Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks for popping in Cr77! I love to hear what to expect. I think we all come from the school of expect the worst, hope for the best when it comes to these cold caps.
Elastogelgirl--I know what you mean about the cold caps. I hid them in between rounds because something about them made me dread chemo day. Once we were doing it, I was fine. But right after #3, I couldn't bare the thought of #4 and those cold caps represented that day.
Lizjo--I have Penguin too. My infusions were on Wed so they said to wash Mon and not again until Saturday. Then I wash every 4 days.
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I want to thank everyone for their posts! I have been reading pages and pages of this forum since I learned last week that I have to do 12 weeks taxol with Herceptin every 3 weeks for a year. I so relate to many of you--I am a private person and so have shared my situation with a limited circle of family, friends and my employer. I am anxious about the whole cold capping process, and we are practicing for the big day on Friday.
I have a few questions: (1) I can't find a local supplier of the silica compound that PCC recommends. We have ordered from the UK, but won't be here for a while. do you have a recommendation of a product I can buy at a GNC or similar or from Amazon in the States? Is biotin a good substitute? (2) Is it considered OK to use a gray hair coverup like Toppix or WOW powder during treatment? (3) Do you know of anyone in the Atlanta area who is trained to do Penguin cold capping? My husband and sister are my team, but we wouldn't mind having a training session by a professional or have someone do the first session. (4) I'm not sure I understand the purpose/how to use the optional head bands. Any thoughts are appreciated!
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Hello!
Elastogelgirl - Congrats on last AC. You should have a 3 week break? Once you start on Taxol the nausea should go away and the capping shouldn't bother you. Great photos.. keep moving. I've been in a funk for the last two weeks so I need to get out.
My last treatment is tomorrow! Yay!
Anyone have a lot of build up on their head? I don't apply conditioner to my scalp but I've noticed some junk on my head. I don't have dandruff just build up in areas on my crown. it's gross..0 -
Runner - Love your ski pic! Great to see you happy!! You and I seem to have similar skiing styles..
Glad you love your hair now... I love to hear from you because you're a few months ahead of me and it helps me get the lay of the land. My hair is growing in darker than it was, although that lovely gray is still there. Jstan - thanks so much for your comments about Daniel Field. It's not too late! My MO asked me to postpone my color for a few weeks. Mad. But if I she suggested postponing and I didn't and then ended up with orange hair or no hair I wouldn't be very forgiving of myself. Hope you are well!
Lizjo - What an amazingly adorable photo - such a beautiful family. Thank you for sharing!
Luvmyys - best wishes on your last infusion. Hope your hair is hanging on. You made laugh the other day with your cellphone chatting, underwire wearing, bacon microwaving vision. I have those all the time. And then I add in the power lines and wifi and shampoos with chemicals and foods that are accidentally not organic. And breathing in at the gas station. Oh and the receipts at the store... Holy moly it's hard to be us.
Elastogelgirl - I can so relate to the thoughts of the caps and nausea. I started to cry and shake on the way to infusion/capping after about the 3rd time (I did twelve). I couldn't help myself - it was just an automatic response. Then somewhere along the line I got my cannabis spray and that at least stopped the shaking. It also stops the stuck in the rut thinking . If you're up for it you might give it a try. I hope you can find somebody to help you with biofeedback and wish you so much luck with making a change so you feel better.
CR77 - thanks for your update!
I'm with Catgirl on the washing.
Fastgirl - you will likely do well with just the Taxol/Herceptin. I wish I could be of some help with your questions. I've used Madison Reed and Touch Back root cover up but only after chemo was finished. If I remember correctly I'm pretty sure that others used root cover ups during chemo. Hopefully they'll chime in. Best wishes to you.
Good luck and good vibes to everyone.
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Luvmyys- congrats on your last infusion! It should be over or at least in the next few hours!I'm so happy you let me know I might release my PTSD on the chemo infusion cold capping visions and my instant nausea...I'm still struggling. I'll do fine then the vision then urp! My hair looks troll like...perfect description. But I'm holding hope I follow your footsteps! Please post more photos or PFC, and first color or whatever...I love to try to plan ahead!
I skied yesterday got my mind off the SEs..was hard but I'm doing great really! my hair got hot a couple times..paying a hair loss price for my skiing but can't sit around thinking about chemo.
One more note for all who are considering neoadjuvant chemo...I think if it's offered it's a great option! I'm doing surgery second so I have no problem with surgery pain or mobility. I'm getting out for some extensive excersise! I don't know what I'd do if I was recovering from surgery and doing chemo same time...
Thanks all
Hugs E
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hi luvmyys, I have noticed junk on my scalp. I noticed it last week I scratched and it looked like mud under my nails. So I kept taking it out with my nails and the mud like dirt kept coming out. But then I shedded a bit more once I brushed my hair. It all dirt from not being able to scrub our scalp
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hi all...
So I'm done with AC I have 4 Dose dense Taxol to go...do I have a chance...troll head
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elasto you still have a lot of hair! i wonder if cap contact with the area with hair loss can be improved?
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danix5, Mine came back 8 years later. Residual breast tissue near the skin at about the 7oclock position. It came back directly under my original biopsy scar. Surgeon suggested that it may have gotten seeded there during my biopsy. My biopsy was difficult. I bled (a lot) and had a huge hematoma that burst. Doctor first told me that the biopsy would not move the cancer, or "let it out", but after my mastectomy, they found traces of it along the biopsy tract... So, my feeling is that there was residual tissue left behind (they can never get 100%) and that cells were moved from the original site. I've read though that when it does come back, that it is often under a scar. My surgeon at the time even cleared more tissue around this scar and removed the scar itself and created a new one, but still...
![:\](https://community.breastcancer.org/resources/emoji/confused.png ":\")
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kechla, thanks for that cautionary tale. I too had a lot of bleeding after my biopsy, and a big hematoma (removed during my lumpectomy). I have worried about cancer cells running rampant due to all that bleeding, but I did have radiation that hopefully killed off any of those cancer cells that did escape. I guess there's no way of knowing for sure unless it comes back, perish the thought!
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Janetsam- thank you for your reply..we are using one tight wide band and three straps..elastogel does have contact issues especially when cold crinkled and frozen hard. My hubby pounds them out and I feel they are making contact. I have gotten frostbite on my ear and scalp.and icing in my hair.
Now on my last infusion last Friday my hubby is afraid to get caps so cold. He promised me they were at least -21 not the recommended -31 his idea is to change them more often like every 12 mins! This was the way they did it this time I was protesting but they have been in charge! I was on Ativan so I was really a mess...my brother said there was a little ice in my hair each time we changed caps...
. So I'm bracing myself! I hope they worked. At -21 they were more flexible making heavy contact...my brother was getting my actual scalp temps which were 64f I believe that is the recommended scalp temp but not sure.....my head bands are so tight my chin aches for days after.
I'm just praying I make it thru the taxol with out a huge bare spot...I'm going to jkeep capping to help save my follicles either way..
Hugs e
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Patin. The radiation should cover anything left behind. I think that would give me piece of mind knowing what I know niw
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elasto i know every situation is different but i lost a lot of hair after #1 with 25 min changes but for #2 and 3 and 20 min changes no hair loss that i can detect! my husband would just hand them to me, i would put them on stiff but they quickly softened as i pushed down on them, i would keep pressing them down all over my scalp much of the time they were on bcause i could feel where my scalp was losing contact with the cap with my hands. today is day 18 PFC no hair loss or scalp tenderness. I will say i am out of the woods on day 21. I had a CT today and continue to be NED!
Janet
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Fastgirl--I used Penguin cold caps. I am 2 weeks PFC. I had 4 rounds of TC. I did not use the Silica and I think there may have been a discussion about this about a month ago. I had already been taking Nature Made's Hair, Skin & Nails so just continued with that. Actually my nails still look amazing--they didn't peel nor split--so I'm hoping it helped with my hair too. I use WOW to cover the grays, LOVE that stuff! The headbands provided go around under the cap to ensure your hairline is covered. I lost most of my sides, you know when you pull your hair in a ponytail and you have shorter hairs in front of your ears? Yeah, I don't have that anymore. Those bands will cover all around your hairline. Then the black straps will hold it tight against you and the other one will hold your cap tighter on.
Luvmyys--I had that build up early on, round 2 I think. Haven't had problem since. I make sure my scalp gets washed when wash my hair.
Elastogel--it's interesting to see our balding patterns. My part is great but when I lift up each side of my hair--holy bald patches!! Thank goodness keeping my hair down covers it. Just can't go out on a windy day!! The WOW powder works wonder too to make it blend in.
Kechla--I'm only 2 weeks PFC and I'm thinking about BC coming back. I had a mom at school who was dx w/ BC this summer send me link to a video series called The Truth about Cancer. The 2nd video in the series talked about breast cancer and natural remedies that have been proven to stop BC. I thought I could incorporate some of these into my lifestyle. I feel like I'd be ignorant to think if I don't change something this won't come back. But I feel I had a healthy lifestyle to begin with. I just hate having this fear back. I still have to do radiation so I know I'm ok, just sucks to have the thought in my head again.
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hi all
So I'm looking at topix and wow products...I'm trying for blonde to cover up my mouse troll head and crazy grey with my top side thinning. Are you guys using this while cold capping? Or just PFC? I'm fine with my scarves but now I'm afraid of doing damage wearing head covering stuff too much. Does Topix work on medium blonde color?
I'm not greasy so should I just not wash? I feel I could go more than a week. My hair has some build up but it doesn't change day to day. Afraid to wash.
Did anyone do better with hair loss on taxol after AC? What about hair regrowth on taxol? Does this really do anything? Like cover the bald areas? My hair has slowed shedding each Ac treatment but it's getting super thin. I'm still so happy to have any hair!
My doc talked about hands and feet swelling on taxol...I'm back to wanted to ice them to try to avoid this! But Ouch urp! Skiing with swollen feet and hands?..need to continue to ski.. here comes my nausea just anything to do with ice, even chewing it which I did first three rounds.
Round four AC was my worse mentally! Urrrp. I did a lot better recovery wise on my last round after giving in on using some steroids pills post infusion. Skiied a little 30 mins xcountry on day 1 and then downhill on day 4 with visiting company to urge me on..5 hours of heavy excersise. I'm beat now! But the excersise and beautful weather helped my mind!
Thanks all
Hugs E
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Elastogelgirl, i used light brown Toppik through chemo and for a few weeks afterward. Our hair colours are similar and i think it would be the right shade for you. The bulb & nozzle applicator is worth getting, makes it a lot easier to apply.
Your eyebrows look fantastic. I used BrowFood eyebrow serum on one brow, and although i lost 90% of both eyebrows a month PFC, that one started growing back two weeks earlier. I did it for science
Not sure it is worth $80 for two weeks' advantage, but there it is. Lancôme waterproof eyebrow gel-creme is great stuff. I applied it with an angled brush daily and avoided looking altered.14 weeks PFC, and today it seems the shedding has finally slowed down. My weekly tiny baggie is less than half as full as it has been in the last two months. I have a nice extreme mullet hiding among the long hairs that remained on the top of my head. Very felt-like right now. Doesn't want to hold a part easily. Hoping for 80's volume in a few weeks.
Best of luck to everyone keeping their hair on.
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Pamela, My first diagnosis was DCIS and I did BMX so that I would not have to do radiation or chemo. Should have been less than 2% chance to recur but, seems like a little bit got left behind... This time, I have done 2 lumpectomies, chemo, radiation, and now on tamoxifen. Once I was done with my BMX previously, I decided to move on and not worry. I believe that worrying does no good. It just takes away happiness. That said, I was still diligent on checking myself and paying attention to my body (and caught this very early when it showed up again). I also improved my diet and exercise. This time, now that I am done with rad and chemo, I am starting to feel the same way. I need to focus on the good and enjoy my life. I made a pact to myself that I will monitor myself diligently and then allow myself to not worry about it all the time. Easier said than done, but we need to remember to be kind to ourselves...
Elastogirl, I used Toppix during chemo. It helped fill in the thinner areas. It didn't really do much for my grays... My hair looked a lot like yours and I used medium blonde. I wear glasses, so I just let my eyebrows and eyelashes go. They never fully left, but got very thin. Not too noticeable with my glasses on though. My eyebrows are fully regrown now (probably by about 8 weeks PFC) and my eyelashes are getting full enough that with mascara they look pretty good. Eyelashes took a little longer to come back than my brows.
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Willa- I will look into cannabis spray thanks..I don't use a lot of cannabis even though I have an ample supply...sometimes it causes me migraines.
I'm trying using CBD oil for sleep..I use about 1/2 the dosage I got.. around 1 am I redose. It's working! At least the last few nights post chemo on Friday. My sleep has been disturbed to say the least. I used ambien a couple nights ago and had trouble with my vision the whole next day-not worth it for me.
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Good Morning!
Day 1 PFC yay!
Elastogelgirl - You are so great posting the pictures. You look great and your really hair is holding up nice. Did you have a rash in the first one? My face today is really red. Keep your eyebrows as they are and ice if you can.. you have nice and full ones so if they thin you may keep some. I have eyebrows but they are the blondest hair I had so barely noticeable I color them in for shape now also are there are eyelashes on top but bottom is gone. Those both went with Taxol. I did lose most eyelashes right away on Taxol but I already have regrowth on them but again they are so blonde I can barely see them. I will probably lose them too.. I did buy Latisse, got approval from MO and have been using for last two weeks. Haven't noticed any hair growth. I have about a two inch bald area above each each ear. So will notice it growing there first I think. I am pretty sure you'll feel much better during Taxol. I was like you in AC...so, so nauseated thinking about caps. Also I did not cool feet and hands during any of my treatment. I have minimal numbing in my toes and my hands are fine. No swelling. My doctor said the numbing will go away. I do have pain in my second toe but I think that's because it rubs on my shoes, I am one of those weird ones where my second toe is longer than my big toe.. I have no darkening of my nails. My doctor told me to take a Super B and a ALA supplement. Haven't taken ALA because I read it causes hair loss, no thanks! I also take the Gabapenin to help with night sweats and any pain from neuropathy I may have.. I will try and switch to a more natural remedy after I am through all this.. My knee hurts every once and a while, but that's it.. I just bought a calcium and Vitamin D3 to take with my multi for bone density issues that will come with being pushed into chemopause and continuing with the hormonal suppression drugs. My hair hasn't shed as much when washing but does shed a lot when I run my hand through it and when combing. I bought a hat, suppose to arrive today. Read on here on a way earlier thread about a hat that fits a larger head (mine) with extra room so not to rub or get hot. Maybe I can get through spring baseball with it. Count down to April when I can color...
Willa - Speaking of coloring... what happened? Did your Dr. think it might be too hard on your hair? How long do you have to wait? Sorry, I know you were really looking forward to it. How are you doing other wise? I got through last chemo yesterday but then MO came to visit me in the "chair" yesterday and described next steps.. great.... could she not have given me a day... suppose to be a day of celebration and she brings me down with all the wonderful things I have to look forward too. I sat and cried..
Janetsam - Congrats you did so well! Sounds like you had a good process. Glad it worked for you! What's next in your treatment?
Hopeful and Pamela - thanks for the input on hair crud. I am hoping once my shedding is better I can wash twice a week instead of once or to fit the Penguin protocol.
Ok happy mid week ladies. Hope your week finishes out with happy hair stories...0 -
luvmyys and anyone else with residue, here's a tip. I just recently bought clarifying shampoo. I bought the Acure brand thanks to tunegirls advise. I washed my hair yesterday with it abs literally all that gunk is out. My hair feels clean. My scalp feels clean. I do t have this dirty looking dandruff that was lying on top of my head and don't have the dirt build up on my scalp. I highly recommend it. My son even said my hair and scalp look much better. And no it doesn't cause extra shed.
On my way to get my dry ice for my 5th treatment tomorrow. Dreading it. Hope everyone is doing well.
Hugs.
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Hopfull2 - I bought that Acure shampoo and conditioner too... isn't it fabulous! Great recommendation. I did switch up the shampoo for awhile. I bought an Argan Oil shampoo for hair growth but still use the Acure conditioner. I will switch back when my hair grows.. I do love those though..
I also use Tunegrrls recommendation for skin cream Clarins Night Cream it's amazing too.. ssshhhh we better not tell her, she might start charging us.. 😀
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luv, after 10 months of being in treatment i am done! surgery, 6 rounds of carbo taxol, 33 radiation treatments, numerous scans but am now NED! what is next are visits and blood work every 3 months and scans every 6 months x 2 years then i think visits every 6 months. it will take awhile to sink in. hair has been such a big part of this! first losing it after first 3 rounds, growing it back during radiation then saving it the last 3 rounds. now waiting on brows and lashes but they come back last time quick as a wink. i am back to using minoxidil to hopefully thicken up some naturally thin areas and speed up growth. i will submit a pic in a few days but the caps really did work for my 3 carbo taxol rounds and only had shedding after the first round.
wish i could "like" all the posts like on facebook. you guys are really an inspiration! cap on!
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Congrats Janetsam!
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I did 6 doses of TCHP and cold capped the entire time in addition to icing my hands and feet. Last dose was at the very end of December. I used arctic cold caps which I highly recommend and they were over $200 cheaper a month than penguin plus came with everything I could possibly need. I didn't hire a capper. Their manual and video was good enough to train everyone. I found this company theough the Rapunzel project ( look it up). Lost about 50% of my hair but it is still shedding and has thinned considerably so we will see. I will be submitting this to insurance so I will let you know how that goes. Good luck and feel free to ask any questions
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I taken advice from this forum and bought and now use the Acure Shampoo and Acure conditioner. I only comb my hair once a day and find I am getting rats nests in my hair. Penguin recommends no products on your hair and then they won't recommend a brand name anyway.
I did 4 AC and have done 1 Taxol so far (dose dense) and I'm finding more hair loss during Taxol, even though I've also heard people who have lost their hair have started to grow it back during Taxol.
Does anyone use a daily de-tangler? And if so what do you recommend. And should I rinse it out after I use it? My hair is about shoulder length + 2 months of growth. So a little longer than that. And doesn't Penguin caution you against cutting your hair. I know I can't ask my Penguin rep, as the answer will be no to anything I ask.
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Janetsam - that is awesome, so happy for you that you are done.You've had a rough year. Does the stuff you use for growth not cause any shedding? Is it natural? Do you only rub into the spots where you lost hair? How long did it take for your eyelashes/brows to grow back? Sorry so many questions. My last treatment was yesterday. I am so happy. Just trying to straighten myself out before radiation.. I never thought I'd be here. 4 AC and 4 dose dense Taxol too.. lost most my hair on Taxol.. too much..
Hangin - oh no, did you get the Argan Oil Acure shampoo and conditioner. My hair was so easy to comb out after use. I also have shoulder length hair and had no issues with rats nest. It's like butter to comb out. I don't know any detangler, maybe someone else does. Yes, I lost most my hair on dose dense Taxol. How long are you capping for after infusion? I did get an ok from Penguin to cut an inch off after second Taxol. Penguin is not help on product recommendations. Very frustrating..0 -
Willa216 thank you for your encouragement! It seems that during the last two days everyone I have run into in the "chemo" world has had high praise for cold capping, so all of the encouragement is needed and appreciated.
Pamela23--thanks for all the answers to my questions. Unknown to me, my husband, who is an Amazon junkie, found a silica compound there a couple of weeks ago and it arrived yesterday! So I have it, and the Nature's Made product you mentioned. Will run both by the MO tomorrow to get her approval. And I did look back and found the post from Hanging In There about finding a silica product at the Vitamin shoppe. We have those near our home in CO but don't think they are here in Atlanta. Will check into online.
Luvmyys--my situation is pretty good, with this treatment being my "insurance policy", but I have still had so many tearful moments. So my heart is with you. If you are looking at surgery, I had left MX with tissue expander and it was so much easier than I thought it would be. Your posts have been so helpful to me, thank you.
Elastogelgirl-your eyebrows are awesome! I wish I had them now.
Tomorrow is my "big" day. Pray for my husband and stepdaughter to successfully execute the cold caps
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luv, thank you!
minoxidil is generic for rogaine and yes it can cause shedding. i only mention it because it caused incredibly fast regrowth after my first three uncapped rounds in the spring. Clinical trials have proven it speeds hair growth and mayo clinic says it is ok to use during chemo. i am not worried about shedding now and my hair is really hanging in there and is quite thick. after the first three rounds it seemed that about the time my lashes and brows fell out they started growing back quickly within 3-4 weeks post last chemo. i probably only had to fill them in for a week or two! that might have been the minoxidil, it is known to grow hair on one's face which is why i stopped using it. so no, you don't only need to put it where you want hair growth. right now i am only putting a small amount on a naturally thin spot on my scalp and not as much as i initially used. it isn't a natural substance, it is a drug and it is over the counter at walmart. initially it was taken orally as a blood pressure medicine and it was found that people who took it orally had increased hair growth. i learned about it when i had total hair loss after first three rounds and read that it was safe to use while in cancer treatment(google search it). probably most here won't want to use it but if caps fail it is really worth a try to speed up growth.
i want to mention too i didn't follow recommendations about not washing hair but have been very gentle and now most days i am using conditioner as shampoo because my hair came back dry and so curly. it made no logical sense to me to not wash your hair. as they say, 'your mileage may differ though'.
tomorrow is day 21 and no still shedding. i know my treatment is different than most here, using caps for only three treatments but the caps have worked amazingly well for me having only had one major shed after round #1 of carbo taxol and virtually none for #2 and #3 and after having total hair loss in spring uncapped.
i am reading everyone's comments here and wish you all the best!
janet
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Hanging_in_there: If you don't already have one, I highly recommend "The Wet Brush" from Goody. I initially bought it for my toddler's curly hair, but it's been a godsend for easy detangling on my hair, wet or dry. I got one at Target and then another at Bed Bath & Beyond:
Elastogelgirl: you inspired me to start sharing adventures, so here we go. We just finished infusion #4 (the first of round 2) this afternoon in San Francisco. Some dear family friends are letting us stay in their insane apartment, since we go back for another infusion tomorrow. In the meantime, there really are worse places to stay when you're poisoning yourself.
I call this one "Cold Cap the City"
And our view of the Golden Gate Bridge (storm's a-coming!
We are learning that it's so important to take stock and appreciate the good things in the face of one big Awful Thing. This afternoon and evening will surely qualify
Cheers, everyone!
Now off to ride out the side effects...
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lizjo-great photos! Thanks..love the enthusiasm. Funny we have the same pink stretch band from Kmart! My chin jaw gets sore from those straps! That pink thing is a good add on.
Cheers thanks for pics great spot!
I'm pretty sad about my hair today I feel like four DD taxol is going to wipe it out. feels wierd and patchy now still can look like ahead of hair if you don't go looking around at the crown too much.. Feels odd tingly today.. I'm gonna keep chilling capping my head anyhow!
Your hair is a better color tolerance wise I think..
hugs e
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