Cold Caps Users Past and Present, to Save Hair
Comments
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MJpow - Glad you are doing better on Taxol. I saw your pictures. You look great. I love your helpers' t-shirts.
Hopful2 - I wish I had known I didn't need to wash my hair so often. Washing my hair like you did would have been much better for me. I made a mistake, my last chemo was on May 9, the third one will be on May 30 and the last one on June 20. I live in the Central Valley/California. It will be extremely hot very soon. I will have to stay indoors to keep my head cool.
Thank you both for your your kind words
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MJPow-- thanks so much for your reply. It is comforting just to know I am not crazy! I will talk with my doctor about starting the anti-nausea meds well before the capping begins. Others have suggested i let the caps be a degree warmer and that I try foam ear plugs. I will let you know if any of this helps.
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emhaich- yes I do all my nausea meds pre capping some people it doesn't seem to make them sick but I was a mess until they gave me those meds. They knock you out a bit and u sleep but better than being sick hah
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Hopfull--I had thick hair to begin with so I can't imagine how thin yours must be. My ponytail is half the thickness it was plus the underneath bald patches. I saw a couple pics of me from last year and wanted to cry. Even after the 3rd chemo I had a TON more hair. It sucks but it's my new normal and until I see what it used to be like, I forget because I'm too busy trying to make my stringy, dried out, stiff hair to look decent. I have my daughter's 8th grade graduation on the same day! My lashes are almost the length they were. I have a couple original lashes and the rest haven't caught up to them but they are getting there which makes a HUGE difference in how I feel about my looks.
Go Kale--it's amazing to see the progression of hair thinning but you still look great. The one thing I notice with my hair is how see through it is on the back. Like I can see in my shadow spaces between my hair above my shoulders, because it's not as thick. Does that make sense?
MJ--LOVE the T-shirts!!
Fast Girl--I finally colored with Clairol Nutrisse semi permanent last week. but it merely turned my light grays to dark gray. I'll try a deeper color of the same brand in a couple weeks. Still relying on the L'Oreal spray.
Cali--I had TC. Like Hopfull, I washed 2 days prior to infusion then 3 days after. So Monday and Saturday on infusion weeks. I had the worst sheds when you did so hang in there!! I ended up with a half gallon bag of hair in the end but besides some bald spots on the sides underneath the top I kept, it was from all over and only I could tell by the size of my ponytail. Then I washed every 4 days. It's scary but you have SOMETHING. hang in there!
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Hi girls , one question have you try the fake eyelashes ? I am thinking to buy them when i start losing mine. About viviscal when do you start to use it?
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hi vivian, I never wore fake lashes. Mine are starting to grow back. Not enough yet to put mascara. But I've always made sure to wear black liner on my top lid so my eye dies not look so bald. And as far as viviscal I started about 10weeks PFC. I should have started as soon as I was done with chemo but didn't think about buying it. I would definitely wait until your done with chemo.
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Pamela23 - Your statement is encouraging. I hope that, like it happend to you, my big sheds are over. I am SO afraid of washing my hair again, but I must wash it soon. I have dandruff now. I saw your pictures and I can't wait to be in the stage where you are at. Your hair is looking great, as well as your eyebrows and eyelashes.
Does anyone have any suggestion on how to get rid of dandruff without having to wash my hair more than twice per cycle?
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Go Kale-- thanks for sharing your pictures. I didn't take any but your hair looks similar to mine. I'm 8 weeks PFC. I'm starting to see growth on the sides. I wish its wasn't so frizzy, but happy to have hair.
Pamela23--- thanks for sharing your pictures. It's very hopeful and encouraging to see. I saw a picture of myself yesterday and know what you mean about see thru hair on the back. I wish I could add a piece or extensions to it.
MJ--- the t-- shirts are great!!!
Cali58-- I was on TC also, every 3 weeks. I would wash my hair 3 days before chemo, and 3 days after. Then once a week.
I hope everyone has a nice weekend!!
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Cali50--Just remember that if the hair follicle died, the hair will fall out of it anyway. Not washing your hair isn't going to prevent that. It may help delay the inevidible but if it's weak, it'll come out during the day on your clothes or when you run a wide tooth comb through it once a day anyway. You don't want build up either. Once every 4-5 days should be fine. Sounds like you are good at babying it. Those big sheds ARE traumatic but it should;t come out in clumps anymore. You'll still get the few combfuls with each washing but those big sheds are horrendous. You are past the worst!!
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I am on TC (once every three weeks). I just had my first treatment last week. I have curly hair which I usually straighten. I'm trying to embrace the curls but it's a frizzy mess. Washing it only once a week is going to be a big challenge. Where are the pics that people are referring to?
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MJPow, I am on the same regiment as you are, will have my 3rd AC next Wednesday. I washed my hair today and experienced a big shed. When did your shedding start to slow down?
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rdsm- I also have curly hair. I use Shu Uemura oil (you can buy it on Amazon). It helps with dryness, frizz. I like it and it smells very good too.
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Hi HapB and welcome to the cold cap forum. Lots of people use cold caps successfully, with varying levels of hair retention. I had weekly taxol and Herceptin nearly 5 years ago, and lost almost no hair. It looks like you have a small, triple positive tumor, and that often means weekly taxol and herceptin. Check the Rapunzel Project website for lots of good info and a list of facilities that have medical freezers for the caps, or offer one of the "machine" systems
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Do you recommend sleeping in a night cap? Any links or suggestions would be great. I have a satin pillow.
Thanks.
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Radmonkey-- I didn't use a night cap, just a satin pillowcase which I'm still using 4 months PFC.
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ykh- my shedding started about 25 days after first infusion. The big shed for me lasted about 2 weeks and continued but with less amounts till taxol started. I was so worried I would lose all of it but taxol definitely so far after 2 has slowed it. I still get a brush full but way less!! Hang in there
I did have an issue this last infusion as the nurse did not appreciate me called capping I guess. I have always been very specific from the moment I walk in on the schedule of the capping. I do it for them and me.
Fortunately I have had the same nurses for all of my sessions. This was the first new nurse I had had for a while. I told her I needed two hours after infusion which I know is less and penguin recommends but that's what I do. After about an hour and 15 minutes she told me I needed to leave that there were 20 people waiting for my chair . She had been rude the whole time we were there I won't go into detail on everything just very grumpy. As we were leaving there was not a single person in the waiting room and plenty of chairs for me to finish my capping so that I wouldn't have to do it in the car .
I did send an email and got a response that they apologized they wanted to work with called cappers. They said they had 20 people waiting for my chair which is so untrue because it was late in the day and there was not a single person in the waiting room. They promised me I could stay with my original two nurses that I have had since the beginning.
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I'm using a satin pillow case but find it hot. Wondering if a silk pillowcase would be any cooler? Or maybe i need a different pillow instead of the down filled one I have?
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Pamela23 - You are right. I will shed the same regardless of how often I wash my hair. I need to wash it every 5 to 7 days, which still is a lot for me. Before chemo, i washed it every day or every other day. Today is day 13 after second infusion and I have been shedding quite a bit more than I was for the last 10 days. I started with thin hair. Unfortunately, I will not be able to keep as much hair as you did.
Rdsm- A satin pillowcase will keep you warmer than a silk pillowcase. I use a silk pillowcase and a down feather pillow. I have tried pillows with cool gel, but found out that they are warmer than down feathers.
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My hair is getting so thin, that I am already looking at wigs. I will continue using the PCC to save my hair follicles. My scalp will freeze during the last two infusions, as my hair has gotten too thin. Raquel Welch wigs look very natural in pictures. I am planning a visit to Wilshire Wigs once my shedding stops. I miss my long and fuller hair so much, but I need to look forward and accept reality.
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Paraben Free, Sulfate Free shampoo at Target.
I had to buy on line at Amazon when I was in chemo. My penguin cold capper (adviser?) salesperson said you could get paraben free, sulfate free shampoo at Target, but couldn't give me a brand. I was never up for going to Target and looking at tiny labels.
Now that I'm post surgery, I did the Target looking. I found L'Oreal Everpure Shampoo, in different scents that are both paraben free and sulfate free. I haven't used it yet and will report back. But I liked having another place to buy the paraben free/ sulfate free shampoo.
http://www.target.com/p/l-oreal-paris-everpure-sul...
There may be more at Target, but I found this one first. All of the cheap shampoos seemed to have both ingredients, so I started looking at the expensive ones.
Hopes someone finds this useful.
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Is anybody having dandruff issues? I think I have developed a form of that. It's common in my family to have issues but I've always used a dandruff shampoo and never had issues. Now I have red patches all over my scalp, it's itchy and very flaky. I just washed today, last was was Monday, and it's even worse.
I am using Acure shampoo, conditioner and dry shampoo and toppik. Has anybody found a safe shampoo for dandruff or psoriasis that is safe to use when capping?
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mquara, if you buy the acure brand that says clarifying it will dissolve all the dry dandruff on your scalp and clean your scalp better the the other acure shampoo. I don't usually have dandruff but with the less frequent washing I did and found that the clarifying shampoo helped a lot.
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mquara - Plese let me know if you find a good and safe anti-dandruff or psoriasis shampoo we can use. I am having the same problem. I am using Acure shampoo. I also, like you, have darkening of veins. I don't have a port or a picc line, so my veins get darker every time I get an infusion.
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I od t have the clarifying one, I have the orange one? I just bought the clarifying shampoo and conditioner, (love Amazon)hope that helps. Thank you!!
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I use the Acure clarifying shampoo also, and find that it does a good job of cleaning my scalp. (There is some yucky looking stuff that goes down the drain!) I use the Loreal spray to cover my gray as well as Toppik for a thin spot at my crown, and both deposit color on my scalp, even though I try to be very careful with the spray. I dilute the shampoo with water in a squirt bottle, and find it is an easy way to apply the shampoo and make sure I cover the entire scalp. Good luck
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cali58: i'm only on day 7 after 1st infusion. haven't started shedding but can't stand not washing my hair. i also have thin hair and wonder what will happen. do the cold caps still protect your follicles? I had chemo in 1999 and lost all my hair. if they save the follicles, it's probably worth it. It seemed like it took forever for my hair to "sprout" after finishing treatments. good luck and keep me posted on your progress
fastgirl: what is the loreal spray that you use to cover your grays?
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This is the shampoo I was using even before chemo. No parabens, no sulfates, no animal testing, and it's color safe. I bought it at Target. I just started using it in again the past 6 weeks so about 2.5 months PFC. I would suggest it for those of you who are done with chemo. It really leaves your hair strands feeling thicker and holds your style better. I really notice a difference when I use it. Although I still use a clarifying shampoo every few shampoos.
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Home → Day-to-Day Matters → Hair, Skin, and Nails → Cold Caps and Scalp Cooling Systems
rdsm - "Cold caps and scalp cooling systems work by narrowing the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles. With less chemotherapy medicine in the follicles, the hair may be less likely to fall out. The cold also decreases the activity of the hair follicles, which slows down cell division and makes the follicles less affected by the chemotherapy medicine." The problem is that they work for "some" women. I may not be one of them. I washed my hair today and had my third massive shed. I will continue to use cold capsas long as I have some hair. I have heard that hair will grow faster after using cold caps. This is my second time having breast cancer. My first chemotherapy was in 2002/2003. I had 9 cycles of CMF and I did not lose my hair. I was so fortunate then. I hope you are one of the lucky women and are able to keep most of your hair.
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Cali58....I lost the majority of my hair and it was so thin for the last two rounds that WOW...my head was MUCH colder than the first two rounds. Be ready for that...it hurts. The good news is that you will be numb in about 20 minutes and all the discomfort goes away but those first 20 are a doozy!
I am 3.5 weeks PFC and still shedding every day but just a comb full or two. Saw my oncologist last week and he said "see you in two months!" which felt weird. He swears I will have some sprouts and the end of this week and a good "carpet" (as he says) by the time I see him next. I'm doubtful as I see some you had to wait months to see some action (Pamela!)
Radiation is supposed to start this week but there is a glitch with the insurance company so I'm on a temporary hold.
Come on hair...GROW!
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Rdsm--yes, L'Oréal Root Cover touch up spray is very effective to cover gray roots, especially after they get so long. Mine are close to inch and half now, so not practical to use WOW powder for that length
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