Penguin cold caps
I've decided to go through chemo (12 weeks taxol/carbo) and will be trying the cold caps to prevent hair loss.
Have any sisters used the caps? any success? How did you manage your hair through the process?
thanks
Comments
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Hi Malaika,
I am sorry we have to meet this way, but glad you found us!
I have not heard of cold caps---I tell the ladies--I learn a lot on this thread. So if you will, tell me what these are--Thanks.
I guess I just "rolled with the ball", after the 2nd treatment(adramycin/cytoxan) my hair was coming out--I should have got a wig early on, however I know I was in denial, so I finally got a wig before all my hair was gone and this way the "shop" could match my hair and color and the lady was great!! Some people do not loose all of their hair, I did. When I started Taxol, by the end of those last weeks, my hair was beginning to grow back in, that was the end of the month of June,
by Sept. I took off the wig and sported a very short cut--I have a round head and wore it well.
Good luck to you in your choices, and I hope some of the other ladies can give you info on this--I want to know too.
Take Care.
Linda C.
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Hello Malaika,
My onc said they don't work but, I have read somewhere on one of these threads that they weren't good to use because the chemo would not reach the area of the cold cap. For that reason I avoided it. I'm not happy to have a centimeter of hair right now but, it will grow back in time. That's what I keep reminding myself anyway.
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hi nasharayne,
I have seen some case studies where they do work, and the pros seem to outweigh the cons so I'm going for it. If it doesn't work, I'll live with that, but I can't see me not even trying.
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Hi Malaika,
Thanks for the website---I went in and read about the caps--I think that is interesting---I am wondering like a lot of other things, for some folks it will work and others not. I say , Go for it!!
Thanks for sharing, and best of luck.
Linda C
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Basically that is true. For some people it works, and others it doesn't. They report an 88% success rate though, and I like the odds.
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I hope it works for you. Please come back and share your results.
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1. Well...i can say that at the outset, I am dissapointed in the fact that there don't seem to be any black people either using the caps or unavailable to speak to me about them.
2. They are fairly costly...about 30 a cap and I'll need 14. this is a per month charge. and there is a 300.00 deposit plus shipping costs.
3. I have my first tx on the 11th. I'll keep this thread updated as I go along.
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Update 1
Have had two chemo treatments so far. I have asked around on the board and not gotten many responses about when I should expect to lose hair on my regimen (Taxol weekly/Carboplatin every three weeks with the taxol and Herceptin weekly)
The way I figure it, I have had two treatments that were exactly one week apart. So far I haven't lost any hair, but am reserving judgement/excitement until next week which will mark 2 weeks from the start of treatment and I've had 3 of them...in case the medication levels mean anything.
I wear my hair naturally and it is quite thick...so I worry about whether my scalp is being cold sufficiently.
I put it in braids on one side the second time to see whether it would be better (like as if I were getting a weave sewn in...) and felt that that side of my head actually felt colder than the other.
Again ....so far I have lost absolutely no hair. not on the edges, and not on the nape where a lot of ppl say they lose hair.
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Hi Malaika:
Please keep posting your results. I'm going to MD Anderson tomorrow and I'm going to ask if I can wear these. My tests are still coming back but I am HER2 positive with two tumors (1 is 9 cm!!) in my left breast. I am hormone receptor negative so my 1st onc. told me I would get TCH every three week for 6 cycles. I think that will change now that I'm switching to MDA. I'm anxious to hear how it works for you. Good luck!!
Carol
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Hi all....
okay it is the day before I begin my third tx. I am losing my pubes!!!!! I tugged on a little portion of my head hair and it is still attached tightly. I'll post again on Saturday or sunday if something dramatic happens with my head hair..
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Malaika,
Thanks for the update. I didn't get your cocktail so, I can't tell you when the hair should fall out but, I really hope this works for you.
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Malika,
Thanks for sharing---this is so interesting!!
Keep posting!!
Linda C.
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Okay...so it is sunday. Day 15 after first treatment. So far I've had three treatments of taxol..one including carboplatin and no hair loss. I am still reserving judgement (thats the scientist in me) until later on. Why? well, so woman somewhere said that Frank (the caps inventor) told her that if she hadn't lost hair after 21 days she wouldn't. I'm still 7 days shy of that 21 days. I am assuming that he is basing his statment on something factual and am trusting that to be the truth for now.
Some hair did come out in the comb yesterday, but it didn't seem like an overnormal amount to me. Moreover, it didn't have follicles attached. I think I broke it off in the velcro attached to the caps and when i took my braids out, it came off. Still..it really wasn't that much at all. I lose far more than that when I comb my hair roughly on any given day. So. I'm still hopeful. I'll give another update in about a week. after the next treatment or if something dramatically devastating happens
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Malaika:
I'll pulling for you. I went to MDA last week and my onc said I could wear them if I wanted to but that they didn't work. I asked him how he knew and he said because the chemo you are getting will make you lose your hair. I've done a lot of research (as much as I could on the web) and I'm going to give it a try as well. Mine treatment will still be TCH. I still have a lot of scans and things before I start chemo. I hope you are getting through this without many side effects. Good luck.
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Day 22
Setbacks and success
Setback: So on the first day of treatment I got the pccs too cold. They froze to the point of burning my scalp in the front/top of my head. It was obvious that they were too cold on that day, and the burning became evident in the days thereafter. It was quite sore, and a scab formed. It eventually peeled and dandruff formed daily in the spot. I didn't say anything about it because it didn;t seem to affect my hair.
Well on the thursday before my 4th treatment, I noticed that long strands of hair were coming out of my head. I checked for follicles, and they were obviously attached to the strands. I wondered if I was getting the shedding other women talk about on the pcc threads elsewhere. Then, I checked that spot that had burned and noticed that it was devoid of hair. The entire area that had been burned was bald. Looking closely, I noticed light stubble in the area. So some of it broke off and some of it came out in that area. It is a small spot, and easy to cover because I haven't lost any hair anywhere else. My hair is fairly long and quite thick. And the hair next to the bald spot looked as wavy and shiny and thick as ever. So I chalk this up to overzealousness at the outset.
I caution all you ladies who decide to try this process...if you feel that you're burning your scalp (I had a perm phase in jr high school...it feels just like a perm application thats gone on too long) Be more mindful of getting the caps warmer before continuing. This is a problem I think because the caps get colder in the top generally and its easy to be impatient waiting for the things to warm up a bit.
Now the success:
As I mentioned before, my hair on thursday was every bit as thick and long as it was when i started the pcc treatment. I've heard women say that they lost their hair a month out in one night after their third or fourth treatment on the regimen that I'm on.
This hasn't happened to me. I'm 22 days out from the 1st treatment...I have not thinned at all. I guess my new goalpost will be on day 30. I'll let you know if things change for me. For now, I have to say that these caps work, and I find that they were worth the cost even though I don't think that I really needed more than 5 caps at a time. I keep reusing the same few caps and haven't had any problems getting them cooled down appropriately. I can say that they are worth it now because I found myself unexpectedly horrified when I lost that bit of hair in the top. Its a small area, and covers, but moving my hair away from it and looking at the white patch of scalp moved me in ways I can't describe here. I knew then that I wouldn't take the loss of my entire head of hair very well.
I'm also a bit concerned now that I might have a delayed loss of hair....I'm very much looking forward to ending this regime.
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Malika,
This is just amazing to hear!!! The trauma of when your hair is coming out, and then gone is too real, and just to think there is something out there that could help this. This is exciting!! Thanks for sharing.
May you have the best of luck with the remaining processes.
Linda C
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Linda,
I understand that now. We understand our hair and its importance to our culture and connectedness to one another. I mean Chris Rock just made a movie about it.
The question was looming in my mind before chemo:How long will "it will grow back" really take. Especially since I'd been growing my hair out for years to reach a good length.
I would like for others not to have to go through chemo induced alopecia if it can be avoided.
If anyone has any questions about how to do this and want to pm me. feel free. I'll respond. I want you to know that I'm not employed by the pcc company. I'm a grad student that wanted to get through this without if affecting my standing/perception in school...I didn't want people asking me questions or staring at me ...or treating me with kid gloves. I hate fake shit. but deep down, I think keeping my hair was just as important to me. I do love it. Messy and standing all over my head, I love it. Good luck guys and I'll update again later.
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Week 6 or 7..I've lost count...
I still have my hair. I have lost strands, but I have noticed that they aren't any longer than 8 inches or so...shorter than my hair length. I attribute it to loss from breakage (I have to be very careful with my hair in the moisturizing department and since I haven't been washing it at all and not moistening it regularly, it is breaking off). I notice that the amount that I have lost is far less actually than what I would lose combing and brushing my hair before chemo. So I am kind of blaise about it really. I would say that I'm not losing hair. The bald spot from over cooling is still there and glowing. And after losing that hair there, I know what losing hair really is. I'm not losing any anywhere else.
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Malika,
Just WOW!!! After hair loss two times already behind chemo, this is "Amazing".
Keep us posted!!
Linda C.
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malika,
i am planning to use these caps..a woman in my area has used them and is going to walk me through the process. are you happy with results so far? did you cut your hair shorter before you started? if i met you would i even know youre undergoing treatment? thank you so much...arbella
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hi arbella
1. yes
2. no
3 nope
Good luck...its a breeze
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thanks again malaika...pls keep us posted! all the best, arbella
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Dear Malaika,
Thanks for sharing the info about cold caps. I have never heard of them either and have found the whole process you have shared to be interesting and encouraging.
For me, the chemo I had to use (Andriamycin-this was the source of my hair loss! cytoxan & taxol), took my hair out in less than two cycles.
Stay strong!
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Amazing - there is nothing more shocking than losing hair. Just a miracle in my book!
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10 weeks completed, 2 weeks left, and i still have my hair.
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Malaika,
AMAZING!!!
Linda C.
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that is such great news..i met with someone friday who is going to help me with the whole process. did you lose your brows and lashes malaika?
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@ arbella- they are both thinning. A few people say that theirs didn't drop til it was all over. I wouldn't be surprised as they have never been this thin. But I don't mind saying that they will grow back!
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someone just told me they used a product called latisse...available from a dermatologist....on brows and lashes...grew back in days! fyi...arbella
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