Cold Caps Users Past and Present, to Save Hair
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Hello again,
I'm the one who had already lost her hair, but was hoping to eventually get some of it back by using the cold caps. I'm now in my 4th month of Abraxane, 3 weeks on, one week off.
I used the Penguin Cold Caps last week for the 1st time with Hubby helping me (actually he did ALL the work) and using the dry ice. Due to my already being bald, the cold was almost unbearable to me...even with a wig cap and pieces of gauze over my head per instructions from Frank and Geralyn. I finally put panty liners on the spots that felt like they were burning. It was very hard to get all parts of the caps the same temperature, too, with the dry ice. For instance, the back might be still too cold, while one of the sides would already be above the usable temperature. But, we completed the day, racing home with me in a cap, and then going 4 more hours after we got home.
I went into this with such high hopes, but now I think it's just going to be too difficult for me. I think if I still had my hair, I would go ahead, knowing I could probably keep most of it, and also the hair could "pad" my scalp, protecting me from some of the cold (and possible frostbite). The other problem is that this (using the caps) would never end in my case, since I will have to continue some type of chemo forever. Also, so many CC users, it seems, are on a 4 - 6 treatment regimen. I'm sure I would continue it for that length of time. Also my treatments are weekly, with only a break every 4th week - which is where I am this week. So I have this week to think things over and decide what to do. It makes me very sad to give up, but I really think that's probably what I'll have to do.
Peachy
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Oh Peachy I am so sorry. I know how much you wanted this to work.
I am wondering... if you do decide to continue, can you get your chemo center to accept a donated biomed freezer from Rapunzel? I had to WORK on my facility to get them to accept one. A freezer would be so much handier than dry ice, the caps just stay in the freezer at the facility. A freezer also keeps the temp more uniform throughout the cap. Will Frank let you buy the caps since ongoing rental would be extremely expensive? I think he would. So, it's down to finding some sort of head covering that is equivalent to hair. That is a tough one. The caps should only hurt for a few minutes, and of course, should not cause frost bite. I will say a prayer for you to figure this out:)
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Sonnet, I had family and a friend for my helpers, but don't sell your hubby short. He may really like being able to do something to help you through this. Everyone wants to do something to help, and this is one time they truly can. It isn't hard, it just takes a little practice.
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Peachy,
Just wanted to chime in that I can totally understand what you are saying and doubt that I could have used the caps under your circumstances. Good luck with your treatments and my thoughts and prayers are with you girl!
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Peachy,
I'm so sorry for how hard the caps were for you. I think you should know my hubbie tried the caps on (he has limited hair) for "fun" after they had been on the dry ice...he immediately took it off yelling "OMG, how the h*ll do you do this?" He said it was incredibly painful, his heart rate skyrocketed, and he felt nauseated. I told him I didn't feel that way at all, that it was quite manageable for me after the first few minutes. It had to be that I had hair as a buffer. Soooo...don't be too hard on yourself (if you are) for having a tough time with the caps. And, after going through this, there is no way I would want to do it weekly and on a long term basis. It would just be too much.
I am so sorry for the loss of your hair. I know you are grieving that loss, and you don't want to give up hope that you can get it back again with the caps. However, don't make yourself miserable in that attempt. Hugs to you and support for whatever decision you make!!!
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I understand the point about not selling my hubby short - but I'm also not sure he can be there every time. I haven't even talked with PCC folks yet, so I'll try that!
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Sonnet - you may be able to get friends to help. When I had chemo I had more people offer to help me with hair than I needed. WHen people asked what they could do I said "I may need help on chemo days with my hair". I had 6 people volunteer to come with me and my DH. So I had my DH there every time and a different friend or my sister there for each treatment. You may be surprised who offers to help if you let people know what you need help with.
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Hi soltantio: The first day of chemo is counted as day 1 in the cycle. I was on a three-week interval, so I had 21 days in each cycle.
Then, when you have your final infusion, you get to count days PFC (post final chemo). Congrats - you are doing great! Keep babying your hair.
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Yay Soltantio! I remember when I went past the point in time that I would have lost my hair thinking, oh my gosh, do I really get to keep my hair??? What a feeling!
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Tomorrow I will be seven weeks post chemo. I did not shed much in the first few weeks PFC but then I started and haven't stopped. It's making me nervous. I have stray blonde hairs decorating my entire house. I notice them twined around banister railings and scattered all over my couch and rugs. One jumped off my head into the peach pie I was making two days ago - yuck.
I have noticed mentions in these threads by a number of ladies that at 6 weeks PFC they were also shedding more than usual, or heavily. I am interested to know from them if their shedding has stopped or slowed down and at what point it did either.
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I am almost at 15 weeks pfc and I am still shedding quite a bit. I have been washing my hair every three days. I take iron, silica and biotin, nothing seems to be working.
90 percent of the hair loss was after my last chemo, I have probably lost 50 percent of my hair so far. I can't afford to loose any more. There doesn't seem to be any answers out there. I to looked back on some of these threads and some shed for up to six months. I will have no hair at six months if this continues.
Does anyone have any growth at 15 weeks I thought I would have some growth as well. I have hair all over and full coverage except on my damn head!0 -
Leveled...I was shedding for a long time post chemo and then it just stopped. Hang in there.....I wish I had great advice. Hugs!
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Thanks mdg.....I feel like this is never ending. Is there a possibility it's permanent? I was thinking of going to see a tricolologist but afraid of what he/she may say.......?
Lisa0 -
Leveled - can you see if your hair has been growing? I lighten my hair and I can see by my inch and a half long darker roots that my hair has been growing steadily through chemo, so I know their follicles are working, or were. I just don't know why I am shedding so much now and why the follicles have decided to let some of the hair go at this point, rather than during chemo. I too am taking silica, biotin and iron.
I have to mention that the shedding started right after I started taking Biotin which was the first suppliment I started taking. It took me a while to find liquid BioSil and a slow release iron - which my nurse recommended using as it is less likely to cause constipation, so I began those about two weeks later. I am wondering if I should stop the Biotin, or was it simply a coincidence.
I do know that Penguin recommends taking silica right through chemo, but my doctor wouldn't let me. I also know it takes several months to show any effects, so I don't expect to see any improvement until late November.
Is there anyone on here who went through a PFC shed and can say when their's stopped?
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Hortense, I also started taking silica after chemo as well as the biotin and slow release iron 45mg. Do you think that the liquid biosil is better.
I do know that during chemo my hair grew as my roots were gray, I just don't see any new growth now which is what concerns me, or should I say keeps me up at night.
I can see thru to my scalp especially after I wash my hair.
I also had my hair colored with henna after 12 weeks and nothing changed, no worse no better.
I also heard that tamoxifen causes hair loss, I have been on that since June 18, not sure if your on that or started yet. That's also concerning for the next five years. I keep saying ok next week it will get better, but it's been a long 15 weeks and I don't see any change.0 -
11 weeks PFC and still shedding. It seemed to be slowing down but increased again at my most recent wash. I was under lots of stress for a few days and am thinking it may have been that, as I've heard stress can accelerate hair loss. Looking forward to the shedding stopping someday! I'm pretty sure my hair is growing on my head, but it's tough to tell b/c it is all the same color. It is growing on the rest of my body like wildfire, so I'm pretty sure I'm growing new stuff on my head. I better be!
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Hi everyone,
My final chemo was June 21, 2010, and I shed up until Halloween that year- 4 months. As one of the early US users, I didn't have many folks to compare with. At times I felt that all of my hair would slowly fall out just to torture me. Then, one day, it just suddenly stopped. Literally, in one day, just stopped. About a month later I finally felt confident I'd finished, and I began washing daily and in warm water again -- man that felt good. The PFC loss felt like an enormous amount of hair at the time, but in reality it equalled the amount I lost during chemo (I bagged it all, including at the gym. I still have the bag'o'hair as a reminder of what I did.) My hair had less body, and other than the thinness above the ear and the complete loss at the bottom 1" at the nape, I had complete coverage. I probably kept 85-90% of my hair, even with the PFC shedding.
My advice is hang in there, keep babying, and keep using cold as much as you can -- cold water, or even the Elasto-Gel caps if you've sent your PCCs back. The cold will stimulate new hair growth.
I have never heard of anyone having permanent hair loss after using PCCs
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I am 6 months PFC, and thought that I had not shed a lot during chemo, mostly because I didn't see much hair shedding after chemo #1. I now realize that I lost LOTS of hair (although not enough to tell!), because I have tons of new hair growing in. I lift up my hair in the back, and I have a three inch long strip of hair growing at the nape. I also have new sideburns, and lots of hairs sticking up like a halo all over my head. My hairdresser is amazed at the amount of new hair coming in. My hair has never been this thick. I am glad every day that I used the PCCs.
I went back to normal hair care at three months PFC. I had stopped all noticeable shedding long before. I colored my hair at 4 months PFC with no ill effects, although I did go to a salon that uses no ammonia or PPDs in their color.
I recently had my 3 month checkup with the MO, and she has been trying to convince others to use the caps after seeing my success.
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Congratulations ckk! My hair is now transitioning to normal after 2 years. My normal hair is wavy, but I've had uber-curl since chemo -- not just the newly grown hairs, but my existing hair got curly. It's at a stage now where it is wavy around my face, but at the chin and lower it's got the big curls. It looks like I put it in hot rollers -- I love the look, and am sorry to see it grow out. By about November I'll look exactly like I did before I began chemo - right now it looks very close to my profile picture. Inbetween, I've had bozo wings, baby curls, big boufant curls, and untameable hair halo. What a long strange trip this has been! I am so grateful I kept madly googling the night I found out I'd need chemo. I'm so glad I did this, and still driven to help women discover that they have this option. What a difference it has made in everything!
Susan
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Leveled - No, I am not taking Tamoxifen yet, I've been given Arimidex but am not to start it until after I finish radiation. I'll be switched to Tamoxifen after three years.
Like you, I am taking the liquid form of silica as I had read in several places that it is more easily absorbed than silca capsules made from Horsetail or Nettle. Besides, I am already taking enough pills, I'd rather take it in liquid. Also, I discovered it was what was used in a clinical study which proved it helped grow thicker, stronger hair shafts after nine months of use - see below:
Clinical study using 10 mg liquid silica a day:Arch Dermatol Res. 2007 Dec;299(10):499-505. Epub 2007 Oct 25.Effect of oral intake of choline-stabilized orthosilicic acid on hair tensile strength and morphology in women with fine hair.
Source
College of Pharmacy, University of Cincinnati, Cincinnati, OH, USA.Abstract
The appearance of hair plays an important role in people's overall physical appearance and self-perception. Silicon (Si) has been suggested to have a role in the formation of connective tissue and is present at 1-10 ppm in hair. Choline-stabilized orthosilicic acid ("ch-OSA") is a bioavailable form of silicon which was found to improve skin microrelief and skin mechanical properties in women with photoaged skin. The effect of ch-OSA on hair was investigated in a randomized, double blind, placebo-controlled study. Forty-eight women with fine hair were given 10 mg Si/day in the form of ch-OSA beadlets (n = 24) or a placebo (n = 24), orally for 9 months. Hair morphology and tensile properties were evaluated before and after treatment. Urinary silicon concentration increased significantly in the ch-OSA supplemented group but not in the placebo group. The elastic gradient decreased in both groups but the change was significantly smaller in the ch-OSA group (-4.52%) compared to placebo group (-11.9%). Break load changed significantly in the placebo group (-10.8%) but not in the ch-OSA supplemented group (-2.20%). Break stress and elastic modulus decreased in both groups but the change was smaller in the ch-OSA group. The cross sectional area increased significantly after 9 months compared to baseline in ch-OSA supplemented subjects but not in the placebo group. The change in urinary silicon excretion was significantly correlated with the change in cross sectional area. Oral intake of ch-OSA had a positive effect on tensile strength including elasticity and break load and resulted in thicker hair.- PMID:
- 17960402
- [PubMed - indexed for MEDLINE]
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I bought liquid BioSil through Amazon. It was recommended on several websites by women looking to grow longer and stronger hair.
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Hortense - thanks for the info on the biosil. I started reading a bit, and it looks like one study was done where it may also help with building bone. That would be awesome, if so, since so many of us are in chemopause. I'm going to read more, though, before proceeding. I always like to look carefully for possible side effects, etc, and run everything by my oncologist, just in case!
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My oncologist said BioSil was fine. I ran it by her before starting as she wouldn't let me take anything during chemo. I have also read that taking silica is good for nails and skin, so I am curious to see if it will make a difference.0
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I am going to start chemo on 9/17 with taxotere, carbopatin and herceptin. I am going to use the cold caps and am optimistic because of the number of women that have had such good results. I was interested in the one post in which someone said they colored their hair with henna when they were going through treatment. My hair is dyed dark brown and when it grows it is very grey. How did the Henna cover the grey. Was it gentle enough to use a few times during treatment?
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Hortense, thanks for the clinical information on silica.....let's hope it works. 15 weeks today and still shedding.....it's very upsetting.
Onc ok'd both biotin and silica, but after chemo was completed.
Happyfollic, I colored my hair with henna but at 12weeks pfc. I also have very dark hair and the gray was really prominent. Henna is cumulative so the first time it really only covered about 75 percent which was fine, better than nothing. I am scheduled again for September,salon said it would cover more. My hair felt good after it was colored. Pcc protocol is not to color until three months after last chemo, i was afaraid to do it earlier than that. I just wish my shedding would stop, I thought I would be well past this by now.
Lisa0 -
Thanks New Jersey about the Henna information. Just curious what did you do with your hair during treatments so that the grey didn't show so much.
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Happyfollic,
I used a colormark stick that I bought at ulta. It's a stick that you kind of paint on to cover the grays. It wasn't the best but it helped. It washes out when you wash your hair.
Lisa0 -
I used colormark too.
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Thanks New Jersey and mdg - I am so happy to have such a resource and thank you for sharing what has worked for you. Off to Ulta I go!!!
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I lost part of my eyebrows oh probably 4 or 5 weeks PFC? My lashes thinned, but never totally lost them all. Everyone is different, though...some lose all their brows and lashes at once.
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