Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks for your replies, Ladies.
I'm not sure I should start contacting other reps now that I'm dealing with Geralyn already. I don't want to create a mess... If Geralyn doesn't have anything for me on Monday, maybe then I should? I don't know. She said she could have them shipped for me today from California, from the manufacturer if I wanted, but the shipping & handling would cost me $400.
Angiel - a lot of the supplies you mentioned were promised to me by one of our local ladies. She left on vacation yesterday, but gave me a contact to another lady who has the supplies. I PM-ed her yesterday to coordinate where and when I could pick up the supplies from her, but haven't heard from her yet. Thank you for detailed explanation regarding the moleskin and the panty-liners (ha!) - that is very helpful.
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U4, I am on taxol/carbo every three weeks, third treatment next week. I had the heaviest shedding, like others days 18-30 (give or take). Then it slowed way down. Still a little here or there, but not massive. Advice: do not be afraid to wash your hair. Your hair sheds normally with each wash for starters. But it will appear to shed more if you don't wash it every 2-3 days. And further, that causes scalp buildup (which can clog follicles) and matting/tangles. Neither is good in this situation. Just have a little faith and wash and comb your hair as recommended. If you have any buildup on your scalp mix a capful of apple cider vinegar in with your slightly diluted shampoo and let it sit for a couple of minutes. That will keep your scalp clarified. And I use the tangle teaser brush (brushing the bottom out first and holding my hair so it doesn't pull at the scalp). I find it much harder to get the tangles out of our longer hair with the wide tooth comb. Also, use conditioner away from your scalp to make the detangling easier. And follow the advice about getting that cap on with good contact. I lost hair around the hairline in back and around the ears the first time because of bad contact. I also use Toppik. It's great to fill in the part and anyplace else that needs a little bolstering. Looks perfectly natural and you can use it while you do chemo. Good luck. This is a nerve-wracking business. But I still have plenty of hair and great coverage. Oh, and the satin pillowcase is a must. And way back, one of the women suggested using a man's large white t-shirt instead of a towel after you shampoo. Wear it like a muslim head cover. Pure genius, and you don't have to walk around with cold wet hair dripping down your back. You can do it. Deep breaths!
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U4, here is a pic of me today, 45 days after first chemo, two infusions in. I've lost … I don't know, perhaps 15-20% of my hair. I have four infusions to go. You can lose a lot of hair and still have a lot. Weird.
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Hi BB .... in case this may help, I just checked the Fedex tracking number for the 14 caps we just returned (from CA) .... they are scheduled for delivery to Geralyn today (pending snow delays). I don't know her turnaround, but they came new to me from the factory and were cleaned thoroughly before we returned them, so hope there's not much downtime.
U4 ....(and everyone) ... I saw your questions and hope your experience is not like mine. I've vacillated on posting my experience, because this thread is full of optimism and positive thinking - and in no way do I want to discourage anyone from trying the PCCs. I just finished 6 treatments of TC (every 3 weeks) and have lost about 90% of my hair ... obviously far more than what I would consider successful. I followed PCC protocol (and was probably more stringent, washed only 1x week in cold water, very gently), no wigs or tight caps and hired a trained PCC therapist to handle the 'capping' as my husband felt he wasn't up to it. The only thing I didn't try was wearing the caps between treatments (a few have done that). My big shed began about day 19 and continued after 2nd chemo and just never stopped. It was a diffuse shed, although hair on the top of my head did go first .... and eventually I was left with some bangs and a shrinking 'fringe' around the back and sides that allowed me to look 'normal' with a cute 30" soft silk scarf (not cancer type) that I tied to re-create the 60's haha! Since my final chemo one week ago, even that is departing, but I do have short hairs - very fine - all over my head. Go figure! I resemble closely that Munster's character - who in retrospect may have had cancer!
I hope this isn't too graphic ... it's just that when I was reading this thread avidly for tips and others' experience, the more detailed the better, as it is all so foreign to most of us. I'm not sure I would do the caps again considering my result, as it is a tortuous process watching too much hair go, grieving the loss 24/7 and feeling like you are the only one this is happening to! And at the end wondering what the heck to do! Does it make sense to continue to follow PCC protocol when it is incredibly depressing to look at every day ... or do I just throw that wig on finally (when needed) and have faith my hair follicles will recuperate?
No one seems to know why .... PCC therapist, oncologist, etc .... my oncologist said that one of his patients came with bags of ice she secured to her head with duct tape ... and she kept her hair! Some of my observations have been that chances are better if you are pre-menopausal vs post-menopausal (me) due to hormones; and helpful if you have a really thick full head of hair to begin with. My hair was fine, but fairly thick. I colored the roots to cover grey (no peroxide) so was 'typically' damaged. I had 2 lumpectomies before chemo .... don't know if prior anesthesia played a part.
From my heart I wish you all the best experience possible and will keep in touch with this thread. It is always worth a try - the common factor is that this group loves their hair and is MOTIVATED to do what it takes to save it. I was one of those and completely support everyone's efforts. If there is a silent minority out there who shared an experience more like mine, I would love to hear from you to know I was not alone! And to gain advice on how you transitioned to accommodate the lack of success.
Best, Jane
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Jane, that's tough to hear and I'm sure tougher to experience. I feel for you. Was the shedding heavy all the way through?
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I had a similar experience. Was supposed to receive the week before chemo. They wound up being shipped overnight (at a cost of a few hundred dollars), and I received the night before chemo. I was anxiously awaiting them and had watched the videos so was ready to practice using themthe night before chemo - as soon as they arrived. You can also ask if there are some that can be shipped from the factory if Geralyn doesn't have any available. I got them in the nick of time. Good luck!
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me right now!!! Looks like a medieval hat
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Jane - I'm so sorry it didn't work for you. I think that yes, you should post about it! I think we all need to hear the real stories - the successful and not so successful and make our decisions based on other women's experiences. I don't want to build up false hopes either. I will give the cold caps a try, but I'm also getting a wig just in case.
Would you mind keeping an eye on that tracking number, if they do get delivered to Geralyn today? It might help me breathe a little easier.
Dakjo, ay-ay-ay, I'll be biting my nails! I hope it doesn't come to this, because all this cancer stuff is so expensive as it is. Geralyn did mention that she could have them shipped today from California to me, but it would be $400 for shipping!
Suladog - I will be having questions for you regarding washing the hair. You are on weekly Taxol if I remember correctly? The instructions I got so far from Geralyn say not to wash the hair 2 days before the chemo and to wash them only on the 3rd day after chemo. That leaves me just one day a week to wash, doesn't it? Do you wash your hair more often?
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U4 - here is a pic of me today. I just had my 3rd treatment yesterday (TC, every three weeks, total 4 treatments). As I mentioned before, my hair has thinned but no one would ever notice. Try to stay positive. These caps really do work!
PCH - looking AWESOME!!! You go girl
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You too, GPK.
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Loving all these pics!!!!
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BB,
Gerralyn told me the same thing but here's what I do. I wash my hair gently (cold water)with Deva no-poo which I use anyway even before chemo ad I have curly hair, put a bit of one condition on the ends then rinse that off. I use a small bit of deva styling cream on the ends for manageability , blot the excess moisture out with a micro fiber towel and let it air dry. I get my chemo( in the chair now) on Friday... I 'll be washing again on Monday and the on Thursday . I'm on my 4th treatment and havecwatery not had any hair oss. I have naturally very dry curly hair an this works great for me otherwise I'd also have only one day for washing that's what at is working for me
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Thank you, Suladog.
No-poo - ha, ha, first I though you made a joke, but I looked up Deva and that's what they call it. My hair is straight-ish, so I'll have to use something else.
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BB - I also washed twice a week on weekly taxol. No problems. As a backup plan if you don't get the caps on time you could always postpone your first chemo - I know someone else, at least one person, on this thread did that.
Jane, definitely good that you posted about your experience. I'm so bummed for you that they didn't work!
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Jane, thanks for sharing your experience. Your story's a reminder that there's no guarantee. Not sure about your pre/post menopausal theory. I was post menopausal (age 52) when I used cold caps.0 -
what great hair!!!
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PS Jane, yes, thank you for sharing. We posted simultaneously and I was a little thrown for a sec. I would say do whatever makes you feel your best at this point. If it's a wig, so be it. (I still have mine should I need it.) Or if a splurge on great scarves or cool hats or just going commando would help, do what will help you feel your best. It was both brave and helpful to share your story in CC company. I hope anyone else out there with a similar experience will pipe in. This site is filled with really terrific women and I'm grateful for all of you.
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Wow GPK, if I look like either you or Suladaog towards the end of my 16 treatments, I will be overjoyed!! I expect my major shedding to start in 7 to 10 days and then I'll start bagging it for reference. I also have been wrapping my hair in a big old t-shirt post shower and that does work nicely to absorb the water.
BB, I hope you hear something back from Geralyn shortly. If not, I too would be inclined to postpone my first treatment.
Jane, so sorry to hear about your experience with the caps. How disappointing & frustrating! I noticed as I read through pages & pages of past posts, it seemed that people who didn't have as good of results simply stopped posting. Left me sadly wondering about several users.
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I have been saving my hair out of the shower drain just to check. In fact I started doing that about 2 wks before I started chemo so I'd have a reference point ( yes my new show HaIr Hoarders will be starting on the Bravo Netwrk this fall) and have lost anything other that what normally comes out.
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Just got a call from Geralyn. She has my caps, yay! I'll be setting up the pick up now.
Suladog, looking forward to your Hair Hoarders show. I may invite myself as a guest star.
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Okay, I love you all for responding and posting pictures! My day 18 shed looked like the huge bag posted earlier. I washed it and lost a ton! I had my second treatment Wednesday. I think I've started to slow down some. I can tell you I did go to Sallys and buy the toppix to try. Right now though I could care less. I just got my neulasta shot and am feeling eghhhh.
I agree that after looking at the rest of my hair I didn't have it pulled tight enough at the top. I am using PCC. Geri has been a great wealth of information for me. Thank the Lord! My oncologist is watching me with great interest, as he doesn't believe these "things" work. Everyone that saw me at the infusion center was shocked and said typically I would've most of my hair at this point.
I also purchased a sulfate free shampoo, but when I looked on the back it has Lauralsulfate in it.......so maybe that is where I went wrong to. Can anyone recommend a shampoo?
I am capping in between once a week, just out of the freezer. I'm going to bump it up to twice a week.
Ladies, I have felt so lonely on this journey, I cannot even begin to tell you how much I appreciate all of the responses you have given me. Just because I don't have a clue how to add anything to the bottom of my link, I'm stage 2B. 2.1cm, IDC, left breast only, double mastectomy, I have 2/4 sentinel nodes positive and I am 100%er + only. I am also 41 and a single mom and really appreciate the support you all have provided.
-Michelle
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Michelle, you're not alone in here. You're with us.
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Hi BB - the caps were delivered at 4:15pm Michigan time! YEA!!!
pch, I recall the heaviest shed was day 17 through aftermath of 2nd chemo, but it was continual and persistent ... particularly after chemo day & washes (all predictable except for the nonstop nature).
Thanks, all of you who have had a chance to respond ..... I'm grateful for your open-mindedness and feel your sincerity..... I won't scare you with a photo unless someone asks!
Best, Jane
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here's me after 4AC and my tenth taxol last wed. Two more to go...
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sorry my prev pic is so big. Here's some of my moleskin patches I use for my temples/ forehead
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I use thinner moleskin cut out in a rectangle for my ears ( I cover them totally so it's hard to hear) and I have extra little 1 inch strips by 1/4 inch for the back of my ear. No frostbite problems so far. Can't wait to pack them up March 5th though and send them back. Good luck to everyone no matter what they choose, or how it works out. I know I would have been devastated at first if they didn't work, and I had the clippers ready to go before I started, and a wig picked out and ready to be ordered. So hugs to those that suffered through the cold and still lost. It sucks. But good for you for trying.
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Looking fine Gatomal!
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Michelle, I think breast cancer can be a lonely journey even with a loving, supportive spouse. It's difficult for anyone who hasn't been through this to understand. I am also single and my kids (probably much older than yours) were away at college during my treatment. I was lucky to have wonderful friends who helped me cold cap. Many women on this thread, some who are still posting and some long gone, also helped a lot. You are not alone- we get it and are here to cheer you on and offer support. Please keep posting and sharing your progress.
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Oh and there are no stats on me because I am the random ovarian cancer interloper, Stage 1, surgery, six rounds of chemo. Being that the big C is the Emperor of All Maladies, I'm camping out with you guys if that's ok. (I initially landed here because there are so many cold cappers. I stayed because everyone was so cool. And because you know what PFC really stands for … Have a good night, ladies.)
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I continue to be amazed by the many women who are capping and the significant success so many have!
I had to go short, but not a pixie, after shedding stopped. But considering I had pretty harsh dose dense ACT, I felt great I did as well as I did. No wig. Just needed a scarf folded as a wide headband to cover thinness on scalp on one side forca few weeks (3)
Best wishes to all you ladies. My advice might be to work at not stressing each day at the hair that you do lose. I sometimes wonder if the stress of that for the duration of chemo was worse than if I had lost it all.
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