Cold Caps Users Past and Present, to Save Hair
Comments
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Speaking of precise....do you think it's okay that for my last 2 caps (last hour after treatment ended), they were -29 instead of -32? I had to wear a 3rd cap before my treatment started b/c my chemo wasn't ready so I had to re-freeze an extra one and it didn't get cold enough. Is it also okay that I wore 3 caps and started 10 min into the 3rd cap instead of 10 min into the 2nd cap?0 -
i don't think we have to be totally precise. We forgot the headbands the first time and had to make do with short bungee cords! And last time we had trouble getting the second round of caps cold enough.
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pink - it will be fine :-) I went off piste all over the place from the strict regimen and I still have hair.
We used a rolling pin on the caps (also using hospital freezer rather than dry ice). Helped save my husband's hands...
Good luck and keep us posted!
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I used my caps for the first time today! Not as bad as I thought it would be, just a very long day. Thank God for my awesome helpers!
My only worry is that we couldn't get them to fit around my ears close enough no matter what we did. I have a small head so I can't imagine how anyone larger would ever get it to cover these areas. We used the bands and still couldn't get it right.
Any advice from the pros out there???? Only 15 more to go!!
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Do you have the eyebrow bands? Some women use those around the ears. Or you could use extra Velcro strips or bungee cords over that area to get the cap to fit closer.
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Pinkflipflop, are you on the Wonter Chemo group on Facenbook? I think I'm the only cold capper...
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No, I hadn't heard of that before0 -
I couldn't get a great fit above my ears either using a machine-cooled cold cap. I lost hair above my right ear and kept it covered with hair from higher up (made sure I didn't put my hair behind my ears). This hair had grown back by treatment number 5 (I had 3xFEC and 3x Taxotere). I had my hair cut into a "pixie", not too short so that existing hair could help cover up any thin areas.
I did have a few small bald/sparse areas appear on top of my head by treatment 3 and I covered these with keratin hair fibres (Nanogen hair fibres) - I still use them but my hair is growing back now so I use hardly any. I didn't need a wig and looked fine throughout treatment. People would not know that I am a cancer patient by looking at me.
I am managing eyebrow loss using an eyebrow pressed powder kit/flat brush and fine pencil - done artfully (takes quite a while every morning!) - didn't lose my brows and lashes until treatment 5 and even then they never came out completely. I use a soft eyeliner around eyes for eyelash loss - I have dark eyes and have grown to love eyeliner over the past few weeks. I have just finished treatment number 6 and have bought some Latisse to speed up eyelash growth and I will await the results with interest...
Best wishes.
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Hi Ladies - I'm completely new to this entire cold cap thing
I met my oncologist for the first time yesterday and decided on treatments. I need to do chemo four times (3 weeks apart) and the doc recommended the cold cap. What brand does everyone use? She mentioned Penquin Cap? She told me I would def lose my hair if I didn't use it and that she has seen great success with the cap. HELP! I have 3 kids (11 and 8 year old twins). Hoping I have an option here to save some of my hair. Thanks in advance for everyones suggestions!! THIS CANCER THING SUCKS 
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Goldenpaws - Congratulations on having a great doctor! So many haven't heard about scalp cooling using cold caps, much less Penguin brand. It sounds as if you are in great hands. There are other brands, but most on here have used Penguin. I did. I think a few pages back there were some enthusiastic posts from elastogels users, I am sure those ladies will soon chime in.
If you will be on Taxotere Cytoxan you should be able to keep your hair. It is harder to keep with ACT. Your hair will probably get thinner in overall volume due to shedding of your oldest hairs which are weaker, but you will keep full coverage of your head. People who don't know you well will not guess that you are going through treatment. I didn't want to lose my hair as I feel my hair is part of my identity, so I used cold caps to keep it, and I am glad that I did. I have met women who chose to use cold caps simply because they did not want their children to see "Sick Mommy". Whatever your reasons, welcome to our network!
First, I suggest visiting these websites for information, if you haven't already done so.
http://www.rapunzelproject.org
Cancer does suck, but you will beat it. It is not a death sentence. It is a disease that you have to fight.
(((Hugs)))
Sarah
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Most of us on here use the penguin cold caps, which you have to rent. A few have used the Elastogels, which you can buy from Amazon, but you have to buy several because they have to be switched out every 20 minutes. I'm using the Penguin caps and so far they're working. Go to penguincoldcaps.com for more info or read back over these threads. Good luck!
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The most recent reports from women on this thread who have tried Elastogels have been very good. Even though you have to buy the caps, in the end they end up being considerably cheaper than Penguin. And you could probably re-sell them to a thankful future capper on this thread.
I'm a successful, very happy Penguin user, but had I known Elastogels worked so well, I would have gone that route.
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I used Penguin too and also did taxotere and Cytoxan for 4 cycles - 3 weeks apart. My son was only 4 when I did it....he still does not know I had BC and he's 8 now. Caps worked for me....photos and info in my blog.0 -
my last infusion on Thursday. Sent caps back to Geralyn on Friday. When will I see new growth in my bald/thinning areas? I've lost a good amount but kept enough to look and feel good, just curious I guess.
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HollyD - Congratulations on completing chemo! You may see growth at any time depending on the area. I found growth on spots where I had suffered small frost bites and lost all the hair long before chemo ended. I believe that was because the hairs simply broke off along with the bits of frozen scalp that I lost as largish dandruff pieces. They were not "shed" from follicles. If that was the case with you, your bald spots may soon fill in because the hairs will not have stopped growing. My spots began feeling a bit prickly as the still growing hairs cleared the surface and the hairs were normal looking, although black in color which I had never had before. Those spots are no longer black. I have no idea why.
Overall hair regrowth of hairs that were shed during chemo has to do with your hair follicles normal growth cycle. Follicles of hairs that were shed earliest, say around your second infusion, which is about day 21, would have gone into their normal dormancy periods of a few months before starting to regrow a hair shaft. That means they are probably regrowing right now, but you can't see them yet. Others will follow according to when they were shed.
I thought mine were not regrowing, and began to worry that they might never regrow, when I still couldn't see any about two months after chemo ended. One day I suddenly realized that I had what looked like an army of 1/2" long new hair coming in all over my head between my old hairs, but those new hairs were almost transparent in color and quite delicate in nature - not as thick as normal hair, so they were hard to see. I think it was just how follicles start sending out new hair. Very soon the diameter of the hair shafts coming up out of my scalp thickened and when it did they gained color so that I could see them more easily.
My hair grew at about half to three quarters of an inch a month and filled in quickly. I take Biotin and BioSil to support my hair growth. My hair dresser has been very impressed by the difference these supplements have made and now recommends them to other women.
Take care of yourself. You have been through a lot these past months. (((Hugs)))
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I know this has been answered somewhere on here, but how long after chemo ends before we can shampoo normally
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Well I am a user of cold caps the elastrogel caps that I got from Amazon. We bought 4 caps and buy dry ice in a big cooler and bring it to the infusion treatments. I just finished my last infusion on Wednesday and the caps did work. My hair is thin anyway and I did lose some hair and it thinned all over I still have hair on the back and sides and the front hair line. I do have to wear a wig to work but when I go out I just wear a cap because I hate wearing a wig. I think I did not leave on the caps long enough after my first infusion and only left them on 2.5 to 3 hrs and should have left it on 4 hours. And then maybe it was not down enough on the top of my head but I guess I will never know. If in two weeks I still have the hair that I have now I will be happy and say that the gel caps did work. Feel I am still ahead or the game. I have not shed any for the last 4 weeks so hopefully it will continue not to fall out. I wash my hair with baby shampoo every day and use a cup in the shower to rinse with no direct force from the shower head. Will post in about 4 weeks to let you know the outcome. But I definitely think that it is cheaper to go with the Elastrogel caps rather than the penguin caps and you can get the same result.
Good luck everyone
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Fabian, were you able to get the caps cold enough by only using four? I have eight of the Penguin caps that we switch out an hour before chemo, during the infusion, and four hours after. I'm wondering if you had more, you might have had better results
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Fabian- Not quite sure "you get the same results" as PCC. Most PCC users don't have to wear wigs at all. If you add the price of wigs to the price caps I wonder if it is cheaper overall?
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Penguin sent me 14 caps. I cannot imagine capping with only four and keeping them cold enough.
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Success with cold caps (any brand) means not needing a wig or other head covering and that should be the expectation of anyone considering cold caps. I think with elastogels it's harder to get a good tight fit on your head. Most of the women here who have had success with Elastogels have followed the Penguin cold cap protocol...leaving them on for 4 hours afterwards, infrequent hair washing etc.
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Holly, congratulations on your last chemo. Feels good to send those caps back, right? I am now 1 1/2 years PFC and still have new baby hairs growing around my hair line. It definitely takes a while for your normal hair growing cycle to get back in sync although you should see some noticeable new growth beginning several months after your final chemo.
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The Elastogel caps provide better coverage than the Penguin caps. They reach past the nape of neck. But, they don't provide the velcro straps that come with the rental of Penguin caps, which are used to tighten the caps close to the scalp. They would be easy to make. I've seen the 2 inch elastic and velcro sold at the sewing supply shop. I would recommend using a minimum of 8 caps, to ensure they can be re-chilled to the proper temperature.
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I am glad to hear others have been using other caps and finding some level of success. There are not so many choices for us and the cost can be so high that the more options out there, the better. I love hearing that more and more of you girls have finished chemo and still have hair! This makes me smile today! 0 -
Hey girls! Just a reminder- there is a financial aid department that works with Penguin Cold Caps. I got mine 100% paid for. I've posted the info here before but if anyone else wants it, let me know. I can give you the contact.0 -
Hi Cappers!
I'm popping in to give some words of encouragement. I just had LD flap surgery (surgery #6) and I haven't been here as much as I hoped to give others what so many gave me. I am 8 mos. PFC. I have my long hair and another set of hair that is curlier and some of it is fitting into my ponytail while some still has a little more growing to do.
But here is what I want to share...
The other day at my hairstylist's while she was using the organic stuff because I still haven't taken the plunge back to normal coloring, I asked her if she thought it was worth it.
Was it worth the expense? The time? The anxiety? The inconvenience to friends and family? The oddities of caring for my hair in bizarre ways? Her reaction was one I've never seen before. This modest and shy woman burst forward with a a loud barrage of affirmations. She compared me to her other clients who had not capped. She went on and on with one reason after the next as to why she is 100% in favor of capping. And then she looked and me and asked if I could possibly be thinking any differently. Nope.
This post is dedicated to those who are anticipating the struggle or currently managing it.
Be well. Be comfortable. Be at peace.
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I agree 100% Warrior Woman. It was all worth it. This is me with my little love on Thanksgiving. While I was only 1 week PFC and not feeling all that great, I looked fine. My family was able to really celebrate. I askedmy husband later how different the holiday would have been if I walked in bald. Spirits would definitely not been as high for everyone nor for me. Being able to keep my hair meant so much more than vanity. It meant my dignity, privacy and and added bonus, it helped my family get through this horrible disease because I didn't look too different. Just a little more tired, a little spacey, a little more wobbly in my heels, but it was me they see - not a cancer patient. The holidays would be completely different if everyone was feeling shocked looking at a bald head. As I've said before, bald should not be the only right of passage for breast cancer survivors.
Tomorrow I get to go to my follow up with my BS who insisted cold caps didn't work and I would lose my hair. I am totally doing extra to my hair to look good tomorrow just to push it in her face - even though I know she is happy for me. She is a wonderful and very smart women but this is one cae where I'm happy to say she was wrong!
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Has anyone noticed how good looking a group the women on BCO are? Hoot Hoot Daniella!
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thank you. Not bad for a cancer patient even with the puffy face and flat hair. I turn 40 on Thursday. My only wish was to be healthy but look like me. Thank goodness I found PCC and this thread.
Btw, for my friends battling the grey roots, I found Style Edit spray is AMAZING. You can really cover a lot of acreage with it. I bought medium brown for my darker brown hair. Available on Amazon and Ulta. Cheaper than Rita Hazan spray. For the hairline, I use Touchback marker with that little comb it comes with so it doesn't go onto the scalp. The spray can get messy on the hairline but a baby wipe clean it up easily.
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"It meant my dignity, privacy and added bonus, it helped my family get through this horrible disease because I didn't look too different. Just a little more tired, a little spacey, a little more wobbly in my heels, but it was me they see - not a cancer patient."
Well put, my sentiments exactly!
Best of luck going forward Daniella. Take good care of yourself as you heal. Your daughter is adorable.
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