Cold Caps Users Past and Present, to Save Hair
Comments
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Well the only way we could do it is to postpond chemo for 1 week. This is doable but it's kind of stressfull too, to reshedule all that...
At this point any decision is better that no decision because we're stuck not being sure what to do. So you may be right about not pushing this issue in our case... Correction: she actually lost about 25-30 % of her her, not 40%. It became thinner over course of 3 months on Taxol weekly, still looks fine and she's not wearing a wig yet... She's been off chemo for 2 months while having mastectomy. Now her hair almost stopped falling out. And tomorrow she's shceduled to start even more agressive AC chemo. We're doing everything we can to try to minimize all the bad things, therefore we feel soooooo upset that we found out about cold caps so late.... It feels like a failure... Some people say that its' not as effective for AC. Is that true? We still can't decide on whether to try to arrange it.... I called treatment staff, they said they don't think it's right to use the caps but they won't stop us if we want so. Her oncologist is not available today to ask if she wouldn't be mind.
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Well the only way we could do it is to postpond chemo for 1 week. This is doable but it's kind of stressfull too, to reshedule all that...
At this point any decision is better that no decision because we're stuck not being sure what to do. So you may be right about not pushing this issue in our case... Correction: she actually lost about 25-30 % of her her, not 40%. It became thinner over course of 3 months on Taxol weekly, still looks fine and she's not wearing a wig yet... She's been off chemo for 2 months while having mastectomy. Now her hair almost stopped falling out. And tomorrow she's shceduled to start even more agressive AC chemo. We're doing everything we can to try to minimize all the bad things, therefore we feel soooooo upset that we found out about cold caps so late.... It feels like a failure... Some people say that its' not as effective for AC. Is that true? We still can't decide on whether to try to arrange it.... I called treatment staff, they said they don't think it's right to use the caps but they won't stop us if we want so. Her oncologist is not available today to ask if she wouldn't be mind.
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Dear SccS,
I had AC followed by Taxol. I lost at least 50% of my hair and so far everyone I have spoken to that has had AC has said about the same or more. I'm not sure how the results will be when you start with Taxol first. The caps are very sucessful with TC.
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SccS, It is not a failure, almost NO ONE knows about cold caps. My daughter just happened to stumble across them on the web about a week before I was due to start. I guess all I can tell you is if you decide to use the caps, I would use Penguin, which you have to rent. No matter what brand you choose, chemo would have to be postponed. Cold caps do not work quite as well with AC, but several on this site have had good results using them with AC. Also, I would never allow a treatment center to dictate whether or not I keep my hair.
Bottom line, they are expensive, so your finances may have to be the deciding factor.
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So my wife finally started AC chemo without cold caps.... so be it. We're hoping to get through that chemo, hair issue aside...
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Good thoughts for you and your wife SccS...
Try to keep the lines of communication going as that was an issue with my husband and I.
Hugs for you both.
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SccS: I am happy to send you my writeup of my PCC experience if you send me your email; it is loaded with pointers including the hair care protocol, nutrition, managing SEs, etc. Hair loss is one of the biggest side effects of chemo, and it is completely within bounds to want to manage it as best possible.
Also, cold stimulates hair growth, so using cold caps will stimulate new hair to grow and it will recover much more quickly. The cold caps also protect the hair follicle from permanent damage, which is really important with Taxol and taxotere.
Yes, it is frustrating that word does not get out faster about this in the US -- I am one of the early US users (first 100), and it's grown like crazy in the last 2.5 years, but there are millions of women in the US who battle this disease who need to know that this is an option available to them if they choose.
Your wife is so, so lucky to have you by her side!
Best to you both,
Susan
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So does anyone have any tips to minimize the post chemo shedding? It was good to hear I'm not the only one experiencing this but after barely shedding DURING treatment shedding so heavily afterwards is scary!!!! I take all the supplements, still wash in cold water every 2-3 days but nothing seems to lessen the falling!
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hbb - Try not to worry. I think it will be fine.
I'm still shedding a lot at eleven and half weeks PFC and it is disturbing as I would like it to stop, but judging by my roots, I have more than two inches of healthy new growth on the hair still there. Even with all the shedding, I really don't think I am going to lose it all.
My hair has certainly gotten thinner overall and the longer ends are thinner in volume and getting whispy looking due to breakage from being lightened. Chemo seems to have damaged my bleached hair at the hairline so some of the strands are breaking at the junction of bleached and new hair. That must be why Penguin says not to color before chemo. I wish I had heeded that warning! Oh, well.
So now I keep my hair swept behind my ears to make it look thicker. But the good part is, I still have full coverage and I believe it will stay that way even with continued shedding.
In fact the new uncolored hair on the lower parts of my head reach down quite far below the base of my skull and I can see it is thicker in volume/numbers than I had thought. I also seem to have shorter hair mixed in with the long which may be the rest of broken hairs or may be new growth entirely. I am not sure which, yet.
I definitely have half an inch or more of new hair growing in my two formerly bald frostbite spots, so if the hair is growing there it may be growing elsewhere on my head too. You probably have new hair growing all over you head as well. You just can't see it yet.
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I am now 19 weeks pfc. The shedding has slowed quite a bit. I shed a little when I wash my hair which I know is normal, but I still seem to shed more while I'm combing it out. I blow It dry like once/twice a week and it makes a huge difference. Still have full coverage but thin. I have been trying to get it cut monthly to get the dead stuff out.
My hair is starting to feel the same as before, just starting, so I know there is hope.
Hang in there it's a very hard process, but it has worked.0 -
Has anyone out there put on a wig after 3 months? My hair is getting extremly thin & the shedding hasn't stopped yet. Just wondering how much more loss the wig would cause.
Thank you!
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I used clip in extensions. They helped alot. I bought ones that were the same color and used them daily. My hair sylist cut them for me so they would blend into my hair. Many of the girls use them.
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Hortense and Leveled, thanks for the encouragement. My leg hair has started to grow back ( very sparse!) so I figure maybe my hair has too and I just can't see it yet. I also wondered if maybe the new growth causes increased shedding. Either way, I'm not bald and thank goodness my hair is curly so really only I notice how very thin it is.
How long did you both wait before using warm water to wash your hair again? The weather is getting chilly here in Michigan and washing in cold water is not that fun!!
I'll be 8 weeks PFC on Friday.0 -
Reneerodin - I also used clip in extensions post chemo. It really helped a lot.
Leveled - so glad to see you checking in! It has been so long since we spoke...you have come such a long way! So happy for you!!!
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hbb: don't go to warm water or normal frequency hairwashing until you have completely stopped shedding. For many of us, the PFC shedding ends kind of abruptly. My last chemo was June 21, 2010, and my shedding stopped -- in about a day, just stopped out of the blue -- around Halloween that year, so about 17 weeks. It wasn't heavier than during chemo, but I wasn't expecting it. New hair regrew throughout, though I didn't realize it until around Thanksgiving when I suddenly had 2" hairs springing up all over, esp. at the nape where I lost about an inch's worth.
Even though my shedding stopped that Halloween, I think it was Thanksgiving before I was brave enough to use warm water again.
Susan
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Hi Ladies...this is a question for those of you who have returned to normal hair care. My hair is a mess - new hair coming in that sticks out all over, old hair dry and lifeless. What (safe) hair care products have you found that work to tame the new hair halo/old hair straw issue? I'm only washing 2x/week so as not dry my hair out more, and I had my hair trimmed to get rid of what I comfortably wanted to get rid of, but I'm not about to cut my hair short after working so hard to keep my long hair, lol. Any ideas?
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I use Organix shampoo and conditioner and a deep conditioner. The one I use is there Moroccan Argon oil. I wash only 2-3 times a week and I use both conditioners every time I wash. I leave the conditioners on for several minutes. I color my hair on e a month with Naturetint and it is much less harsh. I also use Organix Morrocan Argon Oil styling gel when I style my hair. My hair is so healthy now but I did also go shorter. For the hair sticking up I would use hairspray to hold it down.
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Question for all of you....I used the cold caps during my first chemo treatment yesterday. Seemed to work fine except I ended up with redness/soreness where my bangs are (~2" back from hairline). I protected forehead with minipad but this seems quite uncomfortable. Anyone else have this happen? Suggestions? Thanks!
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Hi CKK, Just a thought from my experience, but the sticking out new hair for me ended up being that my hair went from mostly straight to curly. The new hair may not only be healthier, but also naturally curly. The interesting part was that my pre chemo hair also got more curly as the new curly hair grew in. All I can say is to embrase the change- You have hair!
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HI 301724! You may want to try moleskin (or both) on your forehead & over your ears. You can get it at any drug store. Also was thinking....if you are using the dry ice method, maybe it was too cold on that part of the cap. I know some ladies have gotten frostbite so be careful! Good luck to you! : )
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Hair styles while doing chemo with cold caps... my natural hair is thin and a scrunchy won't stay in very long. Anyone have any suggestions for a non pulling way of keeping your hair back or up? It's very windy where I live and if I let it fly, it gets tangled and then more strands come out I think...
I may end up wearing bandanas the old triangle way to keep it back.... I welcome all advice. First tx of T/C was 14 days ago, so far so good.
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I wore a lot of headbands. The soft, cotton thick one's or thin elastic ones. This would just keep the hair out of my face. I also wore my hair pulled back in a loose ponytail with the end pulled through so it looked like a loose bun.
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I use SeaChi hair growth formula.
It is a conditioner that you leave on your hair for a bit, then rinse.
I can tell a difference in my hair and it is growing faster.
Their products are expensive but they have coupon sales.
This week till Oct. 10th you get 50% off by using coupon code PARTY55.
They have a website.
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I am now 12 weeks PFC and have started using Nioxin # 4 shampoo and conditioner which is for thinning hair that has been chemically treated. I really like the difference it is making after just two shampoos. My hair is looking as if it has more life in it and is less dry already. I'd read about Nioxin somewhere and ran across it at TJ Max.
I still use cool to cold water to wash my hair, but I have been blowing it dry on the cool setting of my hair dryer.
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Thanks, all. Yes, Julia, my pre chemo hair is much more wavy than it used to be, and I love it! It looks a lot more thick this way. The issue is the fuzzy "halo" of hair that I have, combined with the very dry pre-chemo hair. My hair is about 4 inches past my bra strap in the back, so it's quite long, and it looks pretty bad since it's so dry.
I happened to be in a salon with my daughter yesterday, and the stylist recommended Moroccan Oil intense hydrating treatment for damaged hair. She suggested putting it on after washing, and wrapping my hair in a damp towel for 30 minutes, rinsing out, and then sealing with conditioner. My hair looks a lot smoother and feels softer today. I am hoping that using it regularly will rehabilitate my straw hair!
301724, I bought moleskin sheets from Amazon, and made a template of my forehead out of waxed paper (you can draw on it while it's pressed to your forehead). Then I cut the custom shape from moleskin and put it on my forehead. A bit of work, but the coverage was perfect around the hairline and eyebrows, and no discomfort.
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Some guy just made my day! I was driving our old pickup down the highway with the window open and my long hair flying in the breeze - which felt soooo good to be able to do! - when I heard an appreciative call out from a truck going the other way. After giving a quick look around to see who it was for I suddenly realized I was the only possible object of his attention as no other driver was female and he was looking at me. That felt unbelievably good after all I've been through this year. The best medicine ever! He'd be chagrined to know my age if he had seen me closer up. I haven't had a whistle or shout out in years and thought I never would again, especially after cancer. Thank you Penguin Cold Caps!
internutz1 - I used bandanas sometimes when it was windy or my hair was particularly grubby looking betweeen shampoos during chemo.
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I've spent the last couple weeks reading this entire thread, and I want to thank everyone who has contributed over the years - I have learned so much here! Special thanks to those who continue to check in and offer advice long after your treatment is finished and you've returned to normal hair and hair care - I hope to be one of you in a few months!
I have completed 3 of 12 weekly Taxol treatments using Penguin Cold Caps. I am lucky to be treated at a facility with a medical freezer so I don't have to buy and haul dry ice. I am also lucky to have a PCC "rep" here who has been invaluable in giving me advice and training my helpers. I am asking a whole lot of my friends who are helping me - I am so grateful to them! My oncologist was neutral about my using PCCs, and I haven't had any negativity from nurses as so many of you have experienced. Unfortunately my oncologist never even mentioned cold caps as a possibility, despite the fact that his facility has the freezer. I found out about PCCs because between my first and second appointments with the oncologist a friend told her sister about me and my certain hair loss, and the sister said she had heard something about using "ice caps" to save hair. I started researching it and here I am.
So far so good - minimal if any shedding on day 17. (Or is it 18? Do you count the first treatment day?) Is there anyone else out there who is doing 12 weekly Taxol treatments? Seems like most who have done weekly Taxol had Adriamycin plus something else first, which I know is far tougher on the hair (and the body in general). So far so good on the side effects too - minimal so far. Reading the "September chemo" thread just makes me so very glad I heard about cold caps before starting chemo!
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Howdy PatinMN and welcome. You get to be one of the potentially lucky ones who keeps her hair...with some loss. Don't forget to follow the hair care protocol too. e.g. washing your hair in cold water, no coloring or cutting, etc.
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Welcome, PatinMN! Good luck to you on your journey. It's sad that your MO is not telling women about the caps - perhaps your success will encourage him to spread the word. My MO was also neutral about the caps, until she saw my success, and now she tells every patient about them! Yes, this forum is full of wonderdul, comprehensive info for new users, with lots of people from all stages of treatment nearby to help. We'll get you through this, and then you'll pay it forward to others!
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Good Luck PatinMN! I like to drop in and help, because I know how much past users advice helped me when I was the new one. I am really surprised that your onc did not mention cold caps when his facility has a freezer. Obviously someone before you has used PCCs.
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