Cold Caps Users Past and Present, to Save Hair
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KCMC - i don't know what your diagnosis is. Mine was DCIS, and IDC OF 3.5cm, ER PR andHER2 positive and zero node involvement. I had 6 rounds of TCHP (Taxotere, Carboplatin, Herceptin, Perjeta), followed by a year of Herpectin, and started Arimidex last Aug. all covered by my insurance. Last chemo was Jul 5th of last year. I used PCC Cold caps, Lost at least 70% of my hair almost all PFC. Currently have 70% of my normal volume back. Although disappointed by the result, but I would do it again. Good luck with your treatment.
I did not cold capwhen I started herceptin only infusions. Only during my 6 rounds used the caps.
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Tried to post picture but it said I'm not allowed to post links at this time
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Thank you KD2016
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KCMC - Cold cap companies are familiar with all chemo regimens and can provide you guidance onhow well the caps may/may not work with your regimen. It would be a good idea to check other infusion centers also. My infusion center had freezers which was extremely helpful and we didn't need to haul the caps every single time.
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KShorten- are you still taking Viviscal? Your results are amazing! Thanks for the update!
I am just about ready for another box of Viviscal, just finishing my 2nd box. I am wondering how long I have to take it. I can't really tell if any hair has grown on my head. My eyebrows are good, thanks mostly to castor oil. Lashes are still gone, but I just started the castor oil on them a week and a half ago, maybe.
I understand I have to wait until my hair is stronger before I trim it, but I am wondering for others how long they waited until they got a haircut?
My hair is thin all over, with just a few long strands in the back. I would love to trim the back and eventually get a nice short cut all over. But for now, I use a little butterfly clip to pin up the back strands.
Hopful - thanks for the idea about using a butterfly clip. I think I look better with it that way.
Someone posted about Western European hair not working as well with cold caps. I am certainly American, but my ancestors are from Western Europe so I might have the wrong kind of hair for Cold Caps - thin. It's too soon to say for sure, but if my hair grows back, I will consider it a success. I just didn't think it would take this long to see growth on my head when I read that other people saw hair growth during chemo or soon after.
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KD2016 - You lost most of your hair PFC??? I'm also on TCHP and I've had good luck so far. I just had my 5th treatment out of 6 and I've lost 20-25% so far. Now I'm nervous that I won't be so lucky when all is said and done. What do you estimate your hair loss was at your last treatment?
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Soxfan75 - I lost about 20% until my 5th treatment. After that and mostly with 6th and last round I started to have heavy shedding and by Oct had maybe at most 30% left. No bald spot just overall very thin and totally damaged hair. I followed the PCC's guidelines to the T even not drinking caffeine. I got a very short pixie cut before returning to work on Oct 10. ppl who didn't know me couldn't tell really. Everybody's different and just because I didn't have a good result, doesn't mean you'll have the same. I don't regret the stress and work at all. I couldn't deal with the alternative. Even now my body hair has not grown back at all. My hair is not growing back as fast as it used to either..
Again not two experiences are quite alike so don't fear the worst. Hopefully at the end you'll keep most of your hair. Good luck
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Hello ladies,
I had my BIG shed this morning, almost 7 days after my second cycle of AC. I have already had 4 cycles of THP and until today, I have lost approximately 40% of my hair.
Question for you: if you had AC/are having AC, when did you stop shedding/when did the shedding slow down?
Thank you.
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This is me just out of the shower after 2 of my 4 treatments of TC. I've been wearing a hat in public and have been researching how to tie scarves as I am not confident that i will have anything left by the time I finish treatment. I plan on continuing to cold cap only for the hopes that regrowth will be faster.
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Powderpuffin,
I had AC DD every two weeks, 4 cycles - my first big shed was day 21ish and then another fairly substantial shed about 4 weeks after the last AC. I am having 12 weekly Taxol treatments, so it occurred at about the 4th week but I think it probably was residual AC as it is the harshest of the two. Could be wrong! Since then, minor shedding to report and have about 50% or so of my hair still. It is very scraggly at the ends. I had a layered cut unfortunately so now that so much is gone there is even less in terms of volume. Oh well, it is passable still. I knew that AC DD and 12 Taxol would be a tough regime on my hair so am being realistic. Finishing the cold caps as it may help return hair faster. If I need to wear a hat or scarf at some point I will but for now I just look like a lady with bad hair. Is everyone else noticing "bad hair" on others now too? And the good haired people, well, it hurts to look at them! lol This Too Shall Pass!!
Good luck,
Anne
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Does anyone know how Toppik effects cold capping? I used Toppik on Sunday (mostly on my part) and I still have it on because my wash day is Saturday. It's now too late to wash my hair because my treatment is tomorrow. Will I be ok? Any suggestions? Thanks
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ykh- I highly doubt topix will interfere with capping
Klt- everyone is different! Like I said, another Asian woman I met kept all her hair. Results are based on a myriad of factors. Everyone is taking a gamble when they cold cap - there are no guarantees.
Have you ladies thought about extentions? I have quite a bit of length, but I'm thinking about getting some extentions after chemo to help with lost volume. I'm thinking a couple of inches off and then some gentle extentions. Does anyone have experience with this?
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GoKale4320 - Thank You and yes I'm still taking Viviscal, I'm on my 3rd month and I was told by a friend that you really need to take if for at least 6 months so that what I'm planning to do for now.
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kshorten: do you take Vivical once you are done with chemo or do you start to take it while you are you still being treated?
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Hello,
How long has everyone waited to color their hair after capping? I think penguin says 6 months but can't find my notes. Has anyone tried Naturtint?
Thanks!!!
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KShorten- thanks! Do you still take 2 a day or have you scaled back to 1 Viviscal pill a day?
MichCali- some people have successfully colored their hair just a few weeks after PFC, but Penguin says to wait 3 months and use a vegetable-based (no amonia, no peroxide) semi-perm color, and 6 months for a regular color. CatGirl used Kuene brand successfully.
Sherryowang- I have read that some people have used a topper which I guess is similar to extensions. Probably better to wait for hair to be strong to hold it.
Rdsm- I think your results so far are typical. Try not to despair. Once you're done with chemo, figure out which remedies you want to try as in supplements and castor oil or essential oils. I do like castor oil. My eyebrows, at least, have never looked nicer.
I started the Whole 30 diet a few days ago with the hope that it would help me through radiation and help my lymphadema, tight muscles, and flexibility. Whew, great hope for this. I also need to change my thinking about food - snacks and deserts, stress eating, in particular. I sort of jumped in without much planning and I have cheated a bit, but slowing adhering to the rules. Also, thinking that the better eating might help my hair - though it isn't all organic.
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KShorten- thanks! Do you still take 2 a day or have you scaled back to 1 Viviscal pill a day?
MichCali- some people have successfully colored their hair just a few weeks after PFC, but Penguin says to wait 3 months and use a vegetable-based (no amonia, no peroxide) semi-perm color, and 6 months for a regular color. CatGirl used Kuene brand successfully.
Sherryowang- I have read that some people have used a topper which I guess is similar to extensions. Probably better to wait for hair to be strong to hold it.
Rdsm- I think your results so far are typical. Try not to despair. Once you're done with chemo, figure out which remedies you want to try as in supplements and castor oil or essential oils. I do like castor oil. My eyebrows, at least, have never looked nicer.
I started the Whole 30 diet a few days ago with the hope that it would help me through radiation and help my lymphadema, tight muscles, and flexibility. Whew, great hope for this. I also need to change my thinking about food - snacks and deserts, stress eating, in particular. I sort of jumped in without much planning and I have cheated a bit, but slowing adhering to the rules. Also, thinking that the better eating might help my hair - though it isn't all organic.
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hi everyone, just an update I'm 4months PFC my lashes are completely back to normal thank goodness. My hair is coming along hopefully I'm a month or two the top part will be long enough so I can wear my hair down. I still wear my hair up in a small pony tail very thin though or in a small clip. I'm taking viviscal it's My 2nd box. I don't s suggest taking it while on chemo. My hair doesn't shed just your typical everyday normal shed. I still only wash once every 5 days. Hair still not back to normal but getting there. Hug
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Hi all...My wife begins her Chemo treatments tomorrow and wanted to ask a question about the cold caps. Luckily a woman that we know went through chemo as well and had the elasto gel caps, so she has given them to my wife to use as well. We have 3 caps and I would like to know how much dry ice we need. My local food market sells it by the 1 pound cubes. How many cubes do I need for the 3 caps? Thanks so much in advance!
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I am not sure about the cubs but peguin cold caps recommends 40 pounds of dry ice for 4 caps in a cooler everytime you are cold capping. We did it once and it worked. You better pick it up early in morning the day of the chemo.
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LyndaDeLo--my husband is more than happy to talk to you since he was the one in charge of the ice and the timing. He's full of tips. I will private message you his email address if you want to email him tonight.
MichCali--I colored with Clairol Natural instincts at 4 months. I've done it twice. It washes out in a few weeks but I put the color spray on it when it looks like it's fading in spots. I'm 5 weeks PFC now.
Go Kale--I did a cleanse from SimpleGreenSmoothies.com which had a smoothie for breakfast and real food for snacks and meals. It eliminated the basic inflammatory foods like dairy, sugar, gluten, alcohol and meat. It really helped me start on a vegetable based diet. Helped my lymphedema too. I have maybe 5% of that left compared to a few months ago when it was really swollen. Only I can tell now when I compare my inner wrists. Still massaging every night.
And by the way, I'm starting to have my lashes fall out AGAIN. I saw a space in my left lashes the other day and it's gotten wider. I guess it's not uncommon to lose them a few times the first year. I hate this!!
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Hi LyndaDeLo-
Welcome! That's so very generous of your friend! Have you tried googling the instructions for that particular brand of caps? That might be the best course of action (unless someone here has used those caps and chimes in with their experiences and advice), or if you can't find it online, perhaps locating the number of the manufacturer and getting someone on the phone who can advise on the dry ice amount.
The Mods
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Hi,
I just joined this discussion. I am using Penguin caps and I had chemo #5/6 on June 13 with my last treatment scheduled for July 5. I'm literally counting days for the last treatment and last cap, and planning to have an "I'm done with caps" celebration.
I feel very thankful that so far I have kept all my hair:) I cannot wait to be done with the last capping day as for me it gets harder each time. Must be that my tolerance and fatigue has cumulated over the last 3 months. Just wanted to chime in and say that I have blond hair and it seems to have worked well for me. I think my husband has been very sure to make the caps very cold and very snug. It helps to have a strong helper as I don't think I could handle and mold the caps as he does.
Good luck everyone!
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11 down 5 to go!! Yay!! Hang in there!! Hair is thin and scraggly but still there😁
I can tell you my shedding is very little now on taxol for those of you with the ACT chemo. 7 out of 12 done on taxol. It seems I have a little fluff growing on the balding/thin spots.
Caps were cold today as my hair is so thin but the premeds they are giving me seem to help tolerate!
Have a great week MJ
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To those that asked, I started my Viviscal after I finished my radiation, I could have started it after the Chemo but didn't hear about until then. And yes I'm still taking 2 pills a day and will continue with that regimen until I've done it for 6 months and then may switch to 1 a day for a while.
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hi
I am planning on using Penguin cold caps. My might get AC for four times and TC for 12 weeks every week. or four rounds of just TC.
Can anyone share what did they experience as far as hair loss goes? And what shampoos they used? Also, what happened to eyebrows and eye lashes?
I am 39. A mom of two beautiful girls.
M
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Hi,
I am about to start round #2/4 of TC. I am using Chemo Cold Caps. The first round (#1/4) was on June 5 and somehow I got frost bite on my ears (blistered and peeled) and the front part of my scalp which is now peeling. I have really fine and thin hair. It has begun to shed in the frost bitten part, left of my part. I doubt it will be healed by Monday (June 26 - #2 round day) so am nervous to see how to protect that spot. I think these areas must've gotten wet during the cold-capping. Looking for tips if anyone that has been through this and can give any about the frost bite...
Other than that all is going well. Chemo side effects were very annoying but manageable... I guess - they lasted a full 9 days with a headache being the worst (also minimal bone pain, 2 days of constipation and luckily no nausea). I gargled 5x daily with salt and baking soda and that relieved the dry raw mouth. Plus, I am drinking more than 72 oz of water every day.The Nuelesta shot was also giving side effects but I take the claritin day before day of and day after the shot.
Hoping and praying round#2 is at least as tolerable - my onc tweaked a few things so am anxious to see if that lessons the 9 days of side effects or at the very least the headache...
let me hear from you if any tips you can pass along. Thanks in advance!
Oh and I am KENRA clarifying shampoo and KENRA spray on leave on conditioner (rec by the Rapunzel Project) every 3-4 days - or 2X a week beginning 3 days after chemo/coldcaps - plus no washing 3 days before chemo and coldcaps
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mzuberi - if u look back through the posts over the last 10 pages you will find tons of answers to these questions and see lots of pics of hair.
The A in the Act is brutal on hair loss. I have finished 4 dose dense AC and I am using penguin cold caps. I had tons of hair to start and maybe a couple pages back I have a pic of my hair now super thin after the 4 AC and 7 out of 12 taxol.
It's been worth it for sure I have a month left and can go out and still no wig.
I have used acure shampoo and conditioner. I also bought toppik which when your hair starts to thin if you sprinkle it on your head it helps hide the scalp.
I also bought hair nets off Amazon so the cold caps would not get caught in my hair. I bought panty liners for my head and ears that I cut to keep from frostbite and headaches.
I bought elastogel hand mitts to ice my hands during taxol and some ice socks for my feet to stop my nails from falling off and to help with neuropathy and so far so good!! I also got my nails done with gel because it protects it
Some chemo regimens are easier on hair. The first try is definitely the hardest then you get the hang of it and it's so easy now!!
As for brows and lashes I have almost all mine I put castor oil on my brows at night but I've heard I might lose them after ch
I had severe nausea and vomiting so my premeds include heavy nausea meds hopefully you will just take Tylenol and be good. For everyone it's totally different on pain level.
You will do great! These ladies are so helpful and strong
Suthngrl- do you put pantyliners on your ears and forehead? I also use a layer of moleskin on my forehead then the panryliner I look amazing haha then I cut a pantyliner in half for my ears
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MJPow- when did yours shedding start slowing down? How many taxol treatments?
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Suthrngirl--Elostogelgirl got frostbite on her ears, maybe private message her for advice.
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