Cold Caps Users Past and Present, to Save Hair
Comments
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I lost most of my eyebrows after my third chemo and my face looked surprisingly bland, but now, seven weeks PFC they are growing back and it looks as if I have brows again, which is nice. My lashes only itched and thinned a lot, but never entirely fell out. I hear I may lose them and my brows again, and possibly even a third time before my system gets back to normal.
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Leveled, I did not lose any hair during chemo which ended mid -January. So there I am thinking, well of course I have no hair loss as my husband was the best Cold Capper ever!
Then I started shedding, and shedding and shedding for a full five months. It was scarifying.
I always had full coverage -- the ends got thin then thinner then even thinner. I've gone from a three twist around for a pony tail to a five or six twist.
I wore -- and wear -- my hair in a loose pony tail all through chemo as I've never worn my hair down except for the occasional Big Deal Event. That is my one and only break with protocol.
I finally got it cut and colored in July and my stylist confirmed what I thought -- I lost about 30% of my hair, mostly around the edges thn evenly throughout. I had 4 TCH -- not sure how different it would be with six hair wise but everything else wise I was happy to be done.
I'm now on 14 of 18 Herceptin. My hair on my head is growing some. My hair down south came in (booooo!) but the hair on my legs has never really returned. I shaved my legs every single day for years because I can't stand that feeling in the sheets but now I shave them once a week just cuz.
My eyelashes just fell out for the second time (yahoo! ). Eyebrows are present again but seem uncommitted to staying in unison.
The nose hairs lost to Herceptin -- at least that is what I'm told-- apparently actually did something to prevent these huge painful sores in my nose which cause it to drip episodically with no warning whatsoever at the absolute worst possible moments.
Isn't this fun? Now I remember why I signed up for BC -- you just never know what the next day will bring!0 -
Sign up for BC? Where can I cancel!!!???
Me too!
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I highly doubt it will cause any major issue. I think about how hot my head gets from hot flashes and realize, the water would have to be darn hot to equate to that, LOL. So I decided a few weeks ago to wash with lukewarm water while in the shower. I have not seen a change in my shedding (almost 3 months post, still shedding). Prior to this, I was using cool water and washing my hair at the sink. No way was I going to stand in cool water. I hate being cold! Amazing I made it through the caps, LOL!
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I'm not sure just how warm you went, but I always used luke warm water for my hair washes. My instruction booklet said to use "water no hotter than body temperature". I think you will be fine.
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Theladygray,
Thanks for your input. Glad to know I am not alone. It's almost 16 weeks and still shedding. I hope the end is near. I do think this week I see some new growth but disappointed to still have the shedding. It's getting harder and harder to conceal. I wear my hair up in a clip and I am so tired of it. I hope the end of this is near.
My hair has returned in all other places two fold....go figure....I have to pluck my chin hairs daily. As for my legs....well let's just say I have more than the five o clock shadow, I have to shave every day if not twice....if only my head was the same.
Lisa0 -
soltantio, I occasionally got warm water on my hair, and I was fine. I think that we all tend to overworry about this stuff when in treatment. The fact that you're using the caps during chemo means that you will keep your hair in some form. It will not be exactly the same as before treatment for awhile, but it will get back there...and much more quickly than if you'd lost it all!
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I talked to a young girl today in her 20s about to start chemo (for the second time). She cannot afford Penguin Cold Caps but does not want to lose her hair again!
I don't know anything about AdvanceCaps or ElastoGel. Do they work if you follow Penguin protocol? PCCs were extraordinarily successful for me. But if she just can't afford them, should I recommend one of the others? I don't want her to waste money on something cheaper that doesn't work. She is having 6 treatments of Taxotere. Thanks!0 -
howard, I will PM you.
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I am using the Elasto Gel. So far, they have worked pretty well. I received my third of four taxotere/cytoxan treatments last week and still have hair. It has thinned a lot - probably lost about 25% - but I don't have to wear a wig. I don't think anyone who doesn't know that I am in treatment would even notice. If she uses the EG's, she should follow PCC protocol. Most of my hair loss occurred after the first treatment, and I think I didn't have the caps cold enough that first time. Also, very important - wear each cap for only 15-20 minutes at a time and re-freeze. They warm up quickly once you put them on. I purchased four caps for my two hour treatment, plus I wear them 1/2 hour before and three hours after. It am making due with four, but I probably should have gotten 5 caps to ensure that each was chilled more as I rotate them.
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So,
I just heard that American Idol singer Kellie Pickler shaved her head in honor of her friend that is going to start chemo this week. This just makes me sad. I do not know what her friend's treatment plan is but I wonder if they even heard about Cold Caps?
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Anyone go on vacation PFC? We will be going to FL at 8 weeks. I am afraid to get any sun on my head or get too warm.
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Ang, Bet they didn't.
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That's what bothers me so much about it.
A famous person could bring so much attention to the Cold Caps instead of bringing attention to shaving their head.
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Somebody should tweet her about that. Maybe there's time for her friend to save her hair, even if the idol singer shaved her's.
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Nope, too late. I just googled it and there was a picture of both of them with no hair. I agree, such a shame that the attention could have gone to get the word out that you don't have to lose your hair.
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Reneerodin: I finished chemo the first week of May in 2011 and we took a vacation the 2nd week of August that summer. I was fine. Hair was still shedding but not more than it did before vacation. I spent a week in the sun. I tried to avoid getting my hair wet in the pool or at the beach. I wore it loosely clipped back or in a ponytail.
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ditto mdg. I went to the Bahams about 5-6 weeks after I finished chemo and was fine. I wore a loose hat in bright sun and always a loose ponytail- they recommend no salt or chlorinine in the hair for awhile so I just did not go under and I rinsed everyday. Shedding was still pretty heavy but no worse. You can do it!!! Enjoy yourself fully- dont worry about your hair, it will still be there when you get home! : )
On another note, I am getting my first post-chemo haircut today & I cant wait! I am now about 8-9 weeks post chemo, shedding seems to be slowing, and Im nervous but Im going for it! Of course, I'll wash it & comb it out, and leave w/o blow drying or styling, but fun nonetheless!!
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ccb2 Thank you for the advise!! Did you ever feel like the ponytail was pulling or sore? I can't seem to wear my hair up with bobbie pins without it feeling sore. I had AC/T chemo so that might be the difference. Today is 7 weeks post final Taxol.
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reneerodin, Sorry about the ponytail- I really did not have that issue much. Can you just push it under a baseball cap with the ponytail out- no bobbies, no holders? That might help. I know sometimes the use of hats can be "controversial" w/the caps but it was my best solution during the vacation & as a bonus, kept the hot sun off my vulnerable face! It worked for me but may not work for others. And BTW...CONGRATS on finishing AC/T! I had that the first time and it was ROUGH for me! This time I had cytoxan and taxotere and it was better in comparison.
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Did you use the PCC's with AC? This is also my second time around with BC. I didn't do Chemo with the first tumor.
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No, I did not use the PCCs the first time & had lumpectomy, chemo (AC/T) and radiation. totally bald! This time, I had a bilateral mastectomy & chemo (cytoxan and taxotere) WITH the PCCs and voila! Hair!! : )
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Congrats!!
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Thanks, my sistas!! : )
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I'm still shedding but I have noticed that a lot of hairs that fall out lately are not full length. They seem to have broken off part way. Looking closely at the ones on my head some of the dark roots/new growth which is almost an inch and a half long appears to have a knob where it attaches to the older blond part of the hair shaft. Some just have the knob and the rest is gone. I am guessing, broken off. I wonder what that represents and what happened. Maybe it is the result of my having lightened my hair six days before starting chemo - I know, I know, I shouldn't have. It was dumb of me.
I also have half an inch of fine hair growing where I had been bald in my two frostbite spots, along with longer, dark rooted coarser hair. I don't know what I will end up with and I am watching with interest. It's nice to no longer have small shiny bald spots to comb over. Now I have small dark spots to blend in with the blonde.
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That's interesting Hortense - I too, have noticed that I was losing shorter hairs. My pre-chemo hair is lighter than the chemo hair, but not enough where I can see this "knob" you are talking about. Interesting!!!
My shedding is slowing down, I think. Or it could be that I got frustrated with dirty hair (I get a flat spot at my crown after sleeping and you can see my scalp - this is the thinnest area of my hair - always has been an issue, even before chemo). So, I went to washing every other day...so less hair with only two days of not washing, ya know? However added together it may still be the same rate of loss. Either way, it is not too much at this point, and I'm feeling more and more confident about my hair! So confident in fact that I am using little velcro rollers in my hair to give it some much needed "lift" (I blow dry them with the dryer on the lowest heat setting possible). I feel like my hair now looks like it did prechemo when styled - I'm SO happy!!!!
I'd like to share my cold cap photo album - you can see the length of my hair has grown throughout chemo. I am thrilled with my results!
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Hortense and dancetrance,
I am 17 weeks pfc and the shedding is slowing. I to have had a lot of breakage, many short hairs fall out all over. I have no bald spots but am very thin around the crown as well.
I had my hair colored with henna at 12 weeks the color didn't take to well but helped. Henna is also very drying since its all natural.
I took a big chance last week and had my hair colored again with no ammonia, no ppd's and a very light amount of peroxide. It also had coconut oil in it. I must say ever since then the shedding has slowed and the condition has improved dramatically.
The color also took great and I had a lot of the dead stuff cut out, my hair feels lighter but much healthier.
I am and have been for the last week been washing and conditioning with Moroccan oil. It has made a big improvement. I switched to washing every other day as I spoke to a tricolologist who said the worst thing for your hair follicles is dirty greasy hair, it clogs the pores. I don't know by doing this if I am shedding any less but I feel a hell of a lot better.
It's amazing how much better we feel when our hair is done........go figure.
Dance your hair albumn is great no one would ever know. Hortense same with you from what I can see.
Leveled0 -
Leveled, that's very interesting what your tricologist said. I found that by day 3 my scalp was still getting a bit sore. Washing it every other day = no scalp soreness. I suspect maybe after reading your post that my follicles were getting clogged. It just feels and looks so much better washing every other day.
A friend gave me that moroccan oil - have been afraid to try it - but may now after hearing your experience. Thanks!!! glad to hear your shedding is slowing.
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Dancetrance,
The morracan oil shampoo and conditioner have no sulfates or parabens in them. It just makes my hair a little silkier.
I also have been trying to wash and massage my scalp more, and diluting the shampoo less. Still only condition the ends......or what's left of them.
Idk wish I had more answers myself, what works for one doesn't always work for others. You have to be your own best advocate.0 -
I use a moroccan oil shampoo, conditioner, deep conditioner and styling products. All are paraben and sulfate free. My hair is the healthiest it has been in years. I also color my hair myself with Naturtint. My hair still looks super healthy. Before BC it was dry, breaking and thinning. I think the regular hair color products really damaged it. My hair feels so silky, not try, smooth and healthy! I use the Organix brand products - you can get them at most stores like Walmart, CVS, etc....
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