Cold Caps Users Past and Present, to Save Hair
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Elastogelgirl, Summer2016, and Pamela23... check out thinhairthick.com. They make a crown extension (topper) that attaches to a headband so you're not clipping into thin hair that is easily damaged. I was about to buy one but decided to go with a full wig instead. I've lost almost half my hair and with 7 more weekly Taxols to go, I was afraid the topper eventually wouldn't be enough coverage. They're expensive, but they are human hair that you can cut, dye, etc...they look nice.
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elastogelgirl - you ROCK! I had to read the part about bad capping results due to "being in ski helmets, hats and sweaty head from working out all winter" a couple times to make sure I was seeing it right. Did you really ski or board aeound the timd you had chemo? I've only walked twice since chemo, but you are inspiring me to make exercise happen!
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willow22-thanks! Yes rode bikes then skied all thru chemo..we had the most amazing winter in Tahoe!
Not full days but a few were notable. I am retired so getting moving is my full time job. skiing was almost daily up out my back yard mtn.... like taking a walk up a big hill with heavy boots. But can always turn around and glide down to home...some days it was not far from the house. Skiing was a true gift last winter..... I got 9 short exhausting days in up at Heavenly ski resort. I missed plenty of powder days.
Radiation was kind of worse for me mentally. I had neoadjuvant chemo then surgery. got cording and neuropathy in my arm. Did PT for arm. Radiation fatigue really set in too. Neuropathy pain in my feet still from taxol.
Ice those hands and feet! I wish I had iced them more! Try hard tough it out!
I'm not moving as much post treatment! In a depressed funk. Went tandem paragliding to try to snap out of my funk. Was a hoot! I want lessons, but chemo brain is making me really stupid. It takes a while to feel normal again, at least for me.
On my big ski days I had pain killers and post chemo steroids on board. Now I don't take anything for pain which is adding to my current motivation probs. I relied on drugs to function, poop, and sleep. Now it's just tamoxifen! that's a shock on its own. I just started tamoxifen this week.
Getting back to my bike slowly until I snap out of it! I hear excersise reallyhelps
This is my victory photo signaling the end of treatment!
Hang in there everyone you got this! There are some rainbows, even good hair days! at the end!
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elastogelgirl- that's awesome you skied through treatment! My goal is to get through this and be on the slopes with my kids in January.0
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toughcookie-you got this! ⛷⛷⛷
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soniaL- did you try toppik? You might start growing some hair to fill in the bald very soon.
Thanks I'll look at the headband hair extensions! I'm about ready to cut into pixie.
Hugs e
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lymphedema prevention anyone?
I know off topic but....
sleeves! I complained heavily about the lymphedema sleeve choices! I don't have lymphedema this is just for prevention and pain. Finally my pt suggested REI bike sleeves. I love this option! I bought it really tight and had to carefully snip into the top band in a little zig zag pattern to loosen it. This because I wanted the sleeve tighter everywhere else.
This one was only Ten bucks on sale for pair. Make sure it's tight. I bought a co-op brand one and it's way too loose!
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Thanks for all the great advice already: 60-80 lbs dry ice, towel to cover & hair cut/no hair cut & dye. Right now I'm thinking I'll get it cut. My hair is thick & curly & would be beyond a tangled mess. I'll cut it somewhat short, chin level & cover the gray with a head band is my thinking now. All this assuming I am lucky enuf to keep my hair. Any natural dyes people have safely used for their hair or do I accept the gray, LOVE it, and move on?
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Elastogirl how many rounds of doce taxol did you have? I heard this one was easier than AC ! Now i am afraid i will loose more hair as you said with docetaxol. Me only 3.
Give me hope please! 😥
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elastogelgirl - love your fitness level and it is motivating me big time! I kept saying I've got to get serious about exercise, but it havent fiund anything fun to stick with aftwr I stooped taekwondo. Then I stress ate another 5# worth thru the diagnosis process, so with the start of chemo is my take charge, line in the sand of BC and AC me - before and after cancer - and I'm making the changes I want happen 😊
Btw, read your post "toadmit drugs", and in my fog thought it was toad mit drugs..... I just had my first neulasta shot today, with 3 more over the weekend and monday, but will only take claritin because I have a couple things to watch as possible sources of infection..... so I'm thinking, toad mit drugs that let u ski during chemo..... must find out more 😉
Capping related - if you dont need the extra gel bands for your head (4 come with penguin kits), they make great nail icers for taxanes. I bring 4 large ziplocks with frozen water and the 4 chilled bands - hands in cotton gardening glives go on 1 bag w/a gel band on nails, feet in socks go on another bag. Keep the others in the cooler to rotate as needed.
willow
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SJane--Toppik is for a texture I believe (correct me ladies if I'm wrong), for those with bald spot on top. I had hair on top and used WOW! powdered root concealer. LOVED it! I used it until I grew about 2" of grays around my part and switched to L'oreal root cover spray which feels stiff by the 3rd day, but was covering in a fraction of the time the powder did.
Hopfull--I was thinking about you the other day and wondering how you were doing. Happy to hear you still check in!
SJane--just sent you the pdf files Penguin sent to me. Go up on their recommended poundage for dry ice. I also sent their hair rules. Don;t stress about the silica, some used it, some didn't. I didn't, I think elastogel girl did. I used a Biotin based formula.
Elastogelgirl--very stylish sleeve. I do want to remind those who end up with lymphedema to get fitted for one so you get the right compression and length. If you want to prevent it, go for the badass one that elastogelgirl is sporting!
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sjane, i did cut my hair about 3 weeks before chemo. In hindsight it was more than a trim, but as a chin length bob that i can let air dry and not need anything other than a "wetbrush" brand comb from target and kenra leave in conditioner (amazon), I figured any stress on the follicles by cutting was evened out by less fussing with it post chemo. And, the conditioner is awesome for helping my wavy hair do the "beachy" thing.... better looking and scented than the paul mitchell sea salt spray I'd been using!
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vivianlu8-I did 4 Dose dense AC and 4 Dose Dense taxol. Taxol was not easy for me. Everyone is different.
My first Dose dense taxol was the worst! I reacted with severe swelling in my hands and feet 1 day afterward. Could not walk on my carpet it hurt so bad. Lasted a few days...I also did 5 days of prednisone for a severe rash sometime after that. Those two things might have caused more hair loss. I did lose way more hair on taxol than on AC. I had an easier time on AC than taxol too. My taxol infusions were not easy either..I had severe RLS during the longer Dose dense infusions....was hard to sit there with legs jumping around especially after getting serious with icing my hands and feet. I still have pain and neuropathy in my feet.
I do keep in touch with a cold capper gal that did my same AC T chemo regimen... she faired a whole lot better than I did! She followed all the rules. I just saw a current photo of her and her hair looks great! She was still very upset at the thin result.
Hang in there and go easy on the hair.
I read somewhere that with ACT chemo you have a 50 percent chance at saving 50 percent of your hair with cold caps. I saved less than 25% of mine but still very glad I capped.
Hugs
E
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Pamela did you use the Wow powder during chemo ? Where did you buy it? I found some in amazon but i am not sure which one is the best?
Did you experience more shedding in taxol as Elastogirl?
Did you take biotin during chemo?
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Vivian--yes, I did during chemo and after. I kept the top of my hair so I know it never interfered with the cold cap. I just made sure it was washed out before chemo day. I bought it at Ulta.
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Did any of you use castor oil in the bald spots like on the sides near the ears? Not in the scalp?
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Hi ladies I see that a few of you are thinking about extensions I wear them. I'm 10 months PFC and I waited for 6 months to let my hair rest. I lost over 80% of my hair wore a hat the entire time until I got them. My hair dresser helped me get them from a local store that sold wigs etc. I'm trying to take pics to show you ladies. Since I lost so much hair they really helped me feel so much better and normal. My daughter cried when I came home bc my appearance changed so much and always wearing a hat. I look like my old self No one knows I wear them not even my husband ( maybe later on) I paid under $100 and they are real hair. My hair is now a short bob and I'm" almost "ready to let go of them. They do take time to get use to and practice. I get frustrated bc it's still a new normal on this journey. But I'm so happy they exist!!
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hi meow, are your extensions clip ins? Or did u have them taped or glued to your natural hair.
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Hopfull, hi sorry to mention that they are clip on. Tape or glue I felt would be too harsh on the hair and with clips you can give your hair a break at bedtime. I don't wear them every single day I wear a hat to give my hair, scalp and me a break. Mine came w 7 pieces and I only use 4 of them. My hair dresser showed me how to use and style them. I was a nervous wreck at first I wasn't sure if I can pull it off and look natural. I get nervous on windy days though but I just put hair spray and move w the wind. I also watched you tube videos on women that have short hair and used extensions. If you decide to get some be sure that the entire clip is same color as the hair. I've seen some that we're white or pink by the clips and it shows through the hair. Hope this helps and I'm trying to post pics.
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hi meow, last question, where did u purchase your extensions and how many grams did your bundle come with ? Thanks in advance
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Wow. You look great, glad cold-capping was a success.
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Meow--I've had a lot of "new Normal" experiences so adding hair on my head. albeit not mine, wouldn't bother me at all. I was just sweeping up the kitchen and saw a pic of my family from about 3 years ago. My hair was amazingly long and thick. I just can;t believe I looked like that. It was like looking through a stranger's eyes. I can;t even relate to the woman who looked like that. I guess we are lucky that the changes are gradual. I look thinner every month from Jan-July. And my new growth is about 2-3' so stands up when I run my fingers through it. What's left is see through when the light is behind me. I would LOVE to clip something in even if it's only for social events. I've been wearing a hat the past week and found I could do a low ponytail that hides the sides a bit. Leaving it down is no longer an option that looks pretty. Thank you for letting us know about these clip ins. I was going to call a local wig place and ask about it. There's a store here that does by appointment only which I went to in Nov but never purchased She showed me all kinds of wig and toppers. I never thought of asking about extension pieces. On my to do list tomorrow!
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Hopfull , hi I can't find my package they came in sorry when I do I will let you know but I know you need the info now. Mine came with 7 pieces I got them at a local wig place. The owner said 7 was plenty. I only use 4. I blend in what's left over from chemo my straggly strans that barley hang on. If I use all of them it doesn't look as natural and it takes more time that I'm not wanting to spend (3 kids). I did use them all for a rock concert 80 style volume I felt so much at peace. The option is there if I want. Play with them a bit. Talk to your hairdresser they can show you how to put them on. I wear clips on my sides to pull back short hair to mix w extensions.
Pamela,your welcome! I'm just passing on what us ladies do here on this site is to share. I'm sure I'm not the only one but these ladies( past and present) here are so generous w info. I saw pics of myself other day too and my hair was passed my bra and thick and shiny. It took my 3 years of babying. I had an odd feeling the very first time I met w my onco. While waiting for dr to see if I need chemo a nurse came in and complimented my hair and I felt a chill to that. Then dr came in and told me I needed chemo strong chemo and I'll lose my hair. I see the pics and I'm crushed I was known in my circle for my hair and here I am putting in pieces of some one else's hair. I'm just grateful for the option bc a wig wasn't for me. For your situation you can clip some in on your sides blend in w the rest. In still working in pics. My phone won't take pics. Darn it. Let me knw if you ladies need more info!:)
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thank you meow, I'm going tomm to a place I found not far from me that sells them and they have good reviews. I can't wait. And I don't want them long cuz then it will look too fake ,my hair is neck length so I think 10 inch clips will do the job. I just want them too for date nights with the hubby or social events. I have 2 weddings to go to next month so extensions would be nice. Thanks so much. I think by December I will feel comfortable with my hair.
Pamela, I know exactly what u mean, I see pics of myself either at home or on my phone and think I wish I was that girl again, sadly I will never be that girl again because BC changes us. So I too have to get use too my new normal.
Hugs
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Thank you all for your replies last week. I'm inching closer to the dreaded first chemo though it will be pushed back by at least one more week due to some disparity between my first and second opinions. I called southwest technologies and they don't make the cap below anymore. The new style looks similar to the one KCMC has pictured in her post. KCMC- I know you were just getting started, but how is it working out for you?
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Tough cookie - No shedding yet because I just started, First on July 28 Second on August 16th.. My 2nd chemo is next week on Wednesday. I washed my hair twice since chemo. Three days after which was a Saturday and then the following Sunday. I use a pair of sunglasses to push my hair back since it doesn't pull on my hair. I'll keep you all updated. I sleep with a silk pillow and comb my hair once a day with a fragile wide tooth comb I picked up at CVS. Here are pictures of my normal hair and me cold capping. The yellow is the ace bandages.
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Also Tough Cookie, No other hair has fallen out in other places yet, but I do notice all those pesky chin hairs and lip hairs aren't growing any more either is my eyebrows lol! So no plucking for now.
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Elastogelgirl...I was using toppix for a while until the bald spot got larger and then it just looked and felt kinda yucky to me. And now the long part of my hair is so thin, it just looks awful. I'm getting used to the wig, and got some hat hair today that I'm going to play with. I cold-capped again in my treatment today, still trying to save what hair I do have. I sure hope to see some re-growth soon - will make me so happy! Had treatment #10 today so just 6 more to go!!!
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And Elastogelgirl, would love to see your pixie cut if you do it. Its such a drastic change for those used to long hair but I'm thinking that's what I'll do as soon as I have a little regrowth on top. I may wear my bobbed wig after chemo until my own hair gets at least that long.
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SoniaL-I'm still struggling with what to do. I have a ton of thick bushy hair at the back of my neck. Makes my old hair fall weirdly over the top. one thing that is helping with the mullet on the top is my bike helmet!. I've been biking to the beach for a swim. Wearing the helmet with my hair wet is giving my hair an old fashioned Gatsby look. It is helping to smash down the short stuff and blends it with the long. 'Helmet head' is a good thing! Lol
I mostly wear a head band to smash down all the unruly areas. Luckily it hits most of them
My hubby is not into the bob. He was my capper so he takes it personally when I complain or talk about cutting. He thinks I look fine. He is an amazing man.
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