Cold Caps Users Past and Present, to Save Hair
Comments
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snoopy
maybe a light leave in conditioner? some people have had good luck with various organic spray on leave in conditioners.
I am now scared of oil because I think it made my hair fall out, but of course not sure... I put in on my scalp and all my hair because of dryness and tangles. .... I'd say don't put the oil on your scalp just to be safe.
I agree, it is scary to see your hair change so much, be brittle, tangled and shed! hang in there. maybe don't comb it. consider even leaving some of the tangles as is.
brca1babe
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I got the morocan oil conditioner and put it on my hair, dont know doesnt look like its helping to detangle; I am so scared and i cant stop crying. The back of my hair is so tangled into 2 big balls like. I dont know what to do. I put on the morrocan oil conditioner and left it on, my girlfriend is coming to help detangle my hair. At this point, i really feel i could just chop off the 2 tangled parts, its just so scary and i am so emotional at the moment. I had planned to spend the day outside with my kids and now i am sitting here cant stop crying and i feel bad for them..they were all dressed up ready to go out. I hate BS!!!
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snoopy ... hang in there!! Let your girlfriend work on the knots. keep pressure on the roots so that you're not tugging. Just go slowly and it'll come out. You can't control what falls out. I've been on a 2 week wash rotation because i find it so depressing. We all understand. Did you wash standing up? or did you tip your head over the tub. I was getting more knots when i tipped my head into the tub. Much better when i switched to washing in the shower, keeping my head out of the direct stream of water, and using pitchers of cold water to wash and rinse. You'll do better next wash. it'll soon be over. Get a bandana and go the do-rag route like me. i posted a photo a few days ago of someone with a scarf on like me. Only i have to clip up the bottom because i ALWAYS have shedding. BS bites it, no doubt.
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Snoopy: how it is going?
I noticed you purchased morrocan oil conditioner. Did you purchase that or the morrocan oil hydrating cream that is a leave in conditioner. It is in a pump bottle. I use it after I wash my hair to help detangle and I'm always prone to tangles.
Please don't stress, your friend will work out the tangles, do a LivCar suggested, with pressure on the roots.
I just washed my hair this morning, ugh what a mess. More hair dropping. I was so desperate I had my hb examine my scalp to look for new growth. Good thing is he noticed new growth at the part and back of my scalp where it is looking rather bald without comb overs. My temples are very thin as well.
To top it off, I dropped some conditioner on the floor, and when i was getting out of the shower, I fell. Fortunately I did not hit my head, my ankle, back and elbow took the brunt of the fall.
Hang in ther girls!0 -
Thank u for the words of encouragement. I got the moroccan argan oil conditioner, my hb also got the j&j detangler spray, I dont know I sobbed so much I have a headache now. My girlfriend is on her way, I will let u know the outcome. I have 2 ball lile tangle at the back, I dont know what I did wrong. I washd under the shower cool water low pressure, I diluted the shampoo in a cup amd only used once, then I put conditioner. I feel so down n sad, we had planned on a family outing and my kids were all dressed n ready now we cant go n I feel bad for them. Thank u ladies for listening n for the tips.
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snoopy- you and I can cry together. I just had my wash as well. I knew it was going to be bad but the knots just made it worse. I swear I had dreads in 5 days time. I now have a full lucnh size baggie of hair, and when I say full I mean it. I have a few areas where I lost more than others and I think it was just due to have tangles. i have a leave in conditioner but it didn't help. I still have hair but ti feels thin. Still crying. So i don't know if it makes you feel any better but I am right there with you. Sending big hugs.
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My friend is here trying to detangle my hair but so far no luck. The hair is tangled so much in a ball, its like having a thread tangled together in a ball. I dont know what to do, I think if it doesnt detangle I will just have to cut off the tangled back part. I am so scared cant stop crying. I yhink the shampoo reacted to my permed hair.
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snoopy so sorry, I'm here for you. most likely your tangle was like mine, hair that had already fell out and it made 1 big tangle around the good hair. it took me an hour to get it all combed out, try to be patient it will come out and so will hair but you'll still have hair. remember all the other women who started with us are bald now. can you take a lorazapham? somethign to calm your nerves? a shot of tequila? haha or 6? just kidding we have to laugh to stop from crying
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Dexxy, thanx, so far nothing is working, I am afraid I wil just have to cut off the tangled hair n leave the front part which was not tangled. I know we are not supposed to cut when using the caps but I feelike I dont have any option at the moment.
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Snoopy- I wish I knew what to say, I unfortunately am new to all of this shedding as well. but i do know the pulling is worse so if you think cutting is your only option i'd go for it. I wish i had done it instead of pulling out half my head!
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I am using the cold caps - am about to have my third round of TC (of 4) and while my hair has thinned out, no one can tell. I am washing every 7 days with Honeysuckle Rose shampoo by Aubrey and conditioning with Moroccan OIl moisture repair conditioner. I don;t comb my hair during the week, have curly hair and just fluff it a bit and leave it be. Day 19 after 1st chemo I started shedding allot! If i touched my hair, 5 or 6 strands would come out each time, if not more. That continued for about 6 or 7 days. I was terrified to wash and when I did, so much hair came out, I really was worried. I would lift my hand out of the sink with tons of hair. I did keep in mind that normally we all lose hair at each wash and without washing for a week, that much more hair will come out. That's helped me somewhat emotionally. But I was worried, When I gently combed through, after the wash and conditioning, it looks horribly thin and I could see my scalp, but after using a cold dryer to fluff, and letting it dry the rest naturally, it miraculously filled out, no scalp showed and still looks pretty darn good. No one can tell it is so much thinner. I am waiting to see if I have a second round of shedding but so far none.
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Snoopy...I am so sorry about the tangles. My hair did not tangle at all so I don't even know what to suggest. I hope you had some luck getting it out.
I finally washed...I waited 10 days because I am fed up with the shedding. As usual - more shedding all day because I washed. I air dry and barely comb through it with a wide tooth comb. All day long hair was hanging down and I could feel it on my arms. I am just so ready for the shedding to be over but it never ends. I am 10 weeks PFC and still shedding a ton. I have a lot of hair growing in though....lots of hair 2 inches and shorter.
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So I finally had to chop off my hair at the back, I had no choice, after trying everything -moroccan conditioner, detangler, olive oil- I was left with no other option than to cut off my hair at the back. The hair had tangled so much so tight i was feeling the strain, spoke to the local pcc rep n told her what happened. So now my hair at the front is long thinned and the back is completely short, I will continue using the caps, hoping they will still work. I have a headache feeling so drained. Hoping tomorrow is a better day.
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snoopy73 - what a night for you! Maybe the shorter hair will turn out to be a good thing. It may end up looking thicker back there. Mine is so thin, with the part showing and my greys exposed. terrible. Keep us posted, i'll be you'll feel better in a few days.
Maria - i've been washing every 2 weeks. Washes are too traumatic. i washed last night and lost sooo much. My last chemo is in 10 days. If i continue with PFC shedding i'll be sunk.
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I was thinking about this... for those of us that have a lot of loss and thinning, I think it is still worth while to keep up with the caps because you may get new growth faster if the chemo is still limited from hitting your scalp.
as mdg wrote, you might get a lot of new growth - 2 inches is a lot! if you read the thread "hair hair hair" and see the pictures, post chemo hair is often weird, wispy, gray and takes 3 months to reach an inch or so in most people. so maybe the caps help with the quality of the new growth.
I am trying to look at it that way. Even if I have more loss now that I had hoped, maybe the areas with loss will grow back quicker and healthier post chemo because they still didn't have the full damaging exposure to chemo due to the caps.
thoughts?
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Good morning ladies Snoopy i hope you were able to get some sleep. I tossed and turned every time I moved I felt like more hair was falling out. after my hair dried, I had 2 more tangles. i think what is happening is that when the hair falls out it stays attached to other hairs because mine is to my waist and is curly. So when I washed it was as if all the "shed" matted. I still have hair but my scalp hurts and and I can feel how thin it is when I touch my head. I'm wearing a cold cap right now hoping to take away some of the pain, plus hoping to stimulate mew growth. Or how about just stop the shedding for a couple hours!
trying to still stay positive0 -
Hi All:
I am so sorry some of you are having such problems with tangles and heavy shedding. I think it is because your hair is very long and when you wash it is heavy and pulls on the roots a lot, which are barely hanging on as it is. I think everyone should get a hair cut a few weeks or a month or more before starting cold caps, because there is less stress on your roots with shorter hair. We are trying to save ourselves from being bald, but that doesn't mean we have to save all our long hair. Hair grows, and after chemo is over we can concentrate on growing back long hair. I also think diff chemo protocols have very diff. effects on the hair as well.
I would call Frank or his agents, if there are any in your area, and ask what to do for the tangles. The oil doesn't seem to be the answer, because a few women here have tried it and said it made bald spots. I don't think you should use any products other than what Frank says to use. Also only wash 1X a week. Those who stray from the protocol seem to have more problems. Stick to Frank's protocol and routine.
I only had a few tangles and they all occured when my hair grew during chemo and got almost to my shoulders and tangled and came out in tangled clumps. I use a spray on leave-in conditioner by Alterna, called Hemp Organics spray leave in conditioner. It seems to work, but then I have cut my hair very short. My shedding hasn't stopped completely, but it has slowed down alot. I am 3 mos PFC.
A problem I am experiencing now is the sore scaly spots on the scalp, ugh! I just found a second one yesterday after I washed my hair and was combing it out. The last 2 washes I even scrubbed my scalp a little, very gently, because it has been 7 months since I started Chemo in Jan. and I think that is why the scalp is getting scaly.
Truly, I think we are blessed because of the caps, not only because it has or is saving our hair, but because all the anxiety is transferred to worrying about saving our hair and the care of it and we are not obcessing about the disease we are fighting, and therefore I think the drugs and treatments are probably working better for us.
Keep Positive!!
Nancy
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nancy-I wanted to cut my hair but I only had a week before starting treatment and everyone said don't! so I didn't. I'm now thinking I should, what's worse the weight on the roots or the stress.help ladies let me know what you think, I'll cut it right now!
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Has anyone used silica compound to help regrow hair after chemotherapy? I purchased some Biosil, which is a form of silica, at a vitamin store at the recommendation of the store clerk, but am trying to research it before giving it a try.
Does it just make your hair grow back in thicker, or does it actually speed up the actual growth of the hair? Also, should I also take biotin supplements with the Biosil?
The clerk said taking the Biosil would be adequate, and that biotin was not necessary. I'm also hoping that there are no side effects. It's rather pricey, so that's a big consideration, as well.
I would love to hear from anyone who has tried this, and whether it actually works, or is a waste of money. Thanks in advance!
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Happy Sunday all:
So sorry to hear about your tangle problems Snoopy.
I sure wish I'd cut my hair short before the caps (used the ElastoGels) as the longer hair makes it worse in my opinion and I think it ends out looking scragglier too. The more I read here, I'm glad now that I went with the EG's as it seems mine worked as well as the PCC's and much less money. I was really regretting not using the PCC's but it seems that the two aren't that different as long as you stick to the regimen. Who really knows though.
Tomorrow I'm officially two months PFC (I kept thinking I'd already passed the 2 month mark but tomorrow is it) and I'm still shedding. Nothing major but definitely shedding but now it seems that I have a non-shedding day here and there. I'm sure hoping it slows down and stops soon. I also need a GOOD shampooing as I also have that yuck on the scalp, no sores though just that white yucky coating. I'm still afraid to wash thoroughly and rub the scalp yet. I've also noticed that my hot head is now gone. Nails still peeling though but growing like crazy.
Radiation is going well and no major issues but I've only had 9 TX's thus far and have all the way to 33 to go.
Good luck girls and stick with the caps as they do work.
Arlene
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Sashette, thanks you! It' s been 4 wk after treatment and I hope the sheddind will end in the next 2 months. I have notice that my hair in nape area is growing and I have like an inch of root in my head.
Livcar, the secret is to tight the cap as much as you can. But I think you already finish, right?
For dry skin I am using carrot oil, I am an esthetician and that one of the products I used for dry skin. I used to have oily skin, but in 2008 I had Herceptin treatment for 1 yr. and dryed my skin. And now I'm back to herceptin again. I notice carrot oil is great for this condition.
I got the idea from another lady to keep the shed hair in a plastic bag, it' s seem a lot, but I am surprise how much hair I still have that no one can notice, specially since I had thin hair. PCC caps works really good on thin hair since the cold can go through better.
Now I' m trying to loose water, I develop edema on 3 and 4 treatment wich is one of the side effects of Taxotere. I gained 12 pounds and it' s been really unconfortable.
Love,
Tiki0 -
My hair is long and I did not get tangled at all.....maybe it's just the texture of some people's hair? Mine was a medium thickness before chemo and was down to the bra-line in the middle of my back when I started. I wash it bent over the tub with a hand held sprayer with cold water. I never lather enough to pile hair on head...I just let it hang down and I wash it in sections. I always make sure to comb any tangles out before I wash it too just in case. I do use conditioner and rinse it out too. I then put it up in a large t-shirt (it's more light weight than a towel...works great) and let it sit in the t-shirt for 15 min or so. Then I gently start combing from the bottom and work my way up. Once it's combed I use Aveda Be Curly gel on it and just scrunch a bit and let it air dry. I get no tangles this way. My hair is wavy naturally but not curly. I guess the tangles are just from the thickness and texture differences in people's hair???? I feel so bad for you Snoopy. I can tell you my hair continued to grow a TON during chemo. I have already cut 3 inches off the bottom to neaten it up. My roots where the color did not cover must be almost 4 inches long in some areas. The last time I had my hair colored before chemo was the last week of February so all of that has grown since then. I did use temporary color a few weeks ago and my sister said I had tons of hair that was short - about 2 inches long she noticed when she was doing my color....so the hair will continue to grow. I have a lot that is short - about 1 inch at my part line right now. Lots of hair at least 2 inches long all over......even if you have to cut shorter to even things out, it will still be hair. I am so sorry you had to cut so much off though...hugs! I was thinking about you all last night....
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Snoopy73. I used Kenra-lightweight leave-in conditioner. Only at the ends, don't apply to the scalp. Whatever you use ladys do not apply nothing to the scalp.
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There's so much insanity with all of this that you need to do what you can to keep sane. My hair sheds constantly. So much so, that i can never wear it down. I'd be covered in hair. So here's what i do ... i comb at night only. That way, I sleep-off the hearbreak! in the morning, i roll it up in a clip. The hair at the top of the clip covers my thin spot at the top of my head. Then ... i don't think about it again until night time. Because it's clipped, I don't have as many loose hairs lying around. Although ... my bangs have started to drop so that's becoming a problem. The point is - do everything you can to minimize your heartache. We have so little control over what the chemo will do to our hair. We're doing our best, and that's all that matters. Count every day with hair, as a day of victory. Don't look in the mirror. Don't touch your head. Keep busy, busy, busy. If you don't, the hair loss and the damn steroids will take over. We're doing the right thing, and we'll all be ahead of the game soon enough. Hang in there gals. When my daughter naps i'm going to see if i can glue gun a hair extension to a hair band ... that'd cover my thin patch! BUSY BUSY ...
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thanks ladies-t too like snoopy had a lot of loss, i probably should have cut out the tangles. now my scalp hurts and if I even think about it more falls out. I know you all have been there, so I'm not going to whine. I need to hide my baggie full of hair as everytime I see it i cry. has anyone used DEVACURL? its all natural and it has essential oils like lavender which is calming. Most leave in conditioners require your hair wet and I'm not doing that for awhile so looking for spray on, something make it soft. I'm going to try the deva and see.
Livcar-I've been braiding mine at night and keeping up as well during the day so I don't have to think about it. except now it hurts to do that so I'm giving it a break.
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ok ... so call me crazy, but i just cracked out the glue gun and made myself a hairband extension. I"m not crafty, so this thing could fall apart! i cut out the clips and just glued it to the inside of a hairband. It gives me an extra layer of hair up top - which is what i need. Unfortunately, i can't wear it down because it sheds too much! i may try it with a loose clip at the bottom. Maybe i'll look like i'm trying to beat the heat. I feel better thinking about solutions than the hair at the bottom of swifter!! xo ladies
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Hi ladies, Happy Sunday!! Hope your day is going well. Yday was TOUGH!! I dont think I cried soo much ever since i was diagnosed with BC like yday, i had tons of emotion running all over the place!! Thank God my girlfriend was here, dont know what i would have done without her (she's my BF since kindergarten:-) After trying absolutely everything, i finally lifted my hands up and told her to chop off the back hair, so now am getting used to my new "hairdo" short at the back and long at the front, thank God the from is long enough to cover the back and it kinda looks like a style, i put a headband and then tuck the long front hair in the headband at the back so they cover the short hair. I think what happened to me is what few ladies have mentioned here, I initially had long thick hair up to the middle of my back (bra strap) the end were permed and colored and the roots were new growth natural texture & color. Last time i permed & colored my hair was in march 2011, so the new growth is big and thick. So what already my hair was shedding because of chemo & because i did not do a touch up i.e. the dead hair was coming out. What happened yday was i combed my hair before wash, there was alot of shedding, so didnt comb much (i wish i could ahve combed and pulled the hanging hair) so some hair was still hanging there i.e. shed hair, so when i washed my hair the shed hair got tangled with the other hair and thats wneh the MESS was produced!! Another thing is, i also think the burts bee shampoo did not agree with my hair (i read reviews and not all hair type go with it). I stood up at the shower with cool water in very low pressure, wet my head then put the smapoo in a cup add water then put it on my head, i did not rub it or anything, i quickly rinsed and put conditioner then rinsed, after that i dabbed a towel and wrapped a sarong like material loosely at the back.
All in all, i am planning to continue using the caps, as you ladies say i dont want the chemo to damage my hair, then after chemo, planning to cut off the top long hair and get a short natural look:-) my hair naturally grows very fast so i am not worried, but just trying to get used to this new look.
Thank you all for your thoughts and advise and encouragement. Much appreciated. Now I am going to take my kids to a bday party at the park:-)
Big hugs to you.
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Snoopy73 - thanks for the detail. THere's a lot to be learned there. I always regretted combing out my loose hairs, now i know that's probably best. All of our comments help new women coming on board. Your attitude is great. You'll be fine. Glad to see your post about Burts Bees. I switched to that brand a few weeks ago ... i wonder if that's why i'm shedding so much more???
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Hey Girls: I hope all our shedding calms down soon. The current chemo girls seem to be on treatments close to each other, so we are experiencing our big sheds at the same time. Hang in there. I know it is hard, I washed my hair yesterday, along with tears. Tomorrow I am back on the steroids in prep for my last TC and last round of caps. Soon I will be joining the ranks of PFC Girl.
I have a question for a past Cold Cap users. I noticed my my hair, of course not scalp, but leg and pub hair is growing between cycles of TC. By Day 18 or 19 I have stubble, but when I tug on it, it falls out as though nothing is holding it in. So does this mean that after my last chemo this will happen again and I have to wait until approx 6 weeks PFC for hair to grow that will stay. I guess I am just anxious to have my hair grow and stay put! I don't even care where, I just want it to grow again!
LivCar: I love your idea, I have some hair extensions around somewhere that I can glue to a head band.
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Deb - i found a few companies that sell the hairband extensions ... Jessica Simpson has a cute one. I just can't get them here in Canada. I just tried my little home made craft and it works!! i wish i could wear my hair down - it would be perfect. Just too much shedding.
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