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Cold Caps Users Past and Present, to Save Hair

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Comments

  • heidi16
    heidi16 Member Posts: 44
    edited June 2016

    revnet: Thank you, that is interesting. I just reviewed the penguin hair care recommendations again and it just said to not put the head under water while swimming.

    PatinMN: Thanks alot!! I found her posts and it seems like she did use a swim cap which I might do as well. I will really not swim just go into the pool with my toddler so it might be great deal of splashing even if I hold my head above water.


  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited June 2016

    Elise24601 I'm 11moths PFC and my hair is starting to return to the thickness but not all the way there yet I reckon my ponytail is about 1/2 the original thickness it was before chemo so I'm on my way.

  • sarahrae
    sarahrae Member Posts: 52
    edited June 2016

    Phaila

    I'm 6 weeks out from last chemo and still shedding.... some days are crazy bad. Also, hair washing days are still big losses, so I just wash 2x week, sometimes just 1. :(

    BTW, I ended up looking like someone took a razor from one temple around the lower back of the head to the other, no side burn hair left as well as two small bald spots near my crown. I estimate 45% and counting.

    Sounds like it's going to be a awhile before it comes back in :) I have bought a couple new hats and am going to pick out a topper next week. If I use Toppik each day, I can 'get by', but a break once or twice a month from the worry and effort would be sweet!

    Haven't shaved my legs/armpits for 3 weeks.... still don't need to.

    eyelashes and brows still hanging around(using Latisse still)

    all that said, I have been so grateful i'm not needing a wig all summer..... that rules!

    sending hugs!


  • Icandoallthings
    Icandoallthings Member Posts: 28
    edited June 2016

    I'm getting a bit worried... I had my 2nd infusion on Thursday and the shedding doesn't seem to have slowed :-( I have a lot of hair... But I'm losing a lot too.

    My part on the top of my head is getting much more noticeable too and spaced out

    I thought the 2nd shed should be less... Am I still on my first shed?

    image


  • SacCat
    SacCat Member Posts: 24
    edited June 2016

    Runner70, am interested in the Lupron shots; had not heard of that before. Guess I thought my with tamoxifen it wouldn't matter if my ovaries woke up again or not --? I only have one more round of TC to go, wonder if it's too late for a Lupron boost. My oncologist is very difficult and not supportive, so I have to be loaded for bear if I decide to pursue --

  • Aimless
    Aimless Member Posts: 46
    edited June 2016

    Hi all..my question this time is about a WIG TOPPER. Since it would go over what clearly is the most fragile part of my hair - do they do more damage? How do they stay on - those little clips? How often can you wear it without doing harm? NEXT question - since my hair is mostly a frizzy troll mess...I'm wondering if that can be "matched" - or will it look like I've got a strange animal living on my head? Any experiences would be appreciated. I've hesitated going to my salon, so self conscious of what my hair looks like now. I know that sounds dumb...but I guess Ive been in denial about the state of my hair. 3 of 4 TC's down, shedding daily, (day 56) spreading bald spot on crown of my head (about 4 inches around). Using Toppik. Still glad I'm doing this, but boy was I hoping for better results. THANKS!!!

  • SacCat
    SacCat Member Posts: 24
    edited June 2016

    Hi Aimless -- I think it was you who asked about hats earlier; wanted to share this one that I'd bought for jogging last year. It's super lightweight/breathable, and the softest hat in the world. (I told my husband when I got it that I wanted to marry it, I loved it much

    SillyHeart).

    I wear it occasionally, just pulling my hair through the back in to a loose ponytail (without a band). I'm almost 6 feet tall so have a big head, and it adjusts loosely so that I don't feel any pulling on my hair at all. Hope this helps --

    https://smile.amazon.com/gp/product/B00140LDYW/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

  • Runner70
    Runner70 Member Posts: 177
    edited June 2016

    SacCat, yes I'm sorry but you have to start lupron on the first chemo. But really it depends on your age. The closer you are to menopause, the higher the likelihood that your ovarian function won't come back. If you're in your 30's, they will probably survive.

  • SacCat
    SacCat Member Posts: 24
    edited June 2016

    :( Thanks for letting me know, Runner. Another disappointment in my treatment.

    But do you know really what the effect of preserving our ovaries/estrogen production is, if we then go on hormone blockers (Tamoxifen)? My very rudimentary understanding is that they block our bodies' absorption of any estrogen produced --?

    Thanks!

  • SacCat
    SacCat Member Posts: 24
    edited June 2016

    And Runner, we are the same age 45/46. I read that periods only return for 20% of 45 year olds.... But I've been trying to give my ovaries pep talks, letting them know they can go on vacation but that I want them to come back when this chemo-trauma-rama is over!

  • Aimless
    Aimless Member Posts: 46
    edited June 2016

    Thanks SacCat...I actually just bought a nearly identical one from Amazon yesterday...as well as a bunch of extra wide headbands. Still wondering if a wig topper is a bad idea or not (for those times I just need to look and feel a little more "normal").


  • elise24601
    elise24601 Member Posts: 47
    edited June 2016

    Aimless - I too was hoping for better results, but am still glad overall that I'm not totally bald. I can't go out without a loose headband, scarf, or hat at this point. The top, front, and sides of my hair are very thin, the back is still thick as ever. So I have to cover the top basically, as I have a widening part and several bald spots.

    I second your questions about wig toppers.

  • phaila
    phaila Member Posts: 177
    edited June 2016

    I had my period throughout chemo. I'm starting the Lupron shots Thursday. I hope they don't hurt. I'm supposed to be on tamox right now too but they haven't sent in my script. I'm 5 weeks past last chemo infusion. My hair shedding is really really bad:( It's weird, I've also been having that tingly scalp that you get when you're hairs about to shed. I'm not sure if this is soMe delayed chemo reaction, but my shedding this week has been comparable to the very first shedding after starting chemo. I'm really scared. Here's a pick of after shower comb. This doesn't include the shedding throughout the day, during first comb, or during shower. This succcckkkkkssssss!

    image

    I'm wondering if new growth is pushing out old growth? Although I don't see ANY new growth anywhere... Wtf?!

    So if I keep up at this rate my hair will be pretty much gone. Hopefully it will happen when winter hat season is here or fall season. Thing is, side effects of Lupro AND tamox is hair thinning. That's a great up the butt present isn't it!! 😜😡💩👿


  • Aimless
    Aimless Member Posts: 46
    edited June 2016

    Viktoryak, I WISH my sheds looked like that - - take a look at other postings - that's incredibly light, in my opinion. If you are at Taxol 7 - you are doing amazingly well! (I echo Elise's sentiments...I'm also jealous). Hope my shedding is like that 5-6 weeks post chemo. Maybe if so I can get through this with enough hair to continue to "pass." Someone saw me at work today who didn't know what I was going through and complimented my "summer hair do." (Scarf + Frizz = Summer I guess).

    Bab - my cold cap nurse suggested leaving a cap in my regular freezer and wearing it when I'm hanging around the house. I tried it once - but agree with Runner - NOT interested in that experience.

    Phalia - stupid chemo indeed...my language about chemo is a bit stronger. I'm 8 days away from my last TC, then two weeks of lousy side effect (FATIGUE and NAUSEAU and HORRIBLE TASTE) then I count the weeks till my hair stops shedding.... Has time ever moved this slowly? I don't think so.

    It is great having this community to bitch and moan and share with.




  • Icandoallthings
    Icandoallthings Member Posts: 28
    edited June 2016

    image

    so I got sick of pulling chunks out of my hair! Last night I had my husband give me an undercut on the back! Now hopefully the shedding will be lighter!

    We cut it a bit shorter than I wanted, but I didn't have much back there anyway!

    I've saved all my shed hair so far. Pretty sure I could make a second wig with it!

  • DistrictGirl
    DistrictGirl Member Posts: 12
    edited June 2016

    Had my first capping experience with penguin caps at my first infusion yesterday! Honestly was NOT as bad as I thought. I think the first cap wasn't fitted quite right because it wasn't that uncomfortable, so we only kept on for 10 minutes and pretended like it wasn't the first cap, and started new. The second and third caps we did (20m each to start) were definitely more uncomfortable, but after that it wasn't too bad. Maybe because I was on Ativan :):) I was pretty drugged up so I wasn't paying much attention to whether I felt like the cap was fitted right, but I think my husband and dad did a great job and we also had a girl about my age who capped during chemo last year there as our "mentor" for the first couple caps.

    I didn't get the gel headband because my hair is already fine and I have a pretty small head. But now I'm wondering if I should get one - I feel like we had to do a lot of strapping to really get to the hair close to my temples.

    I'm doing this more for the longer term benefits (reduce risk of permanent loss from taxotere and for hair to grow back quicker post-chemo) than for the shorter-term benefits (keeping all my hair thru chemo), so I'm trying to be as relaxed as possible about the outcomes.

    When do the first sheds normally happen? Tried looking backward a bit in the threads - seems like around Week 2 after the first infusion?

  • Runner70
    Runner70 Member Posts: 177
    edited June 2016

    phaila that's so weird because a few days ago my scalp burned some and I seemed to lose more hair, but nothing like what you just showed! Wow! I think we finished chemo the same week. I really thought I was finished losing hair but I guess not. I feel like I barely have any left. It's going to take a couple of years before I have a full head of hair again. Hell by then I might be diagnosed with a recurrence and get to do all this all over again!

  • phaila
    phaila Member Posts: 177
    edited June 2016

    Runner, that's exactly how I feel:(

    And I'm just now reading about how tamox has chance of uterus cancer and hair loss. I'm supposed to start Lupron Thursday but I've been reading about how it's got horrific side effects and there are lawsuits against the makers because of irreversible effects:( Oh yeah, BOTH have hair loss side effects! Great

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited June 2016

    Phalia, if it's any consolation, I asked about the tamox/hair loss thing, and my oncologist said that she saw significantly more cases of hair thinning from patients on the AI's, and not that much from the tamox ladies. She was very definite on that score.

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2016

    DistrictGirl, congrats on finishing #1! I had weekly taxol and barely shed any extra at all, so I can't help with info on taxotere shedding. But I think you don't need to worry for at least the first two weeks. I did not have an extra gel band back in 2012 - I think at that time the gel bands were intended for eyebrows, but noone actually used them for that because the cold was so painful. What does your experienced "mentor" say about the fit?

  • farmerjo
    farmerjo Member Posts: 239
    edited June 2016

    Hi all -

    Newbie to this thread. Saw MO today - asked about cold caps and they looked at me like I was smoking crack.

    Trying to decide between Penguin and Arctic...thoughts?

  • Runner70
    Runner70 Member Posts: 177
    edited June 2016

    phaila I took lupron shots during chemo. They aren't so terrible. Yeah you get hot flashes and night sweats but it's doable. I didn't have any side effects worth suing anybody over. I'm not sure what all the lawsuits are about.

  • viktoryak
    viktoryak Member Posts: 238
    edited June 2016

    I was at radiology appointment today. I am totally surprise her staff had no idea what are cold caps. Can you believe it? Its a shame that medical oncology professional stil not aware about it.

    Just finished my #9 Taxol. Have 2.5 hr left cold capping. Can't wait to finish and eat.. 😱 very cold and tiered.

  • phaila
    phaila Member Posts: 177
    edited June 2016

    Runner, today shedding was just as bad. This is so weird and so bad! It's actually worse then that first bad shed because you start with a full head of hair. Now this shed is on my 30 percent I have left:( This is truly terrifying. I'm really not sure what this is all about... I finger combed my hair earlier and counted 70 hairs. First time I've ever counted. It's like my hair is totally coming out. It's different then the slow instant shed:( I'm glad I found my wig script because I feel, for the first time, I'm really going to need one

    I'm screwed

  • mdg
    mdg Member Posts: 1,468
    edited June 2016

    Farmerjo: Most people have had better results with PCC. People here have used both though. I used PCCs and was very happy with results.


  • CancerFreeinFL
    CancerFreeinFL Member Posts: 1
    edited June 2016

    To all South Florida residents: I am writing on behalf of my wife, who will be starting chemo soon. TCHP regimen. Penguin cold caps arrived in the box today. haven't even opened them. . . .

    We are wondering if there are any experienced "cappers" in South Florida who might assist us in the first treatment.

    If you are such a person or know someone, I would appreciate your sending to me a private message.

    Thanks


    (Edited by Mods to delete member's personal email address. We strongly recommend not posting personal information on a public forum, for your own privacy and security.)

  • viktoryak
    viktoryak Member Posts: 238
    edited June 2016

    the reason I decided to go with Arctic CC because they were much friendlier and offered Skype training. Plus cheaper. As for PCC lady was edgy and offered a cold capper for $750 a day. Adding all cost it was extremely expensive. So we went with ACC..hope it Will work at the end. So far a bit early to say.I just had #9 weekly Taxol and with Taxol it is a bit easier and different pattern of hair loss that most girls have here.. Sometimes I think maybe I did the wrong choice.....I am not sure how PCC caps work but there is chin strap, but after we put all straps it is extremely uncomfortable and painful. Other then that all seems ok.

  • sarahrae
    sarahrae Member Posts: 52
    edited June 2016

    I am also having heavy shedding that started 2-3 days ago, 6 weeks post final chemo. Weird too, because I was finally starting to feel like the shedding was back to before chemo levels. I am also down to about 35-40% and am right on the edge of needing a wig(topper) whenever I leave the house so every hair I lose is super stressful at this point. I am wondering if the increased shedding is related to hormone levels. 4 weeks ago when I got my period was still shedding hard, not so this time. Hoping that if it is indeed hormonal, it will end soon...

    After radiation I'm due to start ovary suppression and AI, both of which are not hair friendly :(

    Come on follicles!! still taking my silica daily :)

    Also taking a great calcium complex on the regular in order to get ready for the bone loss from the AI's.... harumph!

  • elise24601
    elise24601 Member Posts: 47
    edited June 2016

    For those who are post chemo and still shedding - are you also experiencing any new regrowth? Or is it only more loss?

    I got a wig today just in case. :( Cold caps kept me from the trauma of going TOTALLY bald (so far, on 3rd TC treatment) but not of seeing tons of my hair fall out over several weeks, leaving me with a patchy head and stringy, thin hair, which has been extremely emotionally painful. Someone tell me it will grow back decently!

  • zinny
    zinny Member Posts: 169
    edited June 2016

    Almost 10 weeks PFC…and shedding more again, too. Might have to do with 1) switching to a normal brush 2) using the hairdryer ( albeit on warm not hot) 3) using the shower with warmer than skin temp water 4) using hairspray ( Aveda, but still)…

    I was so sick of the rules…just had to do it…wanted to look decent for a bit!

    So now back to babying...

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