Cold Caps Users Past and Present, to Save Hair
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Anyone out there use COLOR WOW on roots?
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great thread thanks. I start abraxane tomorrow at 10 am, weekly 3 weeks on 1 week off. Just got penguin caps, will use dry ice, found it for 80 cents a pound. These things are huge and heavy...just needed some support ... So freeze in home freezer, put on dry ice day of appt, appt is at 10, ice store opens at 7 , hope that is enough time, in future can put appts later in day.
Do I really need mole skin? Does it stick to your head? It looks complicated, hope it is easier than it looks...looks hard to put on while frozen.
Infusion is just 15 minutes so most of it can be done at home.
Got parabin sulfate free shampoo, but what about hair color. Got vegetable dye that last 4 shampoos and you put it on after you wash your hair.
Any advice is appreciated, I feel worried about it.
Thanks Susan
I'm a long term mets survivor (16 years) hoping to eek out a few more years and keep looking and having a 'normal ' life, hugs to you all
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hi Susan, yes use moleskin. You may be extra uncomfortable and get frostbite without it. Put it on before you start, take it off at the end. I had a freezer,but some folks who had to get dry ice had some backup places just in case. I think for morning appts, people would get it night before? They will jump in w advice. Good for you for 16 yrs! Amazing! Good luck tomorrow
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Susan, we bought the dry ice a day ahead of time. It will last several days in the coolers. That may help to make your morning less stressful. I used moleskin on my forehead and pant liners on my ears and chin. The mloleskin has adhesive on the back. Those chin straps are cold, too. I don't think you are suppose to use the vegetable dye until after 3 mos post chemo. I'm not certain about that, though. Good luck! I'm 3 weeks post chemo with most of my hair. It has thinned and is still shedding but it looks normal to everyone else. I can't wait to color those roots. Cindy
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Susan, great if you can do at home, not sure about drive time home? You may need to pull over to put new cap on. Maybe there is a spot where you can cap at med ctr until you really get the hang of it? Not sure what the set up is like there?
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Popping in to say hello to all the capers. I'm 14 mos. PFC and my hair is all one length and long again.
I noticed that in my support group the women who had chemo around the time I did all have short hair. I'm not sure why as what I lost all grew back. I'm guessing they've either chosen to keep it short or are struggling with the awful in between stages of regrowth. In either case it once again reaffirmed that I made a great decision to use the caps. If anyone is interested my before and after photos are on my profile. Hang in there Cappers! It's worth it. 0 -
Thanks , I live 1 mile from from the infusion room and my infusion is 15 minutes ... So I think I can bring 4 then do the rest at home, my husband will drive, but funny to think of driving through town with this thing on.
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is the moleskin just for forehead and chin strap and maybe ears? And did you mean panty liners? Sounds practical. Sounds like a lot, but hopefully not that bad, just need to get through the first day.
I found non peroxide non ammonia natural hair dye at Sally's beauty supply which you put on wet hair , it just lasts a few shampoos but I thought it might be ok.
Thanks for the tip that dry ice will last in coolers. In the future we hope to have late afternoon appointments so my husband won't have to take the whole day off work.
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https://community.breastcancer.org/forum/6/topic/7...
hey Susan, here is a pic of how I cut it for forehead, temples, ears. I never used pantyliners. But I had to cap for up to eight hours
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Well I figure I might as well update everyone..... Unfortunately I am not really a cold capping success story, I have lost all but about 10% of my hair, and most of what i have left has been damaged and broke off, it is really sad, I took what was left of my waist length hair and cut it above my shoulders, Literally i only have like 200 hairs left on my head.... I am having some regrowth from when i had bald spots.. Last week when I put the caps on I got a horrific headache, and made the decision that I was done with cold capping and pulled my cap up and wouldn't let my fiancee put it back on me, Monday I packed them up and shipped them back... I am at peace with my decision to stop cold capping. my hair looks horrific, but I still have like I said 10% of it left, and now look like Linus from the Peanuts gang. To any of you new cold cappers please don't be discouraged by my failure. if you are on AC+T the success of cold caps is not as great as the other regain, it think it is like 50/50 success please keep cold capping. I have no regrets, it gave me time with my hair, and even though I have had no choice but to cut it from my waist to over my shoulders, I am still ahead of the hair growth game. I was recently asked if I would recommend cold capping, I smiled and said yes. Today I did my 8/12 Taxol treatment with no caps, and I will admit it was nice not to stress over the capping , and was wonderful to wash my hair in warmish water.... I will check in with you guys weekly from here on out, to let you know if i end up a cue ball or not.... and again I wish all you prospecive cold cappers and current cold cappers the absolute best of luck....
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Tripper - I am so sorry. I can imagine how frustrating it is to go through all that work and cold and not be successful. I am glad though that you were able to a treatment without caps and save yourself time energy and pain.
I am doing AC-T too so am worried about that 50% success rate as well. Can I ask you a few questions.
1. When did you lose most of your hair?
2. Was your your hair thick or thin to begin with?
3. How many hours did you cold cap after AC and after T?
4. Did you take any supplements?
5. Did you have many SE from the chemo?
Trying to determine if there is any pattern to success with the caps or if it is a crap shoot.
Thanks!
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Has anyone used COLOR WOW????? HELP!!!!
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I have alibeths (using it now) but I'm still way too early in treatment to give you any advice. I seriously couldnt' take the greys anymore so I'm using it. But I'm 8 days out from first chemo.
So I haven't even had a shed yet0 -
KEEP ME POSTED!!!!!!! : )
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Just did a search and I finally found the post! pch said she did color wow during treatment and she was ok...
"I used Color Wow during treatment and it didn't affect shedding at all. It also covers very well and stays in pretty well between shampoos with just some touchup. Good luck!"
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@melb44
1. I had only abou 25% loss at day 21 with shedding, i ended up with a bald spot from my first cold cap due to frostbite... Then from day 21 it was a very steady stream of heavy shedding. When i started taxol i was about 75 % hair loss, and then from there alot of breakage...
2. My hair was very very thick( now u can see my scalp all over lol i look like Linus from peanuts....
3. Because of the thickness of my hair my caps were -33 defrees started 50 minutes before and 41/2 after
4. No supplements until recently
5. On AC I ended up with some heart releated issues, i would feel like a big mac hit me saturday and sunday especially after my darn friday neulasta... My counts hit the crapper and i ended up sick, at which time i ended up staying home for a month till AC was done i am a paramedic i work on an ambulance as well as in the hospital so i took a hiatus... I took round 8 of Taxol yesterday only some very mild neuropathy to my tootsies but it is only when i am on then foe 12 solid... My counts are going up ... And i feel decent on taxol...
The big this i want to stress to you, is that you may be one of the lucky ones who the caps work well on with this regmin... Keep in mind that thinning is expected....
And would i do it over again.... Probably
Good luck!!! Try not to stress over it, keep your hands out of your hair....
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thank you for the picture, this is helping a lot for my first day to know what to do
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Tripper -
Thank you so much for answering all my many questions. My heart goes out to you. It is so much work and cost and time for it not be successful.
I am at Day 24 and have starting shedding much much more in the last few days. However, I don't have any bald spots as of yet. I would guess maybe I have lost about 5% -10% of my hair so far. I have a bunch of hair so I hope enough will stay on my head to make it worth it. Nothing to do but wait I guess and keep my hands out of my hair.
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melb44 - I started 5/7 on TC and just yesterday saw more than usual strands coming out. So nervous for the next few days! My hair was already thin, so I don't have much to lose!
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Good luck Scarlett! CT is supposed to be easier on your hair so you have that going for you. Plus you have to cap a bunch less times. I am very jealous of the CT gals.
I have 4 AC rounds then 12 Taxol rounds. It is going to be a long long summer. 0 -
So I'm scheduled for 4 AC (one every other week) and then 4 Taxol with possibly Carboplatin included (one every other week). Do we think 8 total treatments would be better than the 4 AC and 12 Taxols that most people get? Stronger dosage for me but I'm wondering if the fewer treatments would benefit me. Ugh. I'm getting nervous.
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the shedding really doesn't stop, I just washed my hair and here is just one brush of hair. I been losing 3x times this amount. So upsetting!!
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Thanks MelB44. Of course, I just worry I should have been doing AC+T! It wasn't offered to me, but I'm not sure why. From looking at everyone's profiles, I think it is because I was Grade 2, no nodes, but I have to ask my MO.
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1st capping day not too bad. I feel like perimeter of scalp doesn't feel as chilled , but cap is snug. Any of you have shedding around face? I guess I will do the best I can and see how it goes. Anyone on weekly abraxane? Good luck to everyone with successful treatment and preservation of hair. Hug
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Scarlett, you probably weren't prescribed the stronger regimen because not only did you have no node involvement, you're also ER positive and can use tamoxifen or an aromatase inhibitor after you're done with chemo.
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Birdofparadise, congrats on getting through day 1. Abraxane is the same as taxol (just a different "mixing" ingredient), and a number of us have done weekly taxol with great results. You should do fine!
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Tripper, I'm so glad you checked in. You've been in my thoughts since your last post. I'm so sad to hear about your hair loss. I feel like our ACT journey is just SO long for the capping process. Every week that passes is more and more loss. Ugh. Anyway, I wish you all the best!
NYinshocked, thank you for posting the pic of your hair loss. That amount looks what mine is about daily. It is so discouraging but I guess that's about what is normal for some of us.
Melb, It sounds like you are doing well on the AC so far. Good for you! Keep doing what you're doing. Yes, it will be a long summer but you'll get there. I'm probably down 25% of my hair - maybe a little more- and I'm shedding pretty consistent every day but I only have 5 weeks to go on the Taxol, so I'm hoping I have enough hair to make it to the end. My friends and family say they wouldn't be able to tell about my hair loss if I didn't tell them. Maybe they're being nice? It's just definitely thinner than normal. Luckily, I have no bald spots yet and the shedding has been very even. And like Tripper said, keep your hands out of your hair - great advice!
Steflove, you asked about apple cider vinegar....I mix mine in a spray bottle with water - maybe 1/2 and 1/2- and use it when my scalp feels dry or itchy. I definitely smell like a pickle until I rinse or shampoo. You also mentioned 12 Taxols versus the dose dense version. Personally, from a capping standpoint, if I could've chosen, I think I would have gone the dose dense option in order to have fewer capping sessions. That said, I think 12 Taxols is a lot more tolerable where side effects are concerned for most people. Weekly Taxols, for me, have been a breeze so far. However, they haven't been so kind to my hair.
Warrior woman, nice to hear from you & happy to hear you are doing well! I followed your posts prior to starting my treatment and you were very inspiring. Thank you!
Have a wonderful Memorial Day Weekend ladies!
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what do you all do for eyebrows and eyelashes? Does latisse or lumegen the generic work? If anyone n weekly abraxane able to sa when hair would typically fall out?
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Birdofparadise, I used Lumigan while I was in treatment (dose dense carbo/taxol) and my lashes/brows fell out about the fourth treatment in. If your doc gave you a scrip or if you've ordered it, then save it for when you're done. It won't prevent shedding, but I'm using it now that I'm done and my lashes are coming back in reasonably fast. (They're very light to start, then darken up later. I've only been using it again for a couple of weeks. Will report back.) It's a bummer to lose them, but you're better off waiting till you're finished. It's a lot of money to have to spend twice.
Everyone who's asked about Color Wow: I used it throughout the second half of treatment to no ill effect. Same for Toppik. I got a trim five weeks PFC and my stylist was stunned at how normal my hair looked (while acknowledging that yes, it was thinner but pretty good). Anyway neither product increased shedding that I know of.
Good luck!
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Birdofparadise, I use Latisse and have kept my eyebrows and most of my lashes through AC and 6 Taxols. My eyebrows have thinned considerably and I did lose all bottom eyelashes on one eye about 2 weeks ago but a couple lashes grew in a week later. The rest of my eyelashes are thin and sparse.
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