Cold Caps Users Past and Present, to Save Hair
Comments
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Peggy: My onc gav me Aloxi (stronger than zofran) and emend, as well as Decadron and Compazine. The Aloxi works great. Hope that it all subsides soon for you. I cannot stand that burning stomach feeling and nothing tasted good! Your hair will be fine! Praying for you and your family!
Cheyenne: Glad your AC is done! You are beautiful and your hair will do great! Hopefully will start to grow back with the taxol! You are an inspiration..
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Susan: At what point after your first treatment did you notice any hair shedding? I am 12 days out after and just keep waiting. I don't even feel any tingling or anything, just dirty and icky from only washing every 4-5 days....
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Emster, for me it was about the 17 day, if you make 21 days with no clumps your good!
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Hi Emster,
I noticed my first hair shedding about Day 14. Actually, I noticed it "down under" before I really noticed it shedding on my head, but between days 14-21 it seemed hair was leaving me everywhere :-) I think it was heaviest a little after Day 21, right after my second chemo....and it went in spurts but I especially noticed my head hair leaving whenever I shampooed, simply because there is so much manipulation of the follicles at that time. (Mantra: gentle! gentle! gentle!) I was alarmed when it finally began, and kept half-believing everyone (doctors, etc.) who wanted to prepare me for my complete hair loss.
How great it is, still, to have proven them wrong!
I was surprised how long after my final chemo I continued to shed. I wasn't frightened, but it just kept going and going, even as I could see new hairs re-growing!
Yes, it felt icky from infrequent washing. It actually begins to feel better later on (at least, did for me). Enjoy the next few days of no shedding! And try not to panic when it begins. Frank Fronda says if you make it to Day 21 and it's not coming out in clumps, you are going to keep your hair.
Best,
Susan
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O.K. Cold Cap ladies~
Just call me the "Product Tester." My sister just loaned me something called Phyto Nourishing Cream? You put on a pea size drop after towel drying your hair. WOW! My straw-like chemo hair is actually laying down very nicely. I was going to order some until she told me the price...$26 for a teeny tiny tube? I'm going to be smart and just keep her tube.
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Do any of you have before and after pics? I'm curious as to how everyone looked before and after. I'm just starting this process. 2nd Chemo next week. I'm expecting shedding to begin by then.
This whole process is so stressful, but I keep reminding myself that the pain is worth it to save my hair. Much better than waiting for it to grow back over years right?
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Thanks you guys! Will prep for the next few days:) Anxiously waiting to see what happens.
Michcon, here we go again soon!
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Jill, I noticed you're in Atlanta. I just got diagnosed and am going to Georgia Cancer Specialists in Alpharetta for the first time tomorrow. Where do you buy the cold caps? They told me they don't have them.
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Me before starting chemo...
Me 2 weeks after finishing chemo...My hair is pretty gray at the moment. I used to highlight it - not sure what to do with it right now.
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Hi Girls!
Thanks for all your kind thoughts and suggestions....the nausea us better, I can handle the tired spells. I am eating smaller, blander meals...I think that is helping, too.
I am using Elasto-Gel Caps, and today is Day 20.....my hair did not really shed much at all until about three days ago....I decided to keep each day's hair loss in a sandwich baggie, just for to see how much I did lose. Well....talk about a shock....normal hair loss until then, and the last few days baggies that are quite full. My daughter took a photo today, and as soon as she sends it to me, I will post it here for you all to see.....BUT.....I am so glad to hear that if I don't have any clumps coming out in the next day or two, that I will most likely just continue to shed. My hair is very noticeably thinner, the part is more evident, but, I am still 'comfortable' with the amount of hair on my head. My once thick pony tail is a mouse's tail now.
But, I am glad I chose to use the caps. The Elasto-Gel Caps are available from Kansas City, MO, and come very quickly and I paid $75.00 each for mine....no rental or deposits. I very happy with them. They slip down on your head and we wrap with Ace bandages. I did learn to fold them in half before putting them on the dry ice, so they don't have such a flat bottom. (The first time we sat them on their tops, and it made kneading neccessary, but laying flat on their sides is better and faster.) The hair care is wash once a week, rinse if you must, and comb very gently with a wide tooth comb.After the last few days of such heavy shedding, I was so relieved to hear that if I make it to day 21 with no clumps I am doing well....so I am hoping no clumps appear. My daughter and I were going to look at wigs tomorrow, but maybe we will just go shopping! LOL. I thought with such big hair loss the last few days, I was bound for baldness.....now, again....thanks to you girls here....I have a reprieve and hope.
Oh....I don't know if it is better to leave my hair down, pin it up, scarf it...or what is the best and gentlest way to care for it when I am awake and when I am asleep. I remember my Mom wearing a scarf around her head to protect her hair-do.....LOL.....now I wonder if I shouldn't do the same,.
Any ideas?
Thank you all....! All my thoughts and prayers for all of you.
I will remember to post my pictures before and now (with my bags of hair)....hopefully tomorrow.
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Hi Peggy,
I have long hair and tend to toss and turn when I sleep, so I wore an old-fashioned silk "hair bonnet" type thingie (purchased from a beauty supply store) every time I slept. It kept me from having my hair be pulled while I slept. Congratulations on getting to Day 20 with such great results! You are the first person I know who has used the Elasto-Gel caps and I am pulling for you!
Probably the best way to wear your hair is with a method that does not pull the roots.
Best,
Susan
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My hair BEFORE starting chemo... 0 -
My hair 3 weeks AFTER chemo... 0 -
My hair right now - way too many grays! 0 -
I have a tip for nausea. The Sancuso patch. It worked great for me. They put it on you during chemo and it stays on about a week. I think it is Kytril in slow release form.
Good luck to everyone.
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Ang7: You look awesome!!!! Yeah! What an inspiration... Thank you for sharing. Day 15 today so waiting anxiously to see what happens:)
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Ang7 - Thank you so much for posting pics! You look great! Thanks for the inspiration to keep going.0
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Thanks~Can you tell that my daughter and I celebrate with sweets?
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Hi Everyone....I am still hanging in. But, my hair is unbelievably thin....Yesterday, I shed the most of all the days...no bald spots, but very, very noticeably thinner. Today's shedding is less, so I hope it will slow or stop. No pictures today, but my daughter should be here tomorrow with the photos she took a couple of days ago, and I will have her take one then so you all can see how I look right now. I didn't expect to lose this much hair, and I forget this is not a 100% success treatment....BUT...I am still glad I am doing the caps, and that I still have some hair....thin as it is. Strangely, it is most thin in front of the ears near my temples. I am eager to post photos, so you all might compare my hair loss to your own. I was taking all the 'hair' vitamins, until the nausea became to strong, and I have no idea if that helped during the first week or not, but this last week (Treatment AC # 2) I just couldn't force them down. Now, I am back taking them, and hope it helps. But, overall....I am doing okay, and I DO still have some of my own hair...and for whatever reason, I am glad of that. My best to all of you....
Thanks, Susan for the tip....I bought one of the caps.....it reminds me of Little House on the Prairie night clothes.
Ang7.....WOW!!!!! your hair looks really great....and what a beautiful little girl you have....just like her Mommy!
PS...i bought a wig and feel like a traitor....but, I intend to carry on with the caps, unless it all disappears.
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WhichWay2run~
Keep your positive attitude! Know that we are thinking of you.
I am so glad we have options like these Caps. It was one thing that kept me going through my treatment.
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ang7: what treatments were you on?
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whichway2run, dont give up, i still have hair after 4 AC and 4 Taxol i still have 8 more to go, though i do where a wig my whole head is still covered and a bit past my shoulders, just very very very thin,, ive lost about 75 % of it, i have no bald spots. if i put it in a pony at the nape of my neck its about a centimeter in diameter. I can go out without a wig, but people can tell,with a small scarf or hat they see my hair but its not that noticeable. i used a gallon freezer bag to save my hair in and its about 3 inches thick solid, yet i still have hair, i shed everyday a lot still, ive heard from the nurses and chemo women that thier hair started growing back after about the 5th Taxol, id post a pick of before and now but i dont know how, send me your e mail and ill send them to you if youd like' dont give up and dont stress, (yeah right) how long do you where your caps for? and what tempture?
love Chey
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Emster~
I was on TCH. Taxotere, Carboplatin and Herceptin...
I had read some of the thread about Taxotere and how some women never get their hair back and that is what had me researching all this before treatment...
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Chey:
If you have enough hair you can use the clip-in extensions like I do. I had taxol, carboplatin and herceptin (my last treatment was 2/2010) and I am still getting herceptin every 3 weeks. I kept most of my hair but it thinned so much that I bought the extensions at Sally Beauty Supply and they were real hair and the same color. I could probably go without or get my hair cut shorter but a couple of extensions and it's almost the same as having my long thick hair. I wear them all the time and can pull them up, braid them (like in the picture) or wear them down. It really helps with the thickness of my hair and it's growing like a weed now so I won't need them too much longer! The fishing picture was from 2 weeks ago and the one below was during the beginning of chemo with no extensions.
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Didn't mean for that picture to come in soooooooooo BIG! Sorry!
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nosunshine, wow you look great!!! thank you, i will have to do that, while its so thin i could probably pin it up or braid like u did, might not be able to notice as much,
i cant wait to be done!!!love Chey
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I will be finishing up with the Penguin Cold Caps in two weeks. They worked! If someone out there will be starting Chemo soon and needs the caps, let me know. If you are in the San Francisco area of California, I could possibly deliver them to you. I have 14 caps. By the way, UCSF has started a Cold Cap study and they hope to get 50 participants.
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Michcon: Good luck with #2 TCH tomorrow. Here we go again! So far so good with my hair...
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Hi Everyone!
Great pictures Ang7! You look great and happy with your daughter! My daughter and I love our sweets too!
And NoSunshine - looks like the sun is shining right behind you! I love fishing!! Glad to hear your hair is growing back so fast! Mine did too once I got past a month or 2 after chemo. It grew really fast!
Chey- Hang in there-you are a trooper! I don't think the wig is good for your hair if you get sweaty with it on, but you have to work. Maybe try those extensions! The picture you sent me looked good-but that was a while back But just think of all the chemo bombarding your hair follicles that you STOPPED. Yours will be growing back in no time! Give me a call sometime!
Emster- Hope your feeling better! you have to your so busy! Drink more water next time-you'll feel alot better I promise!!
WhichWay2run - AC is harder on your hair. You got thru the first tx-good luck with the rest of them.
Shadow2356-Never heard of the Sancruso patch-thanks-I'll pass it on!!
Michon- I know what your doing now-sitting in the chair with a cold cap on hopefully drinking water!! Hope Matt does a good job!!
lawlady-go to the penguin cold cap website to order them: www.msc-worldwide.com
sebm9 -- Great idea with the silk bonnet! Does your head get hot? Just wouldn't want your head to get sweaty.
Gad everyone sounds and looks good! Have a Great week!
Geralyn
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whichway2run. i sent you a pm0
