Cold Caps Users Past and Present, to Save Hair
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I am guessing the trial places cc users at different temps. to determine what the optimum temperature is but 37 f is oddly warm. At that rate I could go outside and stick my head in the snow. What a cost saver that would be.
While PCC recommends 6 months PFC before cutting and coloring, does one month post final shedding sound about right to everyone? Is it fair to assume that the 6 months is to be on the safe side as some people shed longer than others?
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I stopped shedding around 3 months PFC and used Nice and Easy like I always have at around 4 months and had no problems at all. I am now a little over 6 months and need to do it again!! Hair is growing like crazy! I used the Elastogels like you did Marley!
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diem - there was someone who posted on this board a few months ago who was in the Dignicap trial. I can't remember her screen name, but maybe she'll pop in here. I seem to recall that the trial's measurements showed that she'd lost about 30% of her hair at that particular point, but I don't recall whether she posted after completing chemo. In any event, if the Dignicaps work at such a (relatively) high temperature, so much the better! All of us who froze our heads at -34 degrees are jealous!
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LisaM - congrats on your success! I had almost no shedding during or after chemo; because of that I felt I could color earlier than suggested. At about 7 weeks I used a no-peroxide, no ammonia color (Clairol Beautiful Collection), and I used it again about 5 weeks later. For my next color about 5 weeks after that (so at about 17 weeks PFC) I went back to my usual salon color product, with no ill effects.
I never did use cold water on my hair - it was lukewarm. My understanding was that we could use water that was no warmer than our body temperature, so I did. I went back to normal washing procedure at about the 12 week PFC mark.
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Oh noooo!!! I'm only 11 days after first chemo and yesterday 3 lashes fell inside my eye. Today was hair wash day and combed before shower, was happy to see only 24 hairs falling. But after hair was washed, I combed and counted 189 hairs. Is this the beginning of shedding? Has anyone started shedding so early? I feel nervous to see that much hair down. I had saved a bag of hair from two weeks before chemo. I did a pre chemo test, were I didn't wash my hair for 4 days and when hair wash day came I kept the hair that fell during showering. Comparing the two of them, today is almost close to the test amount. My scalp do hurts a little. Will keep you all updated.
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dance trance & warrior woman--bummer that I can't just crank the temperature down with that dignicap! I'll ask the trial coordinator about the selected temp and get back to you guys.
patinMN--thanks for the tip! I'll try and search through the message boards
At least the 30% seems in line with what the trial coordinator told me (well, 33-50% haha).0 -
Diem - Ask the trial coordinator if you're part of the control group. I hope not. I hope they have good reason to expect favorable results for you. That would be a shame but they do need the control group. I imagine you signed all sorts of consents.
The photos you are about to see are for the benefit of all the women following behind me who are moving into the freak out stage where the hair counting and baggie labeling begins. I have been out and about the last few days an nobody knows I'm getting chemo. Yesterday at Look Good Feel Better I managed the onslaught of questions about why I still have hair and no one could tell I've lost any. One woman who hasn't started chemo yet had less hair than I have. Today is day 49 and I have every reason to think I'll get through this.
So...sit back and enjoy the show!
This is what came out on one of the worst days of my life - Day 24 (and days 18 - 30 were no picnic either!)
Try counting all those hairs! And here is what it looks like stuffed into the baggie preserved for years to come.
See that! Completely stuffed. You cannot fit one more hair in there. And BTW, this doesn't include all the hair that fell out during the day and night. This is washing only.
This is what came out yesterday when I washed and combed my hair a couple times and what I collected throughout the day.
And here it is all spread out if you want to count them.
And here is the total hair lost for all of days 45, 46 & 47.
Okay. Not a clear photo but you get the idea. 3 days of shedding and it is about the same amount as I would have normally lost but the only difference is the manner in which it comes out. Bottom line - I shed a lot. I wonder if I hold the record? Is there a prize? But I still have hair and nobody knows.
And so the question is, what will I do with all this saved hair? I like the idea of giving it to the birds for nesting,
Artsmart - What art project will you make with your hair? I need ideas. I'm thinking a voodoo doll. I'll hang it in my office to frighten my students. That should put an end to the pesky talking while I'm talking habit that they have.
Have a great day with many carefree moments, Ladies!
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Diem, the dignicaps are maintained at a constant temperature because they have circulating gel. Of course they are warmer than the gel caps you constantly have to exchange with a colder one. The penguin caps are not a constant temperature--you put one on that is very cold and it quickly warms up so that in 20 to 30 minutes you have to put on another. If you stuck a cap on that was maintained at -30 F (which is very very cold) you'd freeze your scalp and loose not only your hair but your skin as well. You don't want frost bite on your head! Caps for most?/many? people don't completely stop hair loss but still you get to keep most of your hair. A temperature close to freezing maintained for a long period of time will keep blood flow away from your scalp.
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has anyone used a hair rinse sooner than 3 months post chemo? I would love to color my gray hair!
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Warrior Woman - thank you so much for sharing those photos!! It was sooooooo reassuring - and yes, I am totally in that freakout moment-checking the mirror constantly to make sure it's still all there. I have been closely following your progress as I am only a few days behind. But so far so good! And I'm not sure what I'm going to do with all that hair yet - I have an artist friend who is currently embroidering with hair (http://www.flickr.com/photos/katekretz/3009365248/in/set-72157608720690681)- I don't have the patience to do anything like that - but I may create a sculpture (my husband is also an artist - glassblower) and have been thinking of preserving them in small hand blown bottles or ampules - a voodoo doll sounds awesome - though I don't think it would scare my students - they've come to expect that kind of thing from me! Here's to another day with hair! Hugs to all.
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artsmart - Oh, that embroidery is freaky. She's very talented but I'm not sure what I think of it. There is something very creepy about it. Don't tell her I said that. Since I don't embroider or blow glass I am going with the voodoo doll!
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I won't tell her. But I agree - creepy - but that's part of its' appeal to me. Kinda like a voodoo doll. Plus sewing with hair is just plain amazing. Been thinking about that voodoo doll. I am really liking the idea - the more I think of it - I may have to make one too!0
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Maybe we should start a voodoo doll contest on here!
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Miche, and other Dignicap user's and representatives-It is fact that the Penguin cap is colder when placed on the head than it is when removed after 1/2 an hour. But, even after the 30 minutes have passed and the cap is removed, it is still much colder than the constant temperature of the Dignicap. Most of the temperatures I've recorded fall in the range between -17.0°C to -12.0°C. This is much lower than the Dignicaps.
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Loving the VooDoo Doll Idea!!! I should have saved my shedding. But are you not supposed to use the hair of the victim you want to VooDoo to make the doll??? LOL
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the VooDoo doll idea is pretty great... Haha
Just got a haircut! First one in over 4 months. My hair looks so much healthier!
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4sewwhat - We'll have to be really nice to those voodoo dolls!
Daye - Keep us posted. I cannot wait to catch up with you.
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Yeah for the haircut Daye! I colored again today and going for another cut tomorrow. New growth is crazy out of control! I call it my troll hair!
Yes WW we shall get the VooDoo dolls massages and sit them by a pool or in a relaxing tub, take them dancing, etc.....
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Here is my hair post haircut. Friday will be 6 weeks since my last chemo. Now all I need is highlights!
4sew- I'm sure you will feel great after a cut and color!!
WW- you will be done soon too! I hope everything is going well.
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Daye you look AWESOME!
I haven't been on here in a while, but wanted to chime in on the questions about when people started coloring and cutting again. My dark brown hair showed my grays so badly I was desperate to cover them, and ColorMark only helped so much toward the end. Here is my timing:
I did my first cut about 2 weeks after chemo ended. I only let them do cold water (no shampoo) and it felt wonderful to cut off all the dead ends. This is probably earlier than recommended but I saw no ill effects
I did my first color about 4 weeks after chemo ended. I used Clairol Beautiful (ammonia free,peroxide free) It washes out after 8-10 washes. It can be found online or atplaces like Sally Beauty Supply http://www.clairolpro.com/collections/beautiful-collection-product I also started standing under a shower again around this time.
I switched to Naturtint hair color when shedding fully stopped, around 8 weeks after final treatment for me. I still use Naturtint today, 8 months PFC, even though I know my hair can handle the chemical stuff. I don't really see a reason yet to return to the harsh stuff.
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Daye, you look beautiful! So wonderful to see your happy smiling face on the other side of chemo. Huge congrats!
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Daye! So pretty! And so glad you are on the done side of chemo!
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WW- Thank you, thank you, thank you! You don't know how much relief it gave me to see your pictures. I was starting to stress out, but now I feel better. You look great now, even after all that hair loss. I went to the my Dr. yesterday and he said that I have beautiful hair and he didn't see any different. I was like I haven't reached day 21 yet. ha ha. He showed so much interest on the cold caps (he remembered I was using them). He asked lots of questions and I mentioned about the freezer and he was like: Let's go for it. I want to wait at least until I'm done with my third chemo. I have faith on the cold caps working, but I want to be living proof at my center that they do work. I like the idea of the voodoo doll. I would probably make a display doll and have someone make a little wig with the hair for the doll. I have a curio cabinets with dolls from the countries I've been, that's were mine would go. I'm afraid with a voodoo doll that my kids would grab it and pull the hair off, nooo not again!
Artsmart- I love your friends art. I've always like things that are different, not the ordinary stuff. Art that gives something to talk about. I make piñatas, but I don't think I can use my hair for that. Congratulate your friend, she does great artwork. Some of my piñatas -
http://www.flickr.com/photos/craftyworld
Daye- You look so beautiful, your hair looks beautiful too. Enjoy your cruise, just take care of the sun, take lots of pictures and forget about the rest. You deserve that vacation!
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It's funny! As am sitting here writing my post and my 3yr old is sitting next to me, he lifts his hand and says: Here mommy, a hair!
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Daye...I knew we were around the same time. You look awesome. Were you nervous getting your hair cut? I am so afraid of anyone touching my hair. Have the best time on your cruise!
My friend flat ironed my hair for my daughters bat mitzvah a couple of weeks ago but that is all I have done. I will have to post a picture.
Sweet mom...I can understand your anxiety. How great that you are the 1st person at your facility. I had my treatment at Memorial. It is such a great facility in an unfortunate situation. I have actually spoken to a few people about using the caps.
WW...I love reading about your journey. Your attitude is awesome!
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Daye, your hair looks beautiful!! I love seeing everyone's photos. They provide much needed inspiration that all this capping is worth it! I noticed some cradle cap happening last week (#7 of 12) and tried the ACV rinse. Thanks for the tip, atlbc & m1970- it worked like a charm. Headed out the door for #8- wishing all of you a peaceful, low shed day
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warrior woman--my study coordinator said that if i do the consent then i'm automatically in the treatment group. although i was looking through the paperwork and it says that i will be wearing the cap 90-120 minutes afterwards…I wonder how they will determine that. and thank you so much for sharing those photos! i think when the time comes i should get some plastic baggies ready as well to document the shedding.
miche--hopefully keeping it constant at that temperature is enough!
makingway--yeah I'm a little concerned about the warmer temp but i guess there's nothing much i can do at this point. i was scouring the threads the other day and noticed that in 2011 or so there was a dignicap trial going on and the constant temp then was 5C or so and they wore it for an additional 90 minutes past--for my trial it's going to be 3C for 90-120 minutes past. it probably didn't do too well in 2011 so they're tweaking the parameters a bit. there might be a few more rounds of tweaks until they get more conclusive data about what works the best--guess i'll just contribute to the science!
daye--omg you look so great! love the hair!!
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My theory on how long the cold caps have to be worn post chemo is it probably has something to do with the half-life of whatever drugs you are being infused with - which I think is how long the drug tends to stay in the body after chemo before it is all washed out by the kidneys. Just my theory!
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Diem - I am scheduled next Tuesday to start the DigniCap trial at UCLA. I was told that women are losing between 20-30% of their hair. I am hopeful for the 20%. I am supposed to be modeling the DigniCap that day too as the press is going to be there! What press, I don't know. So exciting to get the word out to others! They are supposed to take photos and ask me questions. Good luck to you! When do you start?
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how do u keep from getting frostbite when using the caps. I got a little frostbite the first time. My second tx is tomorrow. My scalp peeled a little but the hair is still there. Thank goodness. Thanks for the help.
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