Cold Caps Users Past and Present, to Save Hair
Comments
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yes you had me thinking you were nearly bald! You have about as much hair now as I do. You are far from being bald. Now relax and try not to stress about your hair. If cold capping wasn't working you would be bald by now
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Hi everyone! I received my cold caps today and am working on the capping protocol this weekend to try to get it somewhat streamlined before Tuesday.
Quick question: For really long and heavy hair, do you think it would be best to cut to just below shoulder length to take off some weight and pulling on the roots?
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Viktoryak - I have short hair, and I've been using scarves, headbands, and now that it's nice out...maybe hats? Due to the styling restrictions (and that I wash my hair once a week) you gotta get creative. I don't have any grays, so I can't help you out there but there are products available. There is a dry shampoo "root touch up" by AG out there that could maybe mask the gray. There's a blonde, light brunette, brunette options. However, It is a dry shampoo so it will wash out when you shampoo. Just an idea. Maybe someone else has other recommendations.
Good luck!!!
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EstelaLorca, Thank you for reply. So it is ok to use scarves...Good news. Did capping work for you well? DId you feel you needed to purchase a wig as well? I was thinking to do it just in case i need to go to some special occasions (i hope i still have some strengths and desire) once in a while to wear it.
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viktoryak, no one has told me otherwise but I am very careful when I use them (scarves and headbands). Capping, I'd say, was a success. I had an appointment today with a Naturopath and she couldn't believe I still had all my hair. I did have a lot of shedding, and there are places that are thin (and it's thinner all over) but no one can tell, except of course my DH. I also use these keratin hair fibres that fills in the baldish areas and it creates fullness.
I do have a back up wig but haven't had to use it.
I have one more round to go, it's next week, and at least I feel I have a head start on getting my hair back.
Oh and I highly recommend getting a silk pillowcase, it's easier on your hair!
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What are those keratin hair fibers? can you recommend any? Also what shampoo and natural hair color can i use. I appreciate your reply. I am very worried about how will the chemo go. If there any other symptoms besides hair loss? My dr. says i will not have any just numbness of fingers. Hard to believe. But he is prescribing 12 rounds once a week taxol plus herceptin for a year and read it is easier then other drags. Also i read weekly taxol for 12 weeks easier for a body then once every 2 weeks for 6 weeks.
I appreciate any support and recommendations from the group.
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starting to get that prickly tingly feeling on my scalp. I remember it gets g a little worse and sore in the next few days.
Please don't shed!!
Please don't shed!!
Please don't shed!!!
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Day 16 post 1st Taxotere cold capping... No significant shed (Any day? Any hour?) but I will celebrate either way how this goes as I have had hair almost a week longer than last time I was thru this crap thanks to cold capping and the courage to not shave it off yet. Just had nice dinner out with hubby. And if nothing else I am significantly closing the gap from loosing hair to getting it back. Screw you breast cancer. I can take the medicine that disintegrates you and minimize my side effects and impact you have on my life. My bar was low, just cold cap to ensure I don't get permanent hair loss... But having hair a week longer than last time and odds are I'll get at least this weekend or more out of this mop...!!!!
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Looking good, 7of9!!!
Victoryak, the cold caps site has a big long list of instructions - shampoo with no sulphates, paragons, alcohol etc. I used Burt's Bees, seemed ok. Health food store brands seem to be the way to go. The fibres I have used are Toppik, bought it on amazon. You shake it on your head and it sticks to the skin and to the other hairs and for me, makes my prominent crown ( which I usually artfully blow-dry over) not so prominent!
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Looking for advice or shared experience... I have been cold capping since Feb 9th with Penguin Cold Caps. I started on four rounds of AC and currently completed my 3rd of 12 weekly rounds of Taxol. I have followed all directions to the letter and my question is specifically about the shedding. I shed NOT STOP. I know the capping has been effective as I have no bald spots and my chemo nurses tell me I would have been bald back in Feb if not for the capping. I just didn't expect so much shedding on a daily basis. I only wash my hair on Fridays and that is an emotional/traumatic experience due to the amount of hair I lose each time. I'm guessing I've lost about 50% so far. My question is this...I still have 9 rounds of Taxol left. Is it even worth the cost of capping at $630 month if I am shedding at this rate? I fear I will continue to pay all that money and come out bald in the end anyway. Please advise. Thanks
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if you stop you WILL GO BALD. From my understanding you will continue sheddin. But it should taper off. Be lost like 60% or more of my hair and still have 2 treatments. Supposedly your hair is growing even though you can't see it happening and it comes back much faster with cold caps. If you stop now you will lose all progress you have made:(
I freak out every day because of all this crap shedding! But I'm not bald and no one knows I'm in treatment unless I tell them. Did you apply for insurance help or for funding help? I heard insurance pays 300 a month towards it and if your insurance doesn't cover it there are places that help you pay:)
Good luck!!
Vick
And I stopped worrying about all that washing stuff. Personally I think that kind of crap. If your scared to wash just lie in the tub and let your hair float around. It feels great on your scalp and loosens your hair up too. I know I've got serious cradle cap and because I can't stop picking at it more hair has come out. Soaking in the tub is helping the crusting and itching
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Trixie,
Washing your hair doesn't cause more to fall out. It looks like more because you're washing only once a week. The hair you see in your brush on wash day is actually an accumulation of a week's worth of loose hair that just fell out and get trapped in the rest of your hair. Washing just removed those loose trapped hairs. It doesn't make more fall out. That advice came straight from my dermatologist.
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I'm curious to hear about your experience. I have the same treatment regimen, but will start 4 weeks after surgery. I had embraced shaving my head, so the thought of cold capping hadn't crossed my mind. I'd love to follow you through your process. It seems like a ton of work and time, but my hair is gorgeous and the one thing I get complimented on. So many decision we have to make. I'm glad we have each other here to share with.
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I will likely be starting chemo(taxotere and cyclo) in the next few weeks (4 rounds/21 days apart) and I am considering the penguin cold caps. Can anyone tell me about how many pounds of dry ice is needed per treatment? I am looking at having approximately 8 caps and using 1 prior to infusion and for 2 hours post infusion. Also, I have read suggestions to remove the caps from the boxes and place them in large ziplock bags with crushed ice between the layers of caps in the cooler. This helps to keep the caps more evenly cooled and saves cooler space.... any and all suggestions are appreciated!! Also, is anyone using elasto gel mittens and slippers to counter neuropathy?
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Hi Sara, I'm not sure about the caps in bags. I had some other ice bags I was going to use for icing in the coolers and they cracked while in the cooler less then 1 hour. I think the plastic might easily get ruined by close contact to dry ice. I couldn't afford all those mitts and gloves. I use bags of peas for 1.00 a bag. 2 per foot and 1 per hand. I'm 7 weeks in and no neuropathy so far!
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Thank you for the comments. I love the sharing of information here. I use 80 lbs of dry ice spread out between two coolers. I was instructed to wear them 1 hour prior to infusion, all during and then 4 hours after. I have not heard about taking the caps out of the boxes but I kind of like that idea. Will be interested to see what others say about that. I have not yet submitted a claim for reimbursement to my insurance but that is my plan. My insurance will pay for 1/2 of a wig so I hope they will pay for part of the capping process to avoid a wig.
Bird-of-light.. I would be happy to share any information you'd like about my experience so far. I also started chemo four weeks after surgery. With the exception of hair shedding, I have found chemo to be relatively tolerable with only a few minor side effects. AC had more than what I've experienced with Taxol so far. Capping is a ton of work but so far has been worth it. There are many reasons women chose to cap. For me, I have long hair and the thought of having to start growing it out all over again was saddening. Secondly, I work in correctional facility and I didn't want the inmates aware of my medical situation. For some, they see that as a sign of weakness and think I'm incapable of doing my job.
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Phila, so you used the boxes that the caps came in inside the cooler? how many pounds of dry ice did you use each time? yes, the peas sound like a real money saver!! thanks for your response!!
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thanks Trixie!! Yes, I ready about using trash or large ziplock bags on a post from years back. I've read every post
anyway, seems like the wear time depends on the specific treatment. I haven't spoken to the folks at penguin yet, plan to do so Tues/Wed. After, I should know how long and # of caps. Can I ask you how many caps you use per treatment for the 80 lbs. of dry ice?0 -
Quick question- I was just reading the instructions and it mentions getting dry ice slabs, but we are getting pellets. Is that okay? The company is putting them in 8 pound bags for us. Do the instructions change?
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Phila~ AWESOME tip about sucking on ice to fight the mouth sores, do you suck on ice only during your infusion? the whole day of infusion? always? thanks again for all of your information posts, they are great!
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hi Sara, you suck on ice throughout entire infusion. It's funny, before I started chemo I heard all over about ice sucking and haven't heard much about it since. But I did it and have not had oe mouth or taste side effect! Actually not one feeling of nausea either so who knows... I'm not about to stop now though;p
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Phila~ Fantastic! I have been getting worried about the mouth sores and wonky tastes.... I'll do it! thanks again for showing up for all of us like this, I know you must be tired and have a million things to do, so thanks
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I get mouth sores and neuropathy in my hands and feet that goes away after a week. With the cold capping, I just don't have it in me to make anything else cold! The mouth sores I get don't hurt so I don't care about them.
I'm running in my 7th half marathon in the morning. It was supposed to be my first full marathon until stupid cancer messed up my plans. I'm excited and nervous. Chemo has really drained me. I could run 16 miles 2 months ago and even though I've kept running, I have to mostly walk now. I'll be happy if I can finish at this point!
Ah well. Next year...
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Chewing on ice definitely helped prevent mouth sores for me. I didn't do it faithfully my first round of chemo and got a few mouth sores. After that, I did it, and no mouth sores at all, and I never had taste changes.
For my regimen (TCH), it was only the Taxotere that had a high risk of causing mouth sores. So, I sucked on ice 15 min before Tax infusion, during it, and for 15 min after.
Welcome all the newbies. I have very limited time right now and can't respond to all the questions, but this FAQ may help. But keep posting here where the majority of posters are!
https://community.breastcancer.org/forum/6/topics/...
Also, here is the success thread with pics for inspiration:
https://community.breastcancer.org/forum/6/topics/...
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Sarahrae- I have 8 caps total...four in each cooler. Also in each cooler is a 10lb bag of pellets, two large slabs and two brick sized slabs of dry ice. The slabs fit together perfectly on the plastic cap boxes. After I am done with a cap I put it back in the cooler to get cold again. It takes about 12 caps total to complete the 6-7 hours I need to cap for. The first two caps are worn for 20 minutes for a quick scalp cool down and then the others are changed every 30 minutes.
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Sarahrae- I have 8 caps total that are put into two coolers. Also in each cooler is a 10lb bag of pellets, 2 large slabs and 2 brick sized slabs of dry ice. The slabs fit together perfectly over the plastic bins the caps are in. After I use a cap I put it back in the cooler to bring it back to temperature as it takes me about 12 caps total to complete my 6-7 hour capping time.
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I'm starting my first session tomorrow and I'm stressing about it. I worry the caps won't be cold enough or they'll be too cold and I'll get frostbite. We could only get pellets, so I wonder if that changes my schedule for cooling the caps. I e-mailed the company, but I'm not sure if they'll respond on the weekend. Ugh!
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Happy Sunday -
Sheri - Re slabs vs pellets- our supplier didn't have standard slabs and it was hard to get the right fit in the cooler with slabs so we used "pellets/dust" i.e. ground slabs with great effect. WE had one of the coolers they suggest, but I couldn't find another and so i got a marine cooler which was actually much more insulated and had wheels, which was nice. We found it took 4 hours on ice for the caps to get cold enough (from frozen, in boxes.) One morning we forgot to put them on ice at the right time and we did the ziplock plastic bag technique after consulting with PCC ( instead of boxes) and it did work to get them much colder- but that would mean after a few hours they would be too cold , I would think.
I was really worried about frostbite especially in those spots that are really sore when you are on the first couple of caps, but I had none. Moleskin on forehead hairline, use a bit of cotton fluff to protect the actual hairline ( rub in on the gluey bit) or leave the sticky backing at the edge so as not to pull out more hair. Mini pads cut in half or moleskin on ears and back hairline.
Trixie -I have continued to shed and shed and shed too. Thursday was my last DD Taxol, and today was the horrific hair wash day, which is always hard, and there is still lots of shed, BUT I still am not even close to bald. Funny, there is even a spot on the back of my head the got really sore after one of the treatments and I worried about frostbite or a pressure sore - and it is growing back there!
Re ice chips and frozen feet/hands - I did neither as I tried to drink warm stuff due to the length of capping and how cold I was. With DD taxol I couldn't bear the thought of 4 hours of freezing hands and feet too. So I did neither, took B6 and L glutamine, and have a little half-numbness on the tips of my fingers, upper lip ( weird!) and tips of toes. IT was only after the third dose that it persisted for the two weeks til treatment, and I did have more symptoms the day after chemo with hot feet this time - but so far no more progression. Not painful.
AS for mouth sores, I get a white yucky sloughy feeling tongue and am put off by food for a few days, and will get a couple of sore spots ( like when you eat too many sour candies) on my tongue, but no actual sores. However, I get cold sores normally and am on preventative acyclovir, so that may be what is saving me. I cut my dose in half, and got a little mouth sore right away…
I only like to drink ginger ale and eat toast...
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Wow shedding started on day 17 on the button.
its not as horrible as I thought but man I barely touch my hair and only run a brush or pick lightly thru it once a day. Taking a lesson from last time when I went bald and just using a mirror to apply makeup and put my contacts in and out daily. It is what it is and I'm committed to cappung three more Taxoteres to prevent permanent hairloss. I have treatment no 2 on Thursday and will be past the halfway point. Think this is going to take a lot of attivan, friendly support and focus in other things like work and painting around the house. Maybe staining my son's playset too... 0 -
Hi, Sheri!
I had a little frostbite after my first treatment so on my second, my CCTherapist put some gauze between my exposed scalp and the caps and it went much better - no frostbite this time! It also seems to have worked just as well. My third treatment is Wednesday...dreading the cold but it seems to be working so I'll stick with it. Good luck
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