Cold Caps Users Past and Present, to Save Hair
Comments
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Pigtails around the house are a good idea, but I'm afraid I'd look silly with them at work. :-)
What about wearing hair up in a clip? Anyone know whether the clip pulls too much? Straight, fine, flat, dirty hair with dark roots is not my best look. (smile)0 -
Hi Howard - have you tried dry shampoo? It gave my stringy hair a bit of a boost. Also, I think you just finished your first treatment. CONGRATULATIONS!!!!!!!! I think you are 1/4 done. In time your hair will adjust..the greasy feeling goes away after a few weeks.
Another idea - wrap the piggies into Princess Leia buns. Start a new trend at work! You could even bring a light sabre and show how you are kicking BC's buttocks!
Annie
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anniemomofthree - no they did not send me the eye brow bands. I did not know they existed until after I got the caps and already started treatment. I am done after this coming Fridays chemo. I keep the hair I lose in separate baggies for each treatment. Allows me to compare and helps keep it in perspective. As my oncologist says chemo is no cake walk. For me, having hair is a real boost.
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Nancy, was the reduced fee after 3 months told to ypu up front? We heard nothing about this. Seems like the pricing is all over the place now. Maybe it's the competition.
Annie, about the shedding in the back - are you using Penguins or elastos? I made velcro elactic straps for the elastos to pull them tighter to the head.
Sashette, eye brow bands ? Which company has these? No one said anything to me about these.
Anyone on elastos - did you use the wet method? I am unsure because it is used with Dignicaps that are at +5C or +41F - big difference btwn that and PCC or elastos at -30C.
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Sashette - Congrats on being done on Friday. That is great news! I found out about the eyebrow strips a few days before I started. I have six in the freezer where I go. I have not kept the hairs in a bag. I have a lot of hair to begin with prior to chemo. I have had a lot of hair fall out. My DH told me point blank, this will put you over the edge if you see that big bag filling up...think he was right!
Motherofpatient - I am using the Penguin Cold Caps. I am 5'10' and have a large head. We knew this going in. So we have been taking the eyebrow and putting it on the nape of the neck. However, we started doing this on round #2, so my hair fell out after round #1. Not a big deal - only I notice. The psychological challenge is that there was A LOT of hair that came out daily from that area. I have not tried the wet method, I am not familiar at all. More info???
Re the payment, we all have different numbers of caps, different lengths of time that we are using them, different locations all over the world, different methods for cooling which may impact the caps longterm durability. I would not expect us all to have the same prices. The other thing is that we have a new technology that had received a lot of attention in the US, with that comes logistic issues. Frank/Carl and team are doing their best to accommodate us all and I am SO very grateful.
Love to you all the penguinistas....I am back in tomorrow for TCH #3...I will be halfway done on this journey!
Annie
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Howard....I have been using a large tooth clip since the start of chemo and have had no issues at all..Just put it in the middle of the head and not at the top,o therwise the hair can pull down, you will feel it right away if it is too high up. I was really happy I could use this clip again, my hair is very curly and I can give it a styled look with this clip. I also have used cool water, not cold, and it did not have an effect on how much hair I lose at each weekly shower. Hope this helps
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Howard: You might want to try a loose headband--I got a couple packs with different colors and have worn them throughout. They cover up some of the grey roots, neaten up the hair and make the hair on the sides look fuller. Lots of people say they are "cute".
All: I'm 2 months past final chemo and I'm going to get my hair colored w/ Loving Care (peroxide free) tomorrow. Can't wait! Shedding has pretty much stopped, altho I still get a few hairs if I flat iron it gently. Like others, I lost a lot around ears and nape of neck because of big head and thick hair. New hair is about an inch long in most places. Not very useful yet, but nice to see! I also have a couple clip on extensions for the sides for when I want to look a little better. I wouldn't use these until the shedding slows tho. Good luck everyone!
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Lucky60 - thank you so much for chiming in! I went back and read your posts and it sounds like you and I have the same hair/head issues. It was great to read and see how far you have come. Congrats!!!! It is really stressful to see all that hair each and every day...I keep doing the math about how much I will ahve in the end and it is worrisome. Though NO ONE else notices. Really. I look healthy and full of hair to the normal observer!
Thanks and good luck with the loving care...let us know how it goes!
Annie
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The pricing does seem to be all over the place. I paid about $530 a month plus credit card fees over the 5 months I had the caps.
I'm also wondering why Frank isn't keeping track of all of the successes. Doesn't he need to document success in order to help with FDA approval? I talked with my Onc about this, (who is now a believer and discussing me with other oncs) and he said, why does he need FDA approval if people are buying them and he's making money? Gave me something to think about. If that's the case, I'm sad. I want every woman who goes through chemo to know the caps exist. They won't know if doctors don't believe and unfortunately, they only believe successful trials and or FDA approval.
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Her2intn and Lucky60 and Anniemomofthree: thanks for the hair tips. Glad to hear a clip to put my hair up is an option. I'm on day 10. Is it day 17 or 18 when hair typically falls out without PCC? Oh I'll be glad when that time passes and I know these will work for me!
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Annie: Hang in there--I had actual bald spots underneath and if I made it, so can you! I also was calculating the rate of loss and wondering if I'd have anything left--but I do! Noticeably thinner, but it still covers. My hair was REALLY thick, though. I found some of my old school photos when we were cleaning out my Mom's house and oh my gosh--my hair didn't even fit in the frame sometimes! It will be interesting to see what it's like when it all grows back. Anyway, I'll report back on how the coloring goes. The Color Mark touch up only goes so far...
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I can relate to the big hair...it is thick and straight, but back in the 80s I had some pretty stylin' perms that made my hair enormous! Those were the days...lots of mousse, hair blowing and curling irons. I thought it was so awesome!
The Color Mark is so nice...except when it is all over the scalp and appears to be a yellowish...oh well, I try to think of it as the "new me."
I definitely noticed, on days 16-18 a tingling that I think is the follicles. I had an acute awareness of my hair roots. It was kind of strange. I had noticed it on round #1 and thought maybe it was psychological. Then on round #2 I had the same sensation. On round #1, these were the first shed days for me. On round #2, I shed about the same each and every day.Best of luck everyone...we have one foot of snow, so far!!!!Annier0 -
Hi folks,
Here is the cost of the caps from the PCC page. One of the biggest variables will be the exchange rate via your credit card at the time you are charged. It's not insignificant.
• There is a fixed monthly rental charge for a set of Penguin Cold Caps of £328 (approximately $500 depending on the exchange rate) regardless of how many Caps are required.
• A one off deposit of £400 (approximately $600) is required which is refunded when the caps are returned to us in good condition.
• Payment for the caps is made by credit card for which there is a 2.0% surcharge. We DO accept American Express.
Please note: All costs will be charged in Pounds Sterling
For further details please see the Cap Availability>Patient page.0 -
Michcon: One of the key purposes of the FDA trials is that the results can be measured and quantified in a study. Not that our results don't matter, but for research purposes, anecdotal responses are not the same. My husband took such detailed notes in a log, his info would have been fabulous in a study. I completed caps about the time the UCSF clinical trial began; in fact my neighbor, who I coached, was in the study and I was not. We both had the same positive results in terms of hair and in terms of negligible SEs. But her info will be the one captured in the study.
Howard: the TC hairloss is anywhere between days 14-21, usually. Frank Fronda always says if you make it to day 21 with hair, PCCs are working for you. Anecdotally, from coaching fellow PCC'ers, I'd say that's exactly the right window. Once your shedding begins, you'll find your body hair begins to disappear or stop regrowing. Your head hair may begin shedding at about this time, and you might find it's a pretty regular cycle with each treatment.
Just hang in there, and keep steadfast to the hair protocol on the non-treatment days! It makes a difference.
Susan
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Hi Everyone,
Yes, the pricing on the Penquin caps seems to be all over the place. It varies every month because the exchange rate for pounds to dollars fluctuates. I was told from the start that after 3 months the price would go down significantly, and when the woman in the office sent me a statement, it said the price would go down to 50 pounds sterling after the 3rd month(plus 2% for their credit card fee, plus my credit card's 3% fee).
Well, I had my 3rd chemo on Fri. and washed my hair on Sunday. I had much more shedding this time, but I did use foam rubber rollers to try to style hair a little and I gently used a styling brush, probably shouldn't have--won't do it again. I too have felt like my roots were hurting or pulling. Maybe it's real, maybe it's imagined. Anyway, no one notices any lost hair and really it is very insignificant. Haven't lost any other body hair yet, when does that happen?
I wanted to get back to an earlier idea---the Penquin Charm. I think I have found one, I will contact them and see what I can do about getting them.
Keep Positive!
Nancy
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Is there any way to help prevent shedding at the sides of your head over ears and in the back? Did everyone lose some hair here? Just curious...
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To prevent shedding on the sides and back try making the elastic band around the Penguin cap even tighter. Also, use a satin pillow case or wear a satin night cap. Everyone loses the most hair on the sides and back, so you are not alone.
Keep Positiv... You might want to wait a bit longer after treatments to wash you hair. I know it looks awful after plastering it down with Cold Caps, but if you can just give it a little lift instead of a wash, that might help.
I always had that weird scalp feeling before my hair started shedding. It felt like I had had it in a ponytail and let it loose, but milder. Then the shedding started. I'm one of the ones that lost a lot of hair, but still did not need to wear a wig. A lot of us have much thinner hair- but it is hair and it's all ours. Think positive and remember you would be bald by now.
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Hi Maria, Julia and all the other fabulous penguinistas. I am so bad at calling out everyone individually, please know that I love each and every post here on this discussion board!!!
Maria - if you think you have a larger head. Try an eyebrow band at the nape of your neck. I do that now (rounds 2 and 3 - today!). Also, like Julia said, use the bands - we use four on my head to maximize the contact. Watch your freezer temps - mine did bounce around from -34 to -28, again. I can not remember if you are doing dry ice. Sorry. But, DO NOT put the warmed caps back with the cold caps, this surely take the cap temps down.
Like Julia said - you will shed - I am/did as well. But, no one notices. If fact, I have only told close friends about the substantial loss at the nape and around ears. I figure that this is a private issue....kind of like not showing my brand new BMX scars and the new breasts to everyone, such as my PS, my husband, oh yeah and about 6 nurses, and my oncologist....wow the list is getting long!
I really do not think I will ever show them to others. So, long story short, it may be better kept private. A good girl friend, a nurse, came up to me and saw my blond hair on my black coat and said "so, your hair is falling out" at that moment I decided not to talk in depth and just said, "yes, a little here and there..."I am off to take a hot bath - I am still so cold from being under the caps from 9:30-4:30. We are so lucky to have this technology available to us!!!
XOXO
Annie
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I'm not sure if Frank is still providing eyebrow bands along with the caps, but I used them to prevent some of the shedding/thinning at the nape. I made the decision to try to save that area because I thought that having more hair at the base would provide more fullness than the hair above my ears. So basically I put the caps and velcro straps on and then I put the eyebrow bands over the base for added protection. Not sure if it made a difference but I kept most of my hair at the nape.
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Bride - did it work for you? I thought that they heated up too much, too fast. But, oh well! I think I got the idea FROM YOU by reading the other posts. Thanks...although I think it was too late, AFTER round #1. But, I could get a jump start on growth back there...it is all good! Thanks for posting...did you get married (based on your name?).
BIG RECOMMENDATION TO NEW PENGUINISTAS ....read the older posts, takes while but it is so worth it to get little tips and tricks!
Still feeling good, one day out from TCH #3!!!
Love to all the sister penguinistas!
Annie
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HI to ALL
I finished my Taxotere, Carboplatin last week. 6 cycles later hair still there thinner but there.
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It is so nice to hear all of the encouragement and suggestions ladies. I know once I get started I will just go with it....for now it's a week away and I am still anxious. Oh well......in a week I will have one chemo session down and be moving forward. I don't think I have a large head so hopefully all will be OK. We shall see. I went searching for shampoo today....so far having a hard time finding the Regis shampoos....what other things have you used? I do have Giovanni hair products (sulfate and paraben free) and Organix (also sulphate and paraben free) but none of these were recommended. I know for sure I will nees some type of conditioner - one you can leave in would work.
Zlota - CONGRATS!!!! That's great that you are done!!!
Anniemomof3: I did not think about not putting the caps back in the cooler....I will write that down. I am using a cooler - no dry ice so that will make a difference. I am going to buy my own thermometer just in case....this way I will know for sure things work well.
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Maria - I had a list of about 20 things to remember just for cold caps. You will have a list for your meds to keep track of as well, such as putting emla on your port (if you have one). Don't forget the icing of nails and toes....so much to remember! I would put lists together in your dedicated "chemo" bag. I use a large LL Bean bag that holds my electric blanket, a plastic baggie of stuff like my thermometer, mole skin for head, pantiliners for ears, scissors to cut them, pens to trace the mole skin, etc. The LL Bean bag simply goes back in the laundry basement so I do not have to look at it for three weeks in between. About two days before I pull it out and update lists.
What is your actual start date? I will send you prayers and positive wishes!!!!! You will do GREAT!
Annie
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ZLOTA - CONGRATULATIONS ON FINISHING!!! I am so excited for you...stay in touch with us all. Our collective journeys are inspiring...
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Zlota.... Congratulations. How wonderful to be finished and with hair!
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Yippee!! Zlota!! Congrats on finishing! So happy for you.
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zlota: Congratulations! Time to take the Penguin graduation march. You did it!!!!
xo
Susan
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Well, the PA's and nurses are finally starting to notice that my daughter still has a good head of hair after two chemos with a 3rd next Monday. Elasto gels and PCC really do work.
The nurse at the breast surgeon's office actually wrote down the information so she could investigate further. That's progress.
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mdg - I wouldn't worry about the shampoo/conditioner. If you read the really old posts you'll see that "baby shampoo" was what was initially recommended. Now, most woman know baby shampoo is very drying and hard on our hair. And baby shampoo is no longer recommended (Frank has a hair specialist now to consult with on these matters).
A mild shampoo that is diluted should be just fine. Keep conditioner only on the very ends, not on the scalp (and I don't remember why, just that is what I did during treatments).
Colleen
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Another tip - wash and condition your hair with your head back so that your hair falls straight and is ready to comb when you get out of the shower. I started out washing (in the beginning) in the same "circular" fashion and noticed that I had more tangling. Duh! I guess it is hard to teach an old dog new tricks since it took me about 5 washings to realize this!!!
Sisters - I hope you all have a great day.
Annie
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