Cold Caps Users Past and Present, to Save Hair
Comments
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Hopfull2: Where on your hair did you put the gauze? Was it just over your part or did you wrap it somehow? I'm just so confused on how to do all of this.
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I tucked lamswool in around ears and at forehead after caps were on. Got on amazo
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catgirl, I was told not to put anything between my hair and the cold cap (Penguin). I had no problem with hair sticking to the cap because of the cold. Some people do have issues with getting the hair stuck in the velcro, but my helpers were just careful to keep my hair out of the velcro when putting on each cap. Some have recommended closing the velcro loosely when putting on a new cap, making it more like a helmet, and then tightening the velcro once it's on your head. If you lose a lot of hair in one spot, then you could use a little gauze to help prevent frostbite in that spot since you don't have the insulation from your hair.
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Cat girl- I have a Penguin rep with me at every treatment. He puts pantyliner on forehead and each ear. He last a strip of gauze over my part and then puts a hair net on my head. I guess to keep everything in place. I haven't had any frostbite or sensitivity on my scalp with all 6 of my treatments. I've had 3 different reps and they do it all the same.
Hopfull2 - it's hard to think I can't do my normal hair styling for another 3 months. Ugh! I have tried to focus on my body, eating right, exercising, healing. I also researched with my dermatologist a good skincare line to get serious about taking good care of my skin.. Trying to realize that I can only do something about those things right at this minute. When the time is right all of the rest will come together. I know, my kids are home today and I planned on taking them to the park to play but just can't muster the energy to get me and them ready. Such guilt.... spring Little League starts soon and I'll be through chemo. Can't wait to go to practices and games.. now just trying to figure out what to do with my hair if it thins out too much. I look ridiculous in a baseball hat.
Be well!!!
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Ladies, Thanks so much for the info! I just hope this all works and I keep most of my hair! At least this is giving me something to focus on besides the worry of what I will feel like after my chemo.
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hi cat girl. It's a piece of gauze with an opening at both ends. Looks like a net. I pulled it over my head like a beanie. It ended at my ears as it covered them a bit
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Hopefull2: I will have to look for that guaze. Thank you!
Today is prep day for my first treatment tomorrow. I hope I have everything I need! Wish me luck!
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Good luck Catgirl! Just practice putting on the cap a couple times tonight, and write down your times so you can keep track of your schedule. Once you get through tomorrow, you'll be a pro! I use Moleskin across my forehead. Never had a problem w/ my ears since my hair falls over them. Also drinks LOTS of water the next couple days. Stay ahead of the constipation from the anti nausea meds by starting Miralax tomorrow. Also get your Claritin ready for the Neulasta pain. Start the day of the shot and take for about 7-10 days. My biggest tip is tp keep a journal of your side effects. It helps for the 2nd round. You'll know what to expect and how to manage your SE's better since you won;t really know how they'll be on round 1. You think you'll remember, but trust me, you won't!
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Thanks, Pamela23 Those are some great tips!
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I'll be thinking of you tomorrow, Catgirl. I go in tomorrow too for round #4. If it's anything like Hopfull felt, I'm dreading it. I felt #3 was hard to recover from, but it's my last one, God willing, FOREVER! I can do it 1 more time.
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Luvmyys: Your hair looks great! Happy for you! I think you're going to end up in a really good spot.
IL311 - I still have a rash 10 weeks PFC that comes and goes on my hands. It looks like a sunburn. MO says it's chemo clearing from the body. Who knows. Hope your Clairol rinse is still doing its magic
Meow and other hot flashers - maybe try acupuncture. I'm doing that and it seems to help.
Is anybody using any special skin care products that they'd recommend? One that makes you look 10 years younger in under 10 hours (ha). I have a derm appt but it's 6 weeks out. I'm trying to deal with some difficult reconstruction issues right now and could use a little boost in the self esteem dept while waiting for the derm. Thank you, ladies, for any ideas!
Pamela: So much luck to you for your last treatment. Hugs.
Catgirl, Elastogel, Hopefull and everyone else - hang in there and happy hair to you all.
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Pamela23: So happy for you that it's your last one! I hope your SE from this one aren't too bad. I've been so worried about the caps that I haven't even begun to worry about the chemo. Keep us posted on how you feel and how your hair is holding up! Good vibes for tomorrow!
willa216: I'm wondering about the skin care also.
Here's to a good week for everyone!
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Willa, great idea! I'm def going to look into that I'm a huge believer in its use. About the skincare if your looking for skin tone tightening or brightening I like Paula Choice Rentiol / hyluronic acidproducts. It's not prescription strength but my skin looks better. I have used it for awhile so you may need to let your skin adjust and use it 2-3d x a weeks at first. The Yes and Burt's Bees hydration at Target are good w no parabens. Heck even Oil of Olay have good options . And also Hope In a Jar by Philosophy there products are renown which Oprah loved.
So sorry about your recon may I ask what's going on? I haven't even started.
Pamela CONGRATS!!!
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okay I'm 6 days past AC 3..1 more AC then 4 dose dense taxol.
I'm so happy I still have hair! It's messy grey lackluster and thin. But it's a head of hair. I used to have vibrant thick hair...but this is better than bald! And I'm a believer that the cold caps will be insurance towards my hair returning to its normal heathy thick state.
I'm scared of losing more...of course. I washed last night. Shedding not bad. I don't think I got the shampoo completely out though I used so very little. Washing little more than once a week. Had to after excersize! Was so sweaty!
Here's some mixed up pics, Below photo..my part line wherever I put it has never been this wide but can't complain...hope hope hope it stays.. I went skiing ..once cross country behind my back yard top photo..once yesterday at Heavenly Tahoe below. With the real skiing... below (wind) I used a large silk scarf to protect my hair with a loose hat over it to hold it on. I almost barfed on the chairlift! But it was so good to get out there! I lasted for 45 mins lol! I used a scarf under the hat in both photos..just a really large one for the more dramatic weather elements. Fo super dramatic weather I've been using a scarf with a shower cap over the whole thing then a hat. The shower cap, if tolerable, really protects the whole mess!
See photo below! this my pony I cut off 'very gently' after AC 1...I decided the weight of this pony tail was too hard to manage. It was so heavy when I washed.. I feel safer, hair lighter weight without it. Plus I am now used to the short hair. I've had long hair since the age of five in 1969! This was aweful but I saved enough on my head to still put in a pony. I know many cap sites say don't cut hair! I'm glad I did...can imagine losing the longer strands when shedding and trying to deal with constant weight and snagging. My advice is cut to chin length before first chemo. And if you want color do it the moment your diagnosed....way way before first chemo I was due for color and missed out! now the mousy grey is me for the durationfor.
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Elastogelgirl: You look so great! It's wonderful that you have been able to get out! It's beautiful there. I used to live in Colorado and Washington, so I miss the beauty of the mountains. Living in St. Louis doesn't give me much beauty. I hope I do as well as you with my health and the cold caps on my TC treatments.
Today will be my first chemo, so with me luck! Keep up your great attitude and you'll do great!
Have a good day everyone!
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Catgirl2- I just know your going to do great! Good luck today.. From what I read I think you will fair better without red devil adriomyacin! That's what I read.
I'll be sending some good will your way today! It will go by fast with the capping!
Hugs elastogelgirl
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Hello!
Elastogelgirl - You look awesome and an inspiration going skiing during all this chaos but good to try and keep your normal schedule. Hope you are feeling well! One more Red Devil to go... I have no nausea with Taxol, but had it really bad with AC. My SE are joint pain and tingling toes. I do an Motrin and heating pad when joint pain gets bad maybe only once or twice during two weeks.
Catgirl - Good luck today! You'll do great, one day at a time. Keep us posted on how you did.
I had #3 Taxol treatment yesterday, slept most of the day at treatment center due to the Benadryl. Stayed there for whole cold capping session. One more to go. Feeling good today due to steroids. My face really flushed. Tomorrow will be my slow day after Neulasta shot tonight.
So as far as skincare for me I have ordered a line called Skinecentials (sp?). I also got approval from my MO to do a Clear and Bright facial after chemo is over. In all honesty I also do a targeted Botox for my 11 between my brows only. I am an accountant and years of scouring numbers being in the sun and not wearing sunglasses has left very deep indents. For me, once it's done, it takes 10 years off my face.. not for everyone, but it helps me.
So what's everyone's opinion about "ringing the bell" after last chemo? I don't know if my treatment center has a bell, never heard anyone ring it yet. I know some do signs with last chemo and the date. Maybe overly enthusiastic friends help with the festivities? But since we haven't told anyone don't know who I would show (haha).
SO hungry today!
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Hi not sure if anyone else is using Dignicap. Perhaps you are all using Penguin. My oncology center in Park Ridge IL offered Dignicap which was the only way I could try to save my hair due to a lack of support in changing the Penguin cap. -----my update for anyone thinking of using Dignicap. So, far I have had 2 TC treatments. I have major thinning on the crown of my scalp. I was warned by the nurse who performs the Dignicap duties that most of the women who have used this system lose the hair at the crown of their heads as the cap doesn't seem to keep contact there well. I told her that if I keep at least half of my hair that would be success to me. I know everyone is different in their expectations. For me, I just wanted to keep hair on my head and not be bald since we do not know if we will have perm hair loss.
My next treatment is this Friday and I am not going to lie.....I am worried if I will lose more hair as I have had loads of shedding! Even this week I have had handfuls coming out. Thankfully, I had very thick hair prior to chemo and can only hope that I will keep enough to cover my head.
Wishing everyone wellness!
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Elastigelgirl -
I got frostbite on my ear the first time out. What works well for me, (I've now done 4 chemos with cold caps) is moleskin. We cut a pattern of my ears and then cut the moleskin bigger than the pattern so the moleskin goes around to the inside of my ear. It took 2-3 weeks for the brown from the frostbite to disappear from my ear. Now we are VERY careful about making sure my ears (and also my forehead) are covered with moleskin. I bought the pads they recommended as well other stuff but like the moleskin the best.https://www.walgreens.com/store/c/dr.-scholl's-moleskin-plus-roll-padding/ID=prod6144722-product
this is what I got, mail order. I ordered a bunch, just in case. I don't think that link is going to work the way I see it, so look up "Walgreens role moleskin" and I think you will get the page.
I am on day 52 of chemo (have another next monday) and I still have a lot of hair, but a lot has fallen out. There is hair everywhere in my house and car. I still have my (very ample) eyebrows and I still have eyelashes. I don't know if I have lost any, I wear glasses so I'm just not aware.
I still look normal. People would not know I have lost a lot of hair, but I'm lucky that I had a lot to start. My MO said I will have a lot more gray hair when this is all over. I have mostly brown hair now, but lots of brown and gray hair is falling out.
cheers to all as I read what have missed during my chemo week, when I pretty much sleep thru.
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Hi Gals!
I'm home from chemo. These Penguin caps are a pain, but my honey is doing a great job putting them on. I'm still wearing them and have two more to go tonight until I'm finished. Can't wait to thaw out. The good thing about the caps is it takes the mind off of the chemo process. So far I feel fine, but then I guess it's the coming days that will get me.
Everyone at my Cancer Center was really helpful and interested in the caps. The nurses think that more women should be made aware of them, but the doctors are pretty old school here. It may just have to be my mission to improve awareness in this state!
Well, it's about time for a cap change!
Hugs!
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Just took off my very last cold cap, hopefully forever, an hour ago..(cue the song "Freedom"). I'm DONE!! Rang the bell. Now to take on the side effects for the next couple weeks and onto radiation in a month.
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Congrats Pamela23, what a thing to celebrate. Hugs to you, I can't wait to say the same thing.
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Help!
I'm going in for the most hair-toxic round tomorrow, and I'm deathly afraid of screwing it up. For high dose or long Taxol infusions, did any of you adjust the end times when you finally stopped with the cap? I'm wondering if I need to keep it on much longer while the meds course through my system. Mine will be an all-day 6-8 hour infusion, so we are buckling in for a long ride.
Also, I have a very thick hair, that seems to insulate my scalp. I'm using the Elasto gel caps with the shower liner cap and wet hair, but has anyone done it without? I just don't feel like it's getting cold enough. There are ice crystals in my hair when I remove the cap, but maybe years of skiing bare-headed when I was young and dumb have just made me numb to it?
Any help and advice would be much appreciated. This next infusion could make or break us.
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Congratulations! Thanks so much the inspiration, Pamela23.
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Congratulations, Pamela23! I made it through my first treatment with those cold caps. Oh, how I hate them! I just hope they work. Radiation should be a cake walk for you after this.
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lizjo, I'm using the artic cold caps... which = elasto gel caps. I've had e a total of 7 session so far 4 of a/c and 3 of taxol going for "final" chemo on Thursday the 26 # 8. I have extremely curly hair and while it's not thick as you know curly hair has tons of volume (which may appear as being thick) I have not wet my hair. I cold cap 45min b4 infusion, during and up to 3 to 5 hours afterwards. I also have gone colder than recommended. I believe the recommendation is -35 I've done -40 or -42 and I change my caps every 15 minutes. I have also discovered that if you divide the caps into 2 coolers, they get much colder quicker. Hope this helps. Good luck amiga
Oh and I also to not wash my hair with shampoo I did at first but felt that it made my hair dryer and course and harder to comb even after conditioner. Now I just rinse well with water and only apply an organic conditioner a few times by doing this alone I've notice the difference in shedding in the shower. I would like to say that I've lost so far about 30% of my hair ( feels like more) but realistically only about 30% I don't put any root cover up, blow dry or anything of that nature I try my best to leave it alone as much as possible. I figure when this is over it will only have made me less vain and stronger but I can't wait for 12 PFC where I can wash like normal, get it dyed and run a flat iron through this mop BUT for now I will enjoy and be grateful for this mop on my head.
Good luck amiga
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Hi Ladies. I am officially 12 weeks post chemo. For me, I lost about 30-40% of my hair all over and a lot along my hairline. The biggest shed came after my first TC treatment. After I was done I trimmed about an inch off to get rid of split ends about 2 weeks pfc. I washed using cold water until about week 7. Shedding slowed by that point but was still more than normal. I am still using a sulfate free shampoo. I got a cut and color at week 11 pfc. I have a lot of new growth (lots of wisps at my hairline) and decided to go with a short cut (I've never gone this short before), so that the hair would look better as it is growing out. I have not had any increased shedding since my cut and feel like it is back to normal shedding. Keep up the good work everyone!
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pamela23-so Happy you are finished! Please let us know about what happens and when with your hair! Congrats on being done with the dreaded chemo.
lizjo-I'm sorry I did not reply sooner..you must be just finishing with the infusion..was is 6-8 hours? Is that dose dense taxol? I'm curious since DDtaxol is going to be my next chemo regimen. I have 1 more round of AC next Wednesday. Then on to the DD taxol. I do the wet thing with the shower cap I get icing too. I use cream rinse, but I've been using less cream rinse each time because I don't want to wash after..I have been rinsing after with cold water. I hope you did not do the cap without the shower cap?...I think your hair could freeze to the cap! It should be cold enough if it's making ice. I'm losing a lot of hair! it's a worry but with AC it's tough. Good luck I hope it went well. Let me know if you changed the routine or have any tips. I'm using elastogel too...would like any info you have with the Taxol routine.
Anyone-I have scalp pain sensations. Does anyone have this? It hurts to move my hair. The pain comes and goes in quarter sized spots. I'm really worried its hair about to fall out. I read somewhere that it could just be empty hair follicles that are giving phantom nerve sensations.. I hope that the latter is true, I don't want to lose batches of hair in these spots. Mostly on the crown of my head where I'm thinning the most. So worried about hair all the time!
I also have burnt looking spots on my hands... as someone else was mentioning here. I'm using the elastogel cold gloves on my hands and feet. I'm not getting these so cold like the caps because its intolerable..the gloves don't cover the top areas where I'm seeing the burned spots. I'm not too worried but it is weird.
Pondering stuff. Today I took a bath. So tempting to sink my head down in the warm water...I sat there thinking why can't we use warm water. Then I thought it could be a blood flow thing? Do we want to keep more blood flow up there? Maybe the Cold water thing first constricts temporarily then brings the blood flowing back into scalp afterward to warm our scalp and warm water would cause the opposite. Warming scalp could cause increased flow initially but then the blood flow would draw back afterward? If this is right I might use some ice packs once in a while on my painful scalp pain areas...thoughts anyone?
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Lizjo--what did you end up doing? Most of us are on other cold cap systems. Hope you were able to get through your day. What a LONG day for you!!
I'll post pics in a few weeks. I know I;ve lost about 20% of my hair. Hoping this last infusion is noneventful. I can handle the constant hair in my comb, just praying there's not a big shed!
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Kechla: You look so pretty! Happy to hear from you. Hope you're feeling as good as you look! I'm right behind you and planning to cut/color next weekend.
Pamela - Congratulations! Thinking good thoughts for you that you get through these SEs with ease.
Meow and Luvmyys: Thanks so much for all the skincare thoughts. I'm checking out these ideas. I do think that I'm going to need to do some type of professional treatments. I've been using Odacite products, which I just love (since well before BC). I think it's a great line - it was created by a bc survivor and is all natural. If you're into the Cosmetic Safety Database (Environmental Working Group) thing, all of the products rate as a "1". It does however use a lot of essential oils which tend to be estrogenic. I've heard we're supposed to avoid those if we have ER+ BC. A person could go crazy trying to do everything "right". As an aside, I actually am crazy trying to do that. I saw the Primary Care doc on my onc team and was talking about managing diet, exercise, stress, supplements, drugs, acupuncture, meditation and differing approaches to achieving wellness. Her comments were to be simple and moderate. And that the best thing is to spend extra time with people we love or activities that bring us real JOY. I liked that because sometimes I feel Joy is the one thing that can get lost in this whole mess, if I'm not paying attention.
Meow: My reconstruction went really well upfront (July) but I've since developed some fierce capsular contracture. I had a reconstruction process that was a little bit different - UMX, skin and nipple sparing, over the pec muscle, direct to implant. The initial results were amazing - you couldn't see a difference between my breasts. I've had a few different opinions on how to fix but since they don't really know what happened it's hard to know what's best moving forward. I'm tired and depressed and just want somebody to tell me what to do. I'm sending you best wishes for your reconstruction - do you know when you will move forward? Most people do well!!
So impressed with how great everyone is doing with their hair - I hope one day it will be normal for everyone to keep their hair and it won't be controversial and difficult.
Take good care.
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