trying to be active as possible....
How can we not sweat its almost summer! I just went to spin class and of course my head was sweating. I had mini travel fan next to me and tried to blow air on my hair.. Probably looked ridiculous like some crazy woman with travel fan on a bike blowing air into hair... . Are we even allowed to use those fans? Or will they blew my hair off?
Please share about your sweaty hair experiences!
Hugs,
Vicky
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Viktoryak: I am using penguin caps. Day 18 and no shedding yet. I keep waking up every morning waiting for it to start. But...only day 18 so I am still in the early phase.
I exercise almost an hour a day. Even if I don't feel like it, I have made it a priority. It is one of the things we have control over to help our bodies in this battle.
That said...I have changed what I do. I now ride the exercise bike at home with a fan on my head (low speed) and throw a bag of frozen corn to cool down as quick as possible. I do yoga at home because the studio is too hot. I also get out and hike much earlier when it's still cool and the sun isn't overhead. It's not my normal routine but I am working so hard at this, I don't want to throw it all away.
Penguin states it's ok to exercise, just try to be "reasonable" about it, what ever that means.
I am also trying not to worry too much about it. Trying to be zen about it. Because just worry and stress can make your hair fall out!
Hope this helps.
Xo
Susa
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Heidi: read through the threads. It's working! Hang in there!
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Forgot to ask , I developed a pimply rush on my forehead I believe from the pantyliner I put on it before cold capping. ( I do Arctic Caps).Since i do cold caps every week it is not enough time to heal. Any suggestions what to do to get rid of the rush or prevent it? Anyone had something similar? I am going for chemo on Tuesday.. .Only have 2 days to heal:(
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Vicki...It sounds like you might have been allergic to the adhesive in the panty liner. I use moleskin but only cut the backing away at the top 1/4 inch so it is easier to take off. I had a friend who used medical tape to put the moleskin in place. Easier on the skin. :-)
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SusanBP i actually use both Moleskin on top of pantyliner. That's instruction from A.Cold caps.
I am not sure if it is allergic reaction. I also have a few pimples on my face after last Taxol i think it is probably combination of both. Taxol plus sensitive skin. I had allergy on med tape before so it will not work
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viktoryak,
I had chemo during the hottest part of the summer. During that time I went on lots of day long motorcycle rides wearing a tight, full face motorcycle helmet along with a bandana underneath. My head was dripping wet with sweat every single time I took off the helmet. I also wore baseball caps from time to time, and sweated in them too. I don't know if I would ultimately have shed a little less if I hadn't bent the rules, but I never got any bald spots and I never noticed any loose hair in the helmet.
I did, however, abide by the rules about no hot blow drying ( mostly) but even then I used warm air to finish styling.
Everyone has to choose their level of comfort if they want to stretch the rules. My purpose is to share my own experience hoping it will help relieve the gals who are stressing out about heat and sweaty hair :-)
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I exercise a lot and I also get night sweats which I don't have any control over. I don't think my head getting hot has anything to do with the success or failure of cold capping. Honestly I don't understand a lot of the rules they have so I pick the reasonable ones and follow those. So far I've been just fine. I'm just looking forward to the 19th because that is my last chemo and the last time I have to get 80 pounds of dry ice and freeze my head for 7 hours!
I think my hair is troll hair because it's been frozen so much! That can't be good for it.
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Runner, totally agree with you about the crispy hair from being frozen. Adding that to our hair not getting any nutrients (did it ever? I'm truly clueless about all that ) and it's just the thinnest most dried out wirey crap top. My last chemo is the 20th. It was supposed to be the 19th like yours, but I changed it so I could be at field day for my 3rd grade son, Lachlan. At least now I know I can attend it hat, scarf, and wig free!! Woohoo! His school is run by women. Out of a staff of like 100, I think there are maybe 5 men ! How in the world are they all still alive? You should hear the chit chat in the volunteer room! It's mental😜 Anyhow I dreaded going to field day bald. Actually I know i wouldn't have gone. And I've worried about it since day 1. At least I can stop worrying about if I'll have hair for it and I'll get to spend it with my son❤️
So I accidentally saw the top of my head tonight. Eeek! All I can say is thank goodness I'm tall! It's a scary sight
Head of hell
Have long hair that hid it so well I didn't even know how bad it was until tonight. It is was way more crispy and brittle today too. My head tingled all day so I think this is the shedding day after chemo.
Eating at our "Rail trail Cafe" after the train depot. These places are all in a cute little town named New Freedom, pa. It's sort of a Baltimore suburb. Actually as we were leaving this place I saw a woman who had about 1/3 as much hair as me. And in the real world (that doesn't involve cancer) I wouldn't have given her hair a second thought. I'm just hyper sensitive to all around me. But I'm sure no one is looking at me like I think they are.
Visited our "Steam into history" store. Our town bought a 2 Million dollar exact replica steam engine. It is gorgeous!
Killer clouds. Figures, rights as we take the dogs to the park
Sun came out fierce after the rain
At the wig store right before I got cold caps. We were yelled at in Chinese for Lachlan trying on the wigs
Sorry I got picture happy;)
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Hi All,
I haven't posted in ages, but it's surely time for an update. This will be the Reader's Digest Condensed version. I hope it helps anyone else who thinks of bailing on the caps.
Mid - Nov - diagnosed
Dec 1 - surgery and reconstruction
Dec 29 - start chemo (1st of 4 AC); almost quit caps Day 1 as our thermometer was malfunctioning and reading -32 when it was actually more like -38
About week 4 after initial chemo, my hair started to shed pretty evenly all over. Over several weeks, it continued to shed until about 30% was gone. Still a win in my book as 70% is way higher than the 0% I would have had without the caps.
After the 4 AC treatments, I was scheduled for 12 weekly Taxols. The shedding had slowed with the last AC & did not restart with 1st Taxol. After 2nd Taxol, it started to shed again. (Well shoot!) I lost another maybe 30%, but that still left me with 40% so I started wearing a baseball cap and calling it my starter hair as it was a head start on what would grow back. It was shedding evenly again so that was a plus. My hair is in a pixie cut so all the shedding showed. Definitely, a minus. At some point around this time, I did lose all of my eyelashes and most of my eyebrows. (I considered quitting the caps again as it was still shedding and I only had 40% left. I was trying to decided how much more I could lose and still say the money, time, and cold were worth it. I decided to keep going on a week by week basis. So glad I didn't stop!)
Early April - I'm just checking off weekly Taxols when I realize my hair has stopped shedding. (Yea!)
Mid to late April - I realize my hair is growing back in! My eyebrows and eye lashes have also just barely started to grow back, and they are growing much more slowly and much more sporadically. Bottom line though - my hair is coming back! (Yippee!)
This past week - I am back to feeling like a baseball cap is not required. In fact, I did not wear one to my 4th son's high school graduation party on Friday night. This week, I'm going to get my hair trimmed. The hair I kept has continued to grow and is several inches longer than the new hair. I still have 2 more Taxols - this Tuesday and next Tuesday.
I am emphatically declaring caps a win for me. I would have had no hair since the 2nd week of January if I had not capped. When I look at photos of women who didn't cap and had to start over from scratch, my hair really best matches the photos they typically post 4 to 5 months after they end chemo. I had that much hair with 4 chemos left.
Hang in with the caps!
Leesa T
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Hi ladies,
I am new to this thread. I had chemo 2 years ago and lost all my hair(did not cold cap) but have recently diagnosed with mets so will be starting Taxotere, Herceptin and Perjeta. I want to cold cap this time as loosing my hair was one of the worst parts of this for me. My hair has just barely reached my shoulders(where I am starting to like it) and I have to start chemo again....ugh!!
My question to all of you is:
Which cold cap did u use, how many did u need to buy and did it work???
I have read about penguin caps which seem to have great results but WOW the price is crazy!!! I am looking at 18 weeks of treatment.
Thank you
Kathy
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I used cold caps three years ago with great success. Lost about 25-30% of my hair in total. That may sound like a lot, but it was an all over thinning with no particular bald spots so it wasn't noticeable to most except myself and my hairdresser. I used Penguin so I'm biased towards that brand. At the time I used cold caps, most on this board were using Penguin with the occasional ElastoGel user. Now there seems to be a lot more ElastoGel users with varying degrees of success.
It's important to understand that they are the only two brands out there using the dry ice method. If you're not renting from Penguin, no matter which other company you use, you are getting ElastoGels. The main difference between the two is that Penguin has velcro straps attached that you use to tighten the cap and conform it to the shape of your head so it's easier to get a good snug fit. ElastoGel is more of a one size fits all cap. If they fit your head well, you will do fine. If they don't, you may end up with gaps leading to bald spots, particularly on the crown. It really depends on the shape of your head.
Of course, the one big disadvantage to Penguin is the price. There have been several women who received financial assistance from the Cold Cap Assistance Project. They're a nonprofit based in Texas you can find with a quick google search. It's worth checking out.
Good luck to those in the middle of it. For me, it was stressful but definitely worth it.
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Thought I would pop in with an update. Tomorrow will be one week post 2nd TC or 28 days past the start of chemo for me. My hair is still shedding like crazy but after working from home last week during my chemo week and coming into the office today, everyone was really surprised to see that I still had not lost any hair. To me I definitely notice a lot of thinning but for most people they aren't noticing at all. Even the ones who know I am capping and are looking with a critical eye have said they have not noticed anything (or are too nice to say so, lol). I definitely have what I would call profuse shedding and after my Saturday wash thought I was going to be bald, but once my hair dried it puffed back up and no bald patches or anything were visible.
Now my question to the experienced cappers, when can I start to relax and feel like this is working? I am concerned that if I continue to shed at this pace I will be bald before the end - sounds like it might settle down at some point in the next 10 days or so? Is washing once a week non-chemo weeks not often enough or is that okay?
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Kthielen -- I had great success with Penguin Cold Caps. If you order from them, they will tell you how many you need. It depends on long your chemo day is. I got 14 and used 12 each time.
Yes, the quoted price is a lot. But I asked for and got "discounted" caps. It was something in the $300 range per month instead of the $500 range per month. Also, check out this assistance program. I've heard of people getting help there.
Good luck!
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