Cold Caps Users Past and Present, to Save Hair
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ok ... had my first post chemo hair wash today. My roots still feel dirty and i feel like no matter how gentle I was, I was being rough! Am i alone? I haven't done any at home cold caps yet. My scalp has been too tender. Did everyone do extra time at home? THanks for the hat postings. That helped!
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LivCar:
Mine feels dirty still after washing too and guess we'll get used to that. I do the caps in between but have been doing them mainly the first 5 or so days right after chemo...I think the suggestion is several times per week but my thinking was that it was disturbing the hair more than necessary so, for now, I'm sticking to just those days.
My BIG hair loss was the first washing after my first treatment but I made the mistake on going for a long speed walk and it was a warm day and my hair got so matted from the sweat. Made sure not to repeat that the second time though and so far, so good. #3 coming up for me week after next.
Good luck, Arlene
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Hi LivCar~ I so remember those first weeks after my first chemo...sort of relieved b/c my side effects were minimal and I had used the caps...my scalp hurt really bad and I did get a little frost bite...so I didn't use the caps out of the freezer until the second week. And my hair was icky...it was getting used to no washing. Yours will adjust...and sure you were gentle enough....I am a jogger..I wore baseball hats(the thin Nike caps) through chemo...I talked to Frank about it...it's not just the pulling but the heat...so I would wet my hair with cold water and take it off immediately when back home or got to my car....no I'll effects...
Susan~I started when there was 30 pages and so agree with you...the cap community has so grown....and so many success stories too! ...btw great avatar...now I know what you look like!0 -
Livcar- hey girl, i sent you a couple pm's
ladies, im proud to say i am now working with Frank Fronda and PCC, hehe
susan- i cant believe how much we have grown since my first post, nice to see you
its been a year for me. Wow!!Chey
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Hi everyone,
18 days post second treatment, "let the shedding begin", lost a lot in the shower this morning, hoping I can get through this shedding and 2 more! My sister whom I have not seen since my diagnosis thought I still had more hair than she did. I "had" really thick hair to begin with so to me it feels and looks really thin. Still staying positive, every day I wake up with hair I am grateful :}
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Hey LeeAnn:
I gotta believe it is going to hang on especially since you only have 2 more TXs...I have 4 more and I'm thinking really positive. I'm 10 days post #2 and just normal shedding each day but with 4 remaining who knows. Tomorrow will be a shampoo day (with the new Intelligent Nutrients products) and hoping they make a big difference.
I'm drinking Carnation Instant Breakfast to load the protein and also the electrolyes and my heart palpitations have settled down. Hooray!
Have a wonderful Sunday everyone!
Arlene
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Hey ladies...just popping in with an update. I have my last TC of 4 this coming Wed. Hair is still there. Friends came over last night and said it looked good...could not tell. I know them well enough that they would tell me the truth so that made me feel good. They also said "you still have all of your lashes and brows"...I proudly said "yes" and neglected to tell them I had to pencil in some thin areas on brows...they couldn't tell so I just let it go! That made me feel good.
I will try to post a photo next weekend after my wash and PFC...yes, I actually said "PFC". I can't believe that will happen this week!
Oh and a styling tip....I have frizzy hair and I hate that! I air dry for a while or in a towel for a while before styling. I comb through hair after washing/conditioning/rinsing. I start from bottom and get all tangles out gently and then finally use a pick to start gently a the top and comb straight down through hair to kind of "straighten" it. Once combed kind of straight I use a medium sized towel (about 12" x 20" or so) and place it on my head. I the gently pull the two towel ends together under my hair (I have long hair) in the back and secure the towel with a large pincher type hair clip without getting any hair in the clip...just the towel. I let hair dry in towel for an hour or so - it keeps the top part smoother. Once I am ready to style I then take the towel off and use a large round brush with few/short bristles on it and gently wrap a small section of hair around it. I use the drying on cool and hold it up over my head so it blows down towards the top part of my hair and the brush. I hold for a few minutes and repeat on another section. Once done - hair looks frizzy. I smoothen the ends with Morcoccon Oil by Organix which is chemical free and organic. Worked well for me. I only use a tiny, tiny amount - you won't need much. It really smoothed my frizzy look. That's the best I can come up with these days........
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Hey girls
,just a little encouragement,
it's gonna work! hehe some are past the second treatment,whether it be TC or AC, your there!! try not to stress, I had 16 total, AC x4 and Taxol x12, and i still have hair, i finished chemo last November, where i did shed(,mind you i waited two weeks after every 16 treatments and 8 hours in caps,in hopes my hair was gonna hang on) it shed that entire time, i was left with a full head but cut my length cause you could see the thin in the length when it went down my back, once i cut it above the shoulders, you could not tell, It does work!!! and you will be thrilled..i know its cold and unbearably at times, i made it through 16, 8 hours each..and am so glad!! your almost there.. the creepy crawling does go away, for me, i did blow dry and used my straightener when needed, where all my shedding was,it has been growing back like crazy, i have about 4 inches of new growth under my long growth, its funny.. i noticed my hair kept growing through out chemo, i could see the difference in color..
it's gonna be great!! i put some real hair extensions for a lil more length, i was thick, but i dont like me in short hair above the shoulders, in my pic you can see..Im so excited for all of you, if your hair is thinning a lot, towards the end, it's ok to change your temp a bit, you dont have as much hair for the cold get through to put those follicles to sleep at that point, you dont want to burn your scalp, i went up, 2 degrees warmer, you can also use a thin piece of gauze if you wish..
I used Latesse on my eyebrows and lashes, i lost no eyebrows at all, my lashes thinned a bit but continued to grow though out..
Soon this will be over and your gonna look back like i am, and say "its been 6 months already? "
love chey
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I went back and looked, i came in on page 18, lol and now we are at 100 thank you Can-d 0
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Oh, so good to hear your story, Chey! I am 7 days PFC and looked in the mirror and saw my hair in the back and thought - "I have to get this hair trimmed!" It looks so thin and stringy, since I normally do not have it this long. I think I am going to get a bit cut off tomorrow from the back and the bangs. It was great to hear (for you) that it looked thicker, b/c I keep wondering if it will look better or worse. Wish me luck!
Annie
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Chey: Thanks for the information. It sure helps a lot. My hair is so thin in the back and that is after only 2 treatments so I do worry. I use the curling iron on my bangs or I'd be a real mess. Haven't used it anywhere else though. So you trimmed your hair during chemo? I thought if I could trim the ends that it wouldn't look so thin especially if I can go shoulder length.
Thanks, Arlene
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Hi All:
I think the reason some of you are shedding so much is that you have so much hair. I had very short hair to start, now it is much longer, and I didn't shed that much. All of my hair fit under the cap, and I think that is part of the reason for less shedding. I think if you have very long hair you should cut it a bit before you even start the caps, that way more will be under the cap. Anyway, it will work no matter how much you shed, you will come out with a full head of hair. Perhaps it will not be as thick, but it will not be noticeable to anyone but you.
By the way, my husband who has been balding for the last 10 years or so, says that his head or scalp hurts before his hair falls out. So it isn't from the caps, it is the follicles dying and the hair falling out. I feel it from time to time as well. Keep looking forward and soon you will be there!Keep Positive!
Nancy
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Want to put another perspective out there... your scalp likely does hurt b/c of the caps.. and has little connection with hair loss while using the caps. I was freaked out when my scalp hurt horribly the few days after my first treatment -- thought for sure it was an omen my hair would fall out... talked to many and Frank about it.. I had no shedding until about Day 26-28 (5-6 days after my second treatment) and none said it had to do with hair loss..
While many women who do lose their hair during chemo -- experence "the pain" keep positive talks about .. the pain, tingling, crawling has a lot to do with freezing your scalp, the scales that form and no washing.
Not trying to disagree~ just trying to put another perspective out there....
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Thanks Lynn for another perspective. I do notice the dirtier my hair gets, the more tingling and itching I have so what you are saying makes sense.
Always great to see another side of things.
Arlene
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Hilarious! i'm so glad someone else mentioned the 'crawling'. Thought i was going crazy. Arlene - your posts are so much more positive then when you started. you're giving me hope! I'm one behind you and I'm obsessing about bangs too. i've been putting in velcro rollers with my dryer on a cool setting. it gives it a bit of volume. What I wouldn't give for a squirt of hairspray!!!
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LOL at "what I wouldn't give for a squirt of hairspray"......too funny but I can relate. I don't have the bang issue as my hair is long...my bangs are past my chin. I do have flat hair though. What I wouldn't give just to back comb a bit on top so it is not so flat.........sigh.
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keeppositive: when I met Frank last June, he said that those with thick, dark hair shed more (they have more hair to shed) than those with fine, blonde hair. He also mentioned that carnivores retain more hair than vegetarians. Go figure! ultimately, the vast majority of us with lots of thick hair still have full coverage with PCCs when all is said and done.
It will be interesting to see of the clinical studies capture this info at all.
Cheers,
Susan
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Anyone with fine thin hair using cold caps? How did you fare?
My hair is not one of my best features, but I wish to keep what I have. With all the stress of dx I have already been shedding. My hair also breaks easily etc. It is oily within a day and I need to wash and style every day.
I am wondering how my hair would fare with cold caps. My ponytail is already requires 4 wraps of a coated elastic band just to keep the pony tail snug, if that provides any indication as to how thin it is. So I am wondering if cold caps will help my hair.
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Good news -- had my first, 6-month mamo today. It is clear. What a year it has been. I was diagnosed almost exactly 1 year ago. Had 4 rounds of chemo, lumpectomy, and 38 radiation treatsments and I still have hair! Thank you PCC.
Colleen
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Yeah Colleen!!!!!!!!!!
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Question - does anyone have the recommendations on hair color from Frank and his team?
Thx!
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Debrox - sorry, I have thick hair.....
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LmFlynn .... what kind of treatment are you getting? we seem to have a similar diagnosis. i'm wondering if we're on the same chemo. I'm on AC/Taxol. only one treatment so no hairloss yet. I just have dirty limp hair right now! i don't know if i'll be able to stand this once a week wash! yuck! oh ... roots are coming in nice and fast!
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Hi LivCar~ I'm 16 weeks PFC, finished in January. I had TCx4....my hair grew almost 2 inches while using the PCCs. Finally feeling back to a new normal!....
About thin hair...mine is extremely thin and mostly oily.....it does adjust and truly no one can tell with my hair.....it is thinner, and I desperately need a highlight, but it's great to have hair!!0 -
So I am considering the use of PCC. My doctors office does not have them so I would have to order from whereever they come from. How long do they take to arrive?
In addition I looked at the questionaire and there are a lot of questions about the actual chemo. So far it looks like TC x 4 for me. I am a bit hesitent to ask the MO for the answers to how long are the drips etc. But I guess I have to. She isn't keen on the idea.
Lmflynn: Did the oiliness of your hair adjust? Right now I cannot go a day without washing and blowdrying. I cannot even style my day old unwashed hair. I will most likely have to wear a scarf when my hair is oily, but at least I will have hair.
To all: Was it difficult to bring coolers and to the dry ice thing? And for those post chemo, how long before you could resume regular washing. The website says only to wash 2 x per week for the first 6-8 weeks after. Anyone with experience post chemo with regular styling and coloring?
Thanks. I wasnt going to look into this, then I started worrying about losing my hair and knowing how fragile it is, then worrying it may not all come back after chemo. I'd rather preserve what I have than worry about my hair never coming back!
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Oh and I forgot to mention, I am already shedding due to stress of this dx. Was not born with a great hair gene thats for sure!
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DebRox,
I have pretty fine hair and I also thought that I couldn't live without regular washing and stylings. If you read back through the posts, you will see that there is a "new normal" you must find. Your hair will not look great, but you will get used to it and you, hopefully, keep your hair. Get your chemo doses and times and then check with Penguin. They will give you a percentage rate of success with which to base your decsisions.
I'm in California, also, if you want to PM me. Julia
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DebRox - I'm in LA and did my chemo at USC/Norris. I was the first person there to use the caps and my onc was supportive. Overall, the nursing staff was very helpful.
Colleen
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This is me 4 1/2 weeks out of final chemo. My hair is feeling somewhat back to normal! Still haven't colored it yet, too chicken.
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One other question.... was it difficult schelping around coolers of dry ice? How many coolers did you need etc? Just trying to plan logistics of this.
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