Cold Caps Users Past and Present, to Save Hair
Comments
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hi Pamela,
Yep there's a lot of empty spots under there. But I'm super happy how my hair looks with the comb over! I'm not losing any around the bottom. Just completed my third AC chemo! Only after snow delays and fighting driving over two mtn in passes that just opened...and horrid road condition! A motorist was killed by a tree on one of our alternate routes!
By the time I got to infusion I was super amped up over the storm and drive and me starving to death. I took Ativan but the caps hurt way more this time! I was not happy. Could not stand the hand feet cold mitts at all.
We survived! But This time my left ear topside kept hurting, I was complaining of it..my heroic cap men kept checking it but..now I have a fluid filled frost bite blister on the top edge of ear!...Oops! Anyone had this? Should I be worried at all? We used our normal feminine pads for ear covering. One thing my guys they did different the caps storeage..the started putting caps in ice after they lined the color with blocks.. then smashed other blocks into small chunks to completely filled caps. They shoved them down in rim side down, to get the sides more cold. The also always spend a load of time working the wrinkles out of the wrinkle problematic elastogels. Can't have wrinkles need a smooth fit Or frostbite will happen. This time the sides were really cold and reached my eyebrows! I was trying for eyebrow coverage the whole time! This round it happened
But I damaged my left ear! Hope frostbite blister it heals before next round! Anyone get this?
My hair was icing up a lot too.. I used my normal conditioner. I also lightly rinsed in cold water before bed. I'm getting superstitious about changing my routine. Wanted to use just water. Note. I did used less conditioner more just water and I got more ice.
One more note...elastogels chin band useless...we made our own straps for tightening. I also use a very tight 8inch wide large stretchy head band. Head covering head band from Kmart this is awesome for tightening to really get the caps unversally tight. I have a super large head too. We put a ski hat on to insulate cold escape.
Will see if I get the dreaded frost it flaking in got on the top on the first round. It feels fine though.
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Sitting in chair right now for last carbo/taxol. Caps are extra cold today for some reason! I have a heating pad on my chest which is a life saver. Hate walking to bathroom with these things on passing other patients and wondering what other they must thinking about this weird thing on my head. Just 4 hours to go
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hi janetsam..be careful with hot pad too hot.
First round AC chemo. I got a chemo heat rash on my back from doing a heat pad there...just make sure pad is not too hot. We believe heat draws the drug to the skin. I do use a little heat in my armpit to draw chemo attention where I have still have my large cancerous lymph nodes.
Heat same as ice just reversed. My oncologist did not poo poo this idea at all after viewing my rash.
Good luck todsy
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Catgirl--I've been using a colored powder called WOW! that you can get at Ulta. http://www.ulta.com/root-cover-up?productId=xlsImp...
It only washes out with shampoo, no smell, no mess and I am LOVING it! I keep my hair down anyway so my grays are only at my part line. I've grown out about an inch of gray roots so far. I'm someone who goes in every 4 weeks too. I'm not sure I would be putting chemicals on your hair so close to your first treatment. Maybe try the ammonia free color wash that IL311 just used. I think Clairol has a brand of that. As long as it doesn;t say permanent color. It should wash out within 10-12 washings and since you wash less during cold capping, it should get you by for awhile.
Luvmyys--I used the fake lashes that are partial lashes (like 4 lashes only and they give you different lengths depending on where you are placing them on your eye), not a traditional full lash. That way you can just fill in the spots in between your real lashes. I only used them at Christmas but they were great. Looked really natural. I got the at a regular drugstore.
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- Fasting to save some normal cells from dividing during chemo...logically works like cold capping
for those of you do it yourself take charge types...you capers are these gals!
http://news.usc.edu/103972 /fasting-like-diet-turns-the-immune-system-against-cancer/
The link above is only partly blue (hyperlink) ...for more in depth info try to get the end part. fasting-like-diet-turns-the-immune-system-against-cancer/ Or type it in..
The Patent for Professor Longo's approach. Includes lots of technical information.
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elastogelgirl thanks for the heads up re heating pad. i moved the pad to my tummy after reading what you said about blood flow and chemo going to areas where there is warmth (uterine cancer) i spend a lot of time manually pressing the cap against my scalp as it doesn't fit perfectly and do not like the strap. i am figity anyway so no big deal. home now and a few more hours of cold-capping! i have quite a bit of gray-salt and pepper chemo curly hair (from first series) which i am loving and i feel confident i will not lose much more. big shed after number one, almost no shedding number 2. And just because i am a rebel, i have been washing my hair every day as usual because it made no logical sense to me not to but everyone's mileage may vary. Will post pics ina few weeks. oh, 20 min changes seem about right. and would have bought 6 caps to be safeif i had to do over but temp readings were about right with 4.
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Pamala23 - Thanks for the tips on the root cover! My grey hair will need that for sure!
I'm stressing about the cold caps more than I am the chemo SE. I wish they had professional cold cap helpers here.
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Hearing how much work cold caps are make me really really appreciate that i had access to a Paxman scalp-cooling machine. Put the helmet on once, feel cold for ten minutes, then forget it. I am impressed with all of you who have done the more laborious cold-capping. Goes to show how valuable it is to us to remain less visibly altered by chemo. I am proud of all of us for helping make it easier for women navigating breast cancer treatments in the future.
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okay, so I got frostbite on top edge of my ear!
Oops! I guess the feminine pads had a thin area! Don't take this chance..moleskin or baby booties for me next time?
I remember complaining a bit about ear pain..my guys kept checking my ear. They thought it was covered fine. The caps were colder on the edges because we were packing them in the ice differently to get the edges cold enough..
I obviously got numb enough to forget about the pain.
Anyone else get this? It alway s worry on the scalp too. I'm super worried as my hair is thinning all the time!
The blister is by the white spot on my scarf.
Oh and are scarfs okay? I read no...but bad hair days are tough. Need ideas for partia head covering.
I still have my hair and I still think it's worth it.
Anyone think my ear will be okay? Or? The dark areas are freckles. The frostbite blister is on the top to the back edge. About 1/4 wide and 1inch long. It hurts a little. I'm obsessing as usual.
I'm doing well after chemo day three. Neulasta pain not too bad with claritin. I think my fasting mimick diet helped immensely with the side effects. I've been eating a ton to catch up on some weight loss.
My whole ear looks icky in this photo buts it's really just the blister I'm worried about.
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Elastogelgirl, you can put polysporin on your frostbite and keep it covered so it heals quickly. Use a wig cap for protection on bald spotfor capping that's what my cap nurse told me. Hang in there your doing good!
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Meow0369 thanks much for reply,
So I'm less worried now thanks. I don't think I can cover ear without popping blister but I have been putting neosporine bacitracin on it. I'll get polysporin if that is different. Thanks.
I'll google wig cap? I just have loads of thinning so far..crossing fingers I won't get any really open areas though I'm trying to be prepared for that. I think my hair has thinned much after three AC treatments. I lost more than usual this am..
Thanks again
Hugs
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Hello -
Elastogelgirl - Glad to hear you are doing well after treatment, except for the ear. Ouch! It should be ok by next time, maybe double maxi pad it. My ears always hurt but haven't gotten frostbite. So sorry.
Catgirl2 - Yes, the capping is more stressful sometimes than the treatment but it's a distraction. You'll do great.
My hair is really thinning out. I avoid combing and looking in a mirror. So frustrating. I have two dd Taxol left. No bald spots, even coverage but very thin.
Opinions from past users whether washing more or less frequently make a difference? I lose so much at washing I don't want to wash but does it really matter or will it come out anyway at some time when I wash? Delaying the inevitable? I have treatment on Tuesday. I should have washed yesterday, but too nervous. Thinking of delaying until the 3 days after. But maybe too much buildup if don't wash before now will cause worse thinning? Any opinions helpful!
Also I've had bad night sweats. Doctor gave me Gadasopm, something like that.. take it before bed..stopped them completely. Will use through hair dilemma because it's hard having thinning dirty hair that gets drenched each night several times... what a morning mess.. once I can wash hair more often then will get off them if sweats continue.
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Elastogelgirl - So sorry about the ear. I guess I'll use moleskin.
Luvmyys - I was wondering about the washing frequency myself. I'm really not looking forward to all of this!
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Luvmyys, can you please post the exact name of the stuff your using for night sweats. Couldn't find it with the spelling. I see my MO Tuesday. Thankyou.
My hair thinned pretty good I washed sometimes once week sometimes longer depending on shedding. Some say it doesn't matter once follicle dies it'll fall out anyway. Everyone is different.
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luvmyys- I always wonder that about washing hair too. Is it just loose and waiting to come out anyway? Seems The less you mess with it the more you will see once you do wash... I'm lucky my hair doesn't get too greasy. I'm washing once a week with watered down shampoo cool water and no scrubbing.
Catgirl- what type of cap are you going to be using? If it's a dry ice type just be really extra careful about coverup over open skin. And make sure caps are even temps. My guys may have not measured the edge of the cap where I got the frostbite! it could have been much colder than -31f. My ears were covered according to my guys. good luck I'm sure you'll be fine. I posted my ear photo to add some Awarness and caution to this problem for sure.
The caps are a difficulty but it makes chemo go by really fast. Total Distraction from the drugs. Plus every day I have hair I'm happy with the effort.
Anyone-My big thing is I want to cover my hair. Is anyone wearing scarves? I also need hats for the cold. I'm still using a shower cap over my bandana scarf then a hood to go out in the cold. I really want to ski a little bit at some point soon here after the current holiday. I have not figured out how I'm going to protect my hair under a helmet or a ski hat.
Now I need to figure out what to do about the frostbite ear. I'm thinking a Cotton balls build up with tape then my shower cap and coat hood maybe. Bummed about ear. I Fear it will be a slow healer!
My port scar is still not completely healed after 8 weeks. Took forever.. Ear is a no blood flow area! yikes it might take forever.
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I wore different hats but didn't wear them tight or pull down hard. Some ladies wore wide head bands.
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Meow0369
yes I'm trying those wide stretchy headbands. They are perfect for what I would like but unfortunately My head is huge. Everything that is for a female fits super tight on me.
Thanks for replying. I'm using the tight head bands I bought from Kmart to hold my cold caps on tight! So they are good for that!
I guess it's the silky bandanna shower caps thing with cotton on my ears. I'm going to try to cross country ski today
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Meow - it's Gabapentin. I had bad night sweats 3-4x a night. Did all the cotton pjs, window open and it didn't help. First night I took it none and none since. It's says for neuropathy, convulsions, lots of things when you google it .. It was prescribed to me for night sweats only, do not to have the other issues.
I take 300mg right before bed. I've also noticed it helps me sleep better. Maybe there is a holistic approach I'll try once through all this...
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Elastogelgirl: I'm using the Penguin Cold Caps. They require dry ice, so I will be careful about my ears. I got an infrared thermometer for my fiance to use while capping me so he can check the temperature quickly. Be careful in the cold with that ear. Just make sure it's covered well. Maybe earmuffs over the cotton. Trying to live a normal life while dealing with cancer is such a pain in the butt!
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I used Penguin caps, and my hair insulated my ears well enough that I didn't have to use any ear protection at all. Elastogelgirl, could you let your hair cover your ears with the Elastogel caps
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Luvmyys, the most common holistic remedy for hot flashes and night sweats seems to be sage. Sage tea or sage supplements. I haven't tried it myself, but my hot flashes did seem milder and less frequent when i was eating soy products. I'm a longtime vegetarian. The pendulum has swung a couple of times on soy and breast cancer, with the current best evidence being that moderate soy intake is either beneficial or inconsequential.
I have been on Lupron to shut down my ovaries since August, but chemo really slammed me into chemopause. Post final chemo, my hot flashes went away thank dog. I hope your night sweats don't last much longer.
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Re: washing frequency - I tend to agree it seemed the washes released hair that would otherwise have dropped anyway. However, i did definitely notice more post-shampoo shedding when i used warm water. Cool water for best results for sure. It might just delay the inevitable, but no one wants post-shampoo shedding.
I'm inclined to think the advice some companies give to avoid conditioner is unfounded. Conditioner on the lengths below my ears helped reduce tangling and kept my hair silky all through chemo. Just my opinion.
Washing too infrequently can apparently allow scalp skin cell buildup to clog follicles, so on balance shampooing once or twice a week seems about right. At 11 weeks PFC, i'm still washing only twice a week and it seems like all i need. Was a daily hair washer before chemo, and i know that is not ideal even at the best of times.
Best of luck to everyone keeping their hair on!
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Luvmyys, Thankyou! I suffered so much w night sweats and told my onco and offered nothing. I'm like WTH! He wouldn't get it being a man. If he would of offered something to help me do more treatments I would of.(severe muscle shutdown all over) We are in 2017 now and to face what we face we shouldn't have to suffer. At least be given the option (some meds have side effects).
I have 3 kids and not getting sleep is the worst ,the whole family suffers with me. (Us)
Tunegirl, Arctic caps nurse said we can use organic conditioner and detangler.I came across somewhere to use " clear" organic too. Also I am drinking soy milk to help hot flashes. It's help some. I like to refer to Dr Weil recommendation to eat (real) soy twice a day. Stay away from isolate soy products/ ingredients. I hope mine go away too. Do you think yours stopped due to ovaries totally shutdown? Wonder if after I have mine removed night sweats will stop.
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Hello - ok so I washed it and the shedding wasn't as bad as past two. I am using Tunegrrl's shampoo recommendation. I really like it, easier to comb my hair out. This is my hair dry after washing. Didn't do anything except I switched my side part, which was wide, to the middle. Love the dark roots! This is after 4 A/C's and 2 dose dense Taxol, with 2 more to go. Think I'll have some left?
Meow - I know what you mean I have two small children and it's tough when mama's tired and going through all this too.
Tunegrrl - thanks for sage tea info and number of washes confirmation. maybe I will start drinking some teaand see how I do..The less scripts, the better.
Happy hair week ladies!!
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Luvmyys: Your hair looks good! At least your roots are dark. Mine will be white! I have to color every four weeks because of all the grey. The next several months will be an interesting look for me. I just hope I can keep as much hair as you.
Tunegrrl: Thanks for the washing tips. I also wondered about the conditioner. I would think putting it on the ends would make it much easier to comb through with less tugging on the roots. I should be receiving my caps today and practice tomorrow for my Wednesday opening chemo act. I hope my fiance is up to the task. It sounds like a lot of work for him. I really wish I had access to a medical facility that offered the Paxman cooling machine. Unfortunately, I live in Missouri and they always seem to be a step behind.
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Hi Elastogelgirl, i used these
Sprigs Earbags with Thinsulate from Amazon
never had any problems with frostbite hope it helps
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Luvmyys- your photo is my inspiration! Thank you!
I'm behind you by 1AC and 2 taxol! I think my hair is thinner than yours maybe, but we have the same type of color I think. It's so scary to shed! Keep posting photos if you could. Or send them to me.
Hugs elastogelgirl
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jstan81963
thanks!
I just bought them! My ear is less fragile this am.
Elastogelgirl
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I cut the toe out of a pair of socks and fit it over the top of my ears. It worked pretty good until the soc got wet. But I guess for people not wetting their hair to cold cap it would work fine.
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hi cat girl. My cold cap therapist from penguin whom I hired fir first infusion told me to get rolled gauze. I got it at cvs. It's to prevent hour hair sticking to the cap due to the coldness. And don't forget the pantry liner to put on your forehead Andover your ears. Good l
Luvmys. Your hair looks great. I had wash day yesterday and wasn't too bad. I just can't wait for all of this to be over with. I want to start feeling normal. Doing normal things with my family.
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