Cold Caps Users Past and Present, to Save Hair
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Catgirl2 good luck on #2 today. You'll do great!
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janetsam- I think you were checking ingredients in Olay regenerist micro sculpting spf? I googled and found the list below..it's really kinda hard to find ingredients on Olay products for some reason! seems intentional.
Avobenzone is not great. Octinoxate is not great. These are sunscreens..
Olay regenerist micro sculpting spf
Active: AVOBENZONE 3%, OCTINOXATE 7.5%. Inactive: water, glycerin, niacinamide*, tapioca starch, dimethicone, ethylhexyl methoxycrylene, panthenol**, tocopheryl acetate***, palmitoyl pentapeptide-4^, sodium PEG-7 olive oil carboxylate, peucedanum graveolens (dill) extract, stearyl alcohol, polyacrylamide, behenyl alcohol, cetyl alcohol, C13-14 isoparaffin, caprylyl glycol, 1,2-hexanediol, phenoxyethanol, PEG-100 stearate, titanium dioxide, fragrance, dimethiconol, laureth-7, sodium benzoate, cetearyl glucoside, cetearyl alcohol, polymethylsilsesquioxane, disodium EDTA, stearic acid, palmitic acid. *VITAMIN B3, **PRO-VITAMIN B5, ***VITAMIN E, ^AMINO-PEPTIDE.
From google search--Personal care ingredients that include: "ethyl," "butyl," "methyl," and "propyl" are from the paraben family even if the word "paraben" isn't in the name.
My Olay serum.. had... three kinds of parabens I think. yours doesn't appear to have any. It looks like Olay might have removed the obvious paraben ingredients from their products..I can't find them in my same serum now, but it's really hard to find Olay ingredients anywhere. Definitely not on the Amazon product purchase pages...it's a puzzle. I'm just a googler...please correct me if I'm wrong.
Hugs e
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elasto, it wasn't me looking about olay ingredients. on my face and neck i only use ole henriksen which has no parabans. i love this product line! i use the vitamin c serum, the 'truth revealed' super cream, eye cream and a bunch of other occasional treatments. i have gotten so many complements on my skin since i started using it and this is all through chemo and rads for the past 9 months so i highly recommend it. pricey but usually their website has some kind of special. when i got diagnosed i stopped using body lotion and switched to a combo of organic sheah butter and organic coconut oil which i slather on after every bath. i really love burt's bees bb cream and andalou beauty balm to even out skin tone. they have sunscreen but my daughter who is my 'beauty consultant' is adamant about never going out without sunscreen and her skin is flawless at 34.its a bit late for me as i have skin damage but why get more now.
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janetsam-thanks for the tips on lotion! Sorry, I couldn't find the post on who was looking into it...
I need to find something quick! I'm so itchy from chemo! I have red itchy spots all over from AC chemo! Anyone else have this. Mostly on my upper thighs and forearms. Some on face. Itchy awefulness. I have my first Taxol tomorrow...worried my apparent mild rashiness will interfere
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elasto not sure about the rash but did you start taking claritan for the chemo bone pain? i took it for carbo taxol and it helped immensely.that might help with the itching.
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Elastogirl, I had the itching after my 1st infusion, it was on my neck and caused a mild rash like appearance I was told to continue my Claritin longer, that it was a reaction to the steroids in the premeds. since it was my 1st infusion, I had only taken Claritin for about 4 days, after that I did it for almost 10. Never had the issue again. That said, I'm 3 weeks PFC and my skin feel itchy the past few days. I've been moisturizing and doesn;t look rashy or dry, but my chest, arms and back itch a couple times a day.
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janet and pamela-thanks I will give Claritin a shot. I have been using it for neulasta pain..I dropped off after pain subsided. Rash was better then now it's much worse so you guys may have it figured out! Thanks!
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I am not sure what the half life of claritin is but to be safe i would start taking it a few days before chemo to be sure the blood level was adequate. it sure made a difference! i didn't take it for my first infusion and it felt worse than the flu, so much better with claritin. I also didn't have too bad a time with neulasta, mostly headache. also the winter is so dry, even here in NC which worsens any problems with skin. i use lots of the mix of shea and coconut butter all over after every bath.
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Hello!
Meow - thank you for your comments. I don't want to wear a wig either. If I can keep most of what I have I think I can handle it until growth, then will cut to match. I am actually kind of excited about eventually having a shorter haircut for awhile.. Thanks again!
Elasto - How are you feeling other than the rash? Good luck tomorrow. You'll do great. I didn't have itching or rash. You also have the colder weather so probably doesn't help. We've had so much rain lately it's been good for my skin. Couple weeks back we had warmer windy weather and I could tell the difference. I also wanted to mention I had bloody noses on Taxol. I used SimplySaline a lot to keep sinuses moist. I was really thirsty on Taxol too, on AC you had to force me to drink..Be thinking about you tomorrow!
Janetsam - Do you use the Adalou on your body or just face?
Catgirl - hope your doing well today.
Thank youall for supporting me through my meltdown yesterday. I am sure you can all relate I get in a funk about this stupid cancer. My last child went into Kindergarten this fall and selfishly I was looking forward to a little "me" time while still excited about being in the classroom with him a couple days a week. Boy, did I get "me" time, but I missed being in the classroom. So this morning I woke up saying "I'm alive, my family is healthy and I will always have 1st grade"..
8 days PFC!
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luv, the Andalou is "all in one beauty balm sheer tint" for face only and i use it over my moisturizer for extra moisturizing and under the Burt's Bees BB cream which has more coverage without looking unnatural. i love both of them. i used to love Korres watermelon tinted moisturizer but they stopped selling it at sephora but combining the two above comes closest to it.
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Hi everyone,
My mom was diagnosed with breast cancer (stage 1, ER-, HER2+) back in October 2016, and I was on this thread religiously trying to learn everything I could about her cancer and also Cold Cap therapy. Everyone's different insight was very helpful so I wanted to come back and share my mother's experience with cold caps in case it could help someone else. She just completed her last round of THCP last week, and she has kept about 85% of her hair
Not sure if it matters, but she's 65 and has thin asian hair. The caps we went with were the Penguin Cold Caps (PCC). It's definitely one of the pricier caps, but looking back - I am so glad we went with this. Why? Because the way the Penguin Cold Caps are created allows you to maneuver and securely strap the cap to your head shape. It also comes with extra gel bands (that also get frozen) for you to wrap around the hairline area. One of the most important things about cold capping is making sure you leave no space or gaps between your head and the cap. If there is a gap, that area doesn't get as cool, so the chemo drugs are able to "flow" to that area of your head.... and you lose hair. So with that said, the PCC caps allowed me to pull and tuck the cap as close to my mom's head as possible to avoid this. Other little things we did were switching to sulfate free shampoos (we used Juice Organics), satin pillows to prevent tugging of the hair, no haircuts/hairsprays/coloring and washing the hair only every 4-7 days. It was a lot of work... but she kept her hair. She had even/minimal shedding throughout the 6 rounds, and did not experience a big shed day. She did lose hair everywhere else on her body though!
Prior to deciding on PCC, I also looked at the Elasto-gels on Amazon for her (I was trying to find DIY version for cold caps to save money)... but honestly, I had no idea what to do, what schedule to follow, how cold the temperature, etc. Dignicap was our initial preference since you can avoid the hassle of dry ice and having someone change the cap every 25 minutes. But only a select number of clinics offer it in California. So after some research and seeing that UCSF did a formal case study on PCC with patient success, we chose PCC.
Honestly, everyone is different. If you're on the fence about cold cap therapy, you won't know until you try it on yourself. I admit, it was a lot of time, money, and work to do cold cap therapy. But for my mom, she was able to retain her privacy during treatment and also maintain some normalcy around family and friends. And that made it worth it for us. If you are just starting are half way through cold cap, don't give up
I wish you all the best and good health during your journey.P.S. HairToStay is another great resource if you're interested in a number cold cap therapy as they offer financial assistance to those who qualify.
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you guys that had success with Claritin and bone pain with Neulasta are so lucky. My bone pain was worse than anything I've ever felt. I about ended up in the ER but I was afraid I'd look like a drug seeker. Now looking back, what a dumb thing to be worried about. I still hate that neulasta commercial. It makes me cringe
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runner i hate that someone who is going through cancer treatment has to feel like a drug seeker! maybe i was lucky but my docs wrote 3-4 prescriptions for percocet over the past 10 months and it has made some parts of this so much easier. isn't itenough to worry about the diagnosis, the toxic meds they put in our veins, the potential loss of our hair and then to have pain on top of all that! geez!!!
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Good morning Cold Cap Queens!
I start chemo in a few weeks, 4 AC + 12 weekly Taxol. Going to use PCC for the fit and gel bands and since I only have one helper we need to get it right the first time. Really want to have some success if possible and all of your pictures give me hope. My MO is not impressed with cold capping but will allow me to do it. I guess I am not surprised based on others comments on this board.
Anyone else have success with this particular chemo protocol? MO thinks hair will completely fall off during Taxol. Some people on this thread said it started to grow back after AC/during Taxol.
My other question is has anyone heard of reversing the order on this protocol for better success? It seems counterintuitive to my statement above! So confusing, but appreciate any help with this!
Thanks for any help, suggestions, tips!!
Anne
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Lovesgreen-hello I am aslo on AC and taxol. Done with AC I'm just staring my first (Dose Dense) Taxol today.
My onc suggested going with 4 rounds of dose-dense taxol bi-weekly....instead of 12 weekly. I will be done in 8 weeks verses 12. Cold capping is a challenge so 8 fewer infusions was very attractive to me. The projected outcome is the same. side effects are supposed to be rougher. I'm not sure wich is better for the hair, probably weekly but I can't imagine facing 12 more rounds instead of four.
I've lost quite a bit of hair and I'm only half done. I'm not happy with the way my hair looks now, but bald is a whole different story. Keep in mind you probably won't be super happy with the way your hair looks as you thin. Cold cap Protocol is tough with not much hair washing, no styling, no wigs hats....I'm breaking rules wearing bandannas and hats...ski helmets. It's pretty tough to go unwashed, unstylled, uncolored and without a hat or scarf. It's a hair obsession for me daily, I am shedding loads every minute of the day.
There are a few ACT chemo gals on here with photos..I'm following Luvmyys she just finished AC T dose dense protocol. You might want to track our threads..we have posted a lot recently with some hair photos.
As you know ACT is the worst for hair. I think if you are brunette it is supposed to be better. I'm blonde. I had loads of hair. Now I'm super thin with patches of bald that don't show at all when I comb over. I look normal to most people, I just don't look normal to me, I had great hair! now I have a limp, thin, lack luster gray looking mop. I purchased some toppik for the bald patches and widenenig part line, I don't need it yet but I wanted to try it. I'm feeling like I will have visible bald spots by the end..toppik and other products can hide very well...
I think capping is worth it either way! I hear regrowth is faster and capping probably protects against permanent thinning or worse.
I also should mention that the capping is hard on me emotionally. I'm having flash backs of chemo day all the time. I cried last time we bought ice. I would be obsessing about something no matter what. I'm up at 2 am here sleepless, it's chemo day!
Hugs E
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elasto i hope it goes well. glad you have less rounds to deal with. my carbo taxol made me feel fatigue and aches, maybe the association you had with capping with feeling you had with AC will not be as bad.
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Hi Ladies,
I had round 2 of my 4 rounds of T/C yesterday. My hair is still coming out pretty bad. I'm worried that it won't stop! Should it still be shedding this bad? I've lost a small baggie full and my hair looks so unhealthy. I'm using the Acure shampoo and conditioner, but not sure what else I can do!
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Catgirl2, you may well be at the peak of shedding. My big shed peaked day 19 of the first round of TC, and you are just a couple of days past that right now. With luck, your shedding will taper down from here. You won't know until you know, though. Seriously, half of my shedding happened around the time you are at now. I bought three hats in case each round would cause that amount of loss, but never wore them, not even once. Hold tight! TC is famously easier on cold-cappers then AC is.
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I'm w/ Tunegirl and kshorten. Big shed around round 2, then continuos light sheds a couple weeks after 2 & 3. I'm 3 weeks out on round 4 and felt a bigger amount coming out on todays and last Sunday's washes.
Remember IL311 freaking out because she used a color wash around 3 weeks out and thought she may have done something bad to her hair? I'm here to say mine did the same thing and I have babied it so watch for a little more in your comb about 3 weeks post 4th infusion. Hopfull--did you experience that? I think you've already done #5
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hi all,
will start TCHP maybe next week.my onco is very supportive with cold caps. i cannot afford penguin cold caps. there is a lady from penguin who comes at the infusion center and does it for patients but costs 5 thousand dollars! (gasp). i am trying to look for elasto gel caps but they are nowhere to be found now.not on amazon, not on ebay. you know where else to buy these?ty.
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kae nott sure this will help but yesterday there was one on ebay and someone on amazon had some for sale but you have to look at comments after searching for elasto gel caps. you might try calling southwestern technologies and speaking with someone 800-247-9951
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I found this site for elastogels...ignore thier instructions. Look at comments. I'm not sure this is legit...
https://livebetterwith.com/products/elasto-gel-hyp...
I finished round one of Dose Dense taxol. Most uncomfortable round of chemo yet. They pumped me full of double steroids which goes against my fasting diet, and my wishes. they could care less about my cold capping (seem annoyed) and my fast mimicking diet both of which are proven have merit and human ongoing trials. Also the large doses of benedryl in my pre- meds cuased Intense RLS restless legs like crazy.. I was jumping all around. Made it hard to relax and harder to do the cold hands and feet. Nausea was an issue too but they blamed that on my empty stomach, can argue that. of course now any SEs I get they can blame on my diet. Never mind that my side effects are so improved that I'm out skiing day 1 an on post AC chemo! Arrgh.
I capped for a total of 10 hours 3 one the way home in the car...we had a challenging drive due to 'storm of the century of the week' multiple pass closures mud-rock slides. We had to drive south over our most southern pass to circumnavigate our most northern one. Four routes to my cancer center were closed. We cold capped in the car for three hour s on the return. I am Wiped out!
This morning I'm feeling okay except for for arm pain which I got during my AC chemo as well? I did not sleep due to massive steroids. I have some weird forearm pain that I seem to get 1 day post chemo on AC now taxol is the same.
Hopefully I can get them to reduce steroids and benedryl next time .
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hi all,
Did anyone get a swollen face after neulasta? I go for shot this afternoon. My face eyes looked like a frog the morning after shot last time. Was after AC chemo. This is my first round those dense taxol.
I just took Claritin on an empty stomach ! bad idea, I'm flushed and a tad Nauseas now. My fast ends tonight but I'm eating a couple saltines now
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Thanks, Ladies! I'm just a little nervous about all of the shedding! I hope this big one is almost over! I'll be happy if I do as well as all of you.
Elastogelgrrl: I can't believe all of the challenges you have to face to get to treatment and back! That is crazy! I hope you're getting some rest and relaxation today.
I wasn't sure I'd make it day after T/C, but I made it to my daughter's last high school opening night in the musical " Sister Act". I didn't look too great, but I made it. Feeling pretty tired today, so I'm not sure about tonight and tomorrow night performances. How did round two hit those of you that had T/C? I'm not sure how long I'll feel this fatigue.
Have a good Friday, everyone!
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janetsam,i called the makers of cold caps. apparenty FDA changed their regulations and they have to make changes in order to meet the new "regulations".that is why they dont sell it for now.maybe in the next 90 days they begin selling again. grr.went into amazon and i saw the comment wherein somebody sells 2 caps. i emailed that person. does it come in sizes do you know?i wonder if 2 caps would be enough...
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cat girl- thanks.
I just know your going you have good luck with your cold caps! Be vigilant about contact and wear them As long as you can stand. Follow the rules.Don't get too upset with all the shedding. You will be surprised how much you can shed and still look normal to other people. I'm always adjusting my attitude about my hair now. And I'm very convinced you will have a better outcome than I will, with the dark hair and without the AC chemo! I'm a rule breaker with my scarves and stuff
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kae md 99- I have five elastogel cold caps. I could maybe part with one I will ask my hubby when he wakes up.
Hugs e
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thanks elastogelgirl! i start next week.i have contacted someone who possibly have 3... will pay you..but you are using them still right?anybody in here willing to sell their used ones?....
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Kae-yes I still have three infusions. I don't want you to start with only two caps! Not enough!
We have had one too many caps so far. Maybe just maybe we could part with one. We did need it when one of the caps had material slide around and freeze in a bad clump. He immediately inserted the new one into the ice...the clumpy one has recovered. The caps look perfect when new. They will start to get wrinkly right away. Happen to me the first round. Try your hardest to freeze these in shape. See below how he makes the ice into molds and puts the caps in edge down. Edge down helps get caps to the right temp at the edges. Many cold cappers loose their edge hair.
A WAY TO SAVE MONEY ON ICE...my hubby made friends with our local grocery store at Raley's. They are now selling the ice to us in the morning and taking it back in the evening. They are all about saving my hair and helping with the fight. We bought 130 bucks 5 lbs worth yesterday and got 98 bucks back last night after 10 pm. The more ice you have the less it melts it's a math thing. more mass the better... if any of you are into trying to work a deal with your store. Last time we purchased less.. And got disporpotionally less money back. Plus low ice can lead to cap issues. it pays to buy a big load if you get this type of storeagreement going. We have two coolers he keeps a lot of blocks whole. He has a way with people. We only return whole unmolested blocks but they are happy to take it all. So nice!
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