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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited August 2014

    I wish I found this tip when I was trying to regrow my lashes...

    First, apply the first coat of mascara. Then dust lashes with the baby powder, let it dry and stick a bit. Then add another coat. Repeat the process until you reach your desired effect. The powder grips the mascara in between the coats. The result will be fuller lashes.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    kazzy, so happy to hear of your success, especially since you are on ACT!  Yay!

  • ciaogina
    ciaogina Member Posts: 33
    edited August 2014

    Warrior--Yes--a friend has been making me lentil soup and I have been eating that. My mom has been making escarole soup too. I do like soup and eggs. Just hope I still like them after all this---I am a BIG breakfast person, so I'd hate to see the eggs go…. We'll see. My hubs brought me some water ice---even that tasted weird, almost salty--instead of sweet. Ugh!!

  • wyomama
    wyomama Member Posts: 79
    edited August 2014

    ciaogina- I have iced during each treatment and can't seem to make the taste issues go away. But I'm going to keep doing it do I don't get mouth sores. 

    My worst taste change starts around day 4 and lasts a week. Then each day gets a bit easier, until the next treatment. Ugh. 

    I eat creamy soups and all kinds of fruit. I've also started eating spicier food. I eat a ton of spaghetti squash and angel hair pasta. Other types of pasta also taste gross to me, which is weird. Why aren't you eating fresh fruit? I do all the time, I hope that a not bad. I can't eat bread, and most meat just tastes nasty. I do eat steak once a week right now for the iron. It does not taste good. 

    I have such crazy food cravings, but don't try anything for fear it will taste bad. :(

  • barremom64
    barremom64 Member Posts: 122
    edited August 2014

    Hi All- New to this cold cap process as I just found out I def need chemo:(  I apologize in advance for these perhaps "newbie" questions.  I am committed to using a cold cap system and just trying to piece how it all works. How does one preserve eyebrows and lashes?  Does the consensus find that Latisse works to KEEP brows and eyelashes? If so how do you all recommend  one use it?  Before during or after chemo treatment?

    Thanks in advance :) 

  • Gatomal
    Gatomal Member Posts: 418
    edited August 2014

    Hi. Kazzy115, 

    I will be starting 4AC and 12T next week, but I wanted to know how long you left the cap on after your infusion was complete. The med ctr study coordinator said two hours, but PCC said 4 1/2 hours. I am leaning toward leaving it on longer than two hours, since the AC regimen may give more complete hair loss. How many hours, on average, did you leave it on? I assume you used it for your T treatments also?

    Thanks and good luck!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited August 2014

    Gatomal - The standard is 4 hours post chemo although PCC may make different recommendations for your protocol.

    Barremom - I used Brian Joseph's lash and brow conditioner and although my lashes and brows thinned they were always there.  I switched to DermStore's Smart Lash as I found it helped them grow back even better.  Lots of women had success with Latisse too.

  • jennliza
    jennliza Member Posts: 176
    edited August 2014

    gatomal - I've been doing all 8 caps...twice. My infusion is 4 hours including premeds...so I guess I wear them 4 hours after chemo. 

    Barremom - I've been using RapidLash...bought on Amazon. I'm only 1 month in...and hear they often fall out after treatment. I apply to lashes (top and bottom) and eyebrows. Plan to apply daily through treatment...and post treatment as needed.

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited August 2014

    Gatormal - PCC's protocol for me was 4 1/2 hours post infusion.  Since either the first or second taxol I've actually done 6 hours in hopes it would help.  I tolerate the cold quite well using only 2 tynenol at the start.  They are long days though. I have heard taxol was easier on hair but I'm not convinced. Maybe that has to do with the higher dose every two weeks for four infusions.  Or maybe the increased shedding is cumulative result of all 7 infusions I'd had.  

    I had no issues with my eyebrows and eyelashes until the last week and a half. Otherwise very slight thinning but not noticeable.  It's definitely noticeable now.  In fact the PA  in the PS office last Friday asked if I was doing chemo indicating the only clue indicating it was my lashes.  

  • eloqui
    eloqui Member Posts: 37
    edited August 2014

    TC Chemo #3 out of 4 coming up tomorrow!! Wish me luck!

    After having a ton of shedding after TC #2 I was pretty worried. The amount of hair left after showering looked like a small animal died in there..

    This past week or so the shedding has decreased - still shedding a lot but less. And still have enough hair that I don't need a wig or anything.

    Hair feels much sparser than before though, maybe 60% or so of normal. But I had extremely thick hair to start off with. Those who know I'm going through chemo say that my hair looks the same.

    Just want to reiterate the above for everyone worrying like me - it's amazing how much hair you can lose and still look "normal"!

  • barremom64
    barremom64 Member Posts: 122
    edited August 2014

    HAPPY #3 eloqui! You're almost there! I am going to starting 4 rounds of TC within a few weeks. How did you tolerate the chemo??

    Good luck tomorrow :)

  • Hortense
    Hortense Member Posts: 718
    edited August 2014

    Blued eyed women should understand that Latisse can permanently change your blue to brown. I chose not to use it.

    Ciaogina - I found eating watermelon, canteloupe, strawberries and other very juicy fruits helped me get through chemo. I hated the taste of water and most drinks, so eating water-y fruits helped me stay hydrated. You have to see what appeals to you. I discovered that particular foods and drinks I liked varied. If I liked V-8 Fusion, pea soup and hummus during one round, after the next round I might not be able to even look at them. Usually I grazed on a little bit of everything I could tolerate. For some reason, I still can't face hummus or V-8 Fusion.

  • kpmacmill
    kpmacmill Member Posts: 69
    edited August 2014

    Hi Kazzy - So great to hear an update from a fellow AC gal. I'm still in the throes of my first (hopefully last) major shed after 2 rounds. I'm on Day 23 today, still collecting hair in baggies - probably a couple hundred strands a day for the past couple of days. Just hoping it slows down in the next couple of days. My next infusion is Wednesday and I can't wait to walk in with hair to show off to the naysayers at my clinic. I'm doing weekly Taxol afterward, so I hope it's kinder to my hair.

    I've been at Cape Cod for the past two days for a quick getaway, and sitting on the beach yesterday (under my umbrella with my hair in a loose ponytail so it wouldn't all blow way), I said to my husband - "there's not a soul here who would know I'm in the middle of chemo." It felt so good and normal to just look like everyone else.

  • Gatomal
    Gatomal Member Posts: 418
    edited August 2014

    Oh kpmacmill, so glad you have posted! I have been anxiously awaiting news from you. I have the cold caps, ready to go in the freezer at the med ctr, and have been debating whether or not to bother, since my surgeon said 50/50 (she) and my MO said they don't work (he). I think the process is adding about 50% more anxiety than the chemo itself. 

    I was thinking " just shave it all off now, be brave" but my husband said "we have them, let's just give them a try". There are not as many AC then T folks on this board, but maybe that's because they weren't offered enough hope to bother. Did you wear them afterward for 4.5 hours? I think that seems to be part of the success of some users. 

    Even if I lose 60% of my hair, to have a bit of length, and then have short growth fill in, and then get it cut shorter to even it out a year from now seems much less traumatic to me than no hair at all. Frankly, this fear is the one that I cry about more than the treatment itself. It's just so altering, and takes so long to get back to normal, and some (few) may never have the same thick growth. I can do sick. I can do feeling extreme fatigue, and SEs. (Said as a true newbie, huh) but the HAIR. It IS a big deal. A long term reminder until enough time passes to get back the length you had. Good luck to you. Keep posting so folks in the future can see your experience. I will post here too. 

  • Daye
    Daye Member Posts: 63
    edited August 2014

    Just an fyi about Latisse- The eye color changes only occur in patients who use it as eye drops(rather than painting it on eye lids) for treatment of glaucoma and those are even rare instances.  They still list it as a risk factor when using it as a lash enhancer, but there were no reports of eye color changes during the clinical trials.  I have blue eyes and did use Latisse for a little while without any effects on my eye color.

  • jc254
    jc254 Member Posts: 332
    edited August 2014

    "there's not a soul here who would know I'm in the middle of chemo." It felt so good and normal to just look like everyone else.

    kpmacmill,your statement pretty much sums  up what cold caps are all about.  Glad you're hanging in there.  I'm keeping my fingers crossed for you that the shedding slows soon. 

  • RainDew
    RainDew Member Posts: 228
    edited August 2014

    hi ladies,

    Thanks for the updates :-)

    I am now day 29 with very minimal shedding - assume that's because I have had to put off second infusion due to infection. #2 is now next week, so I assume the panic begins a few days after that.

    I have a couple of questions about latisse, which I am considering (lashes already looking thin - they were never great to begin with). Did folks use this DURING tx or after? I'm happy to buy it now, but it is very expensive and I am curious if it is worth it while still in treatment?

    Also, is it always cheaper online? Never w a derm Dx?

    Tx!

  • DaniellaD
    DaniellaD Member Posts: 228
    edited August 2014

    Hi - I haven't gotten my chemo plan yet but expect it to start sometime in the next few weeks.  So I am gearing up.  What I know about Latisse is that it takes 8 weeks to work.  Women earlier in the thread said they still lost lashes with Latisses (some did) but they didn't start it until chemo was underway.  So maybe that is the deciding factor.  I started Latisse at night and rapid lash in the morning (when I remember) to get ahead of it.  You don't need an rx for it anymore.  Go online and buy the generic Careprost.  

    I am also started the vitamins suggested, stopped dyeing my hair (even though I am already in desperate need of a touch up because I look like Cruella Deville!) I figured I might as well not dye it to get my scalp in optimum condition. I got a trim the other day and it just made me cry because I know it's the last time I am going to get a hair cut and walk out with pretty hair for a long time.  But I am determined to keep this hair no matter what!  So I may look gray, stringy and greasy, but it will be there - failure is not an option!

    Question, has anyone made their own elastic straps for the caps?  I am going to order the extra ones but I heard some people made more to make it extra tight.  Also, anyone in the NJ central shore area completing treatment? I wanted to see if maybe I could borrow, rent or buy some pre-owned coolers and thermometer.  Thanks and good luck to all the ladies!  You are all in my thoughts and prayers!

  • PatinMN
    PatinMN Member Posts: 784
    edited August 2014

    Daniella,when are you starting chemo?  What chemo are you getting?  I did a color a few days before starting chemo, with no ill effects.  My colorist at the salon bought an organic color for me, and it looked great (for a few weeks until my roots became obvious).  But I did weekly taxol which is less hard on the hair than most other chemos.  Don't worry about the "greasy" look - your hair will quickly get used to the less frequent washing and it will look better than you think.

  • DaniellaD
    DaniellaD Member Posts: 228
    edited August 2014

    PatinMN

    Still don't know when I start since I'm not meeting with my MO until 8/20.  I am triple positive so I kind of have an idea of what the plan is going to be - either tch or t + h.  I am not doing ath or whatever A combo they come up with because it's too aggressive for my cancer and I am concerned with cardiotoxity.  (In my prior life I represented pharma companies so I have a little bit of knowledge when it comes to drugs and the studies but am by no means a doctor.)  My colorist bought me the organic color to use the other day when I was there for a trim but I just decided to skip it.  I am using the gray cover mascara and Rita Hazan color spray.  I wonder if you can use the color spray during treatment?  Haven't seen anyone talk about it and it works great.  I also saw some filler powder that is applied sort of like eyebrow powder for your hair - to color and make fuller.  Probably something good for after treatment until life goes back to normal, maybe?  

    I'm going to PM you about taxol.  I read the study from last year and am curious.  Thanks!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    Daniella - I used my own extra elastic straps to increase the tightness of the caps.  I had some straps I use to hold cold packs on my knee, etc.  Worked like a charm. 

  • DaniellaD
    DaniellaD Member Posts: 228
    edited August 2014

    Dancetrancer - what type of elastic straps?  Like Ace bandages?  Sorry for clogging up the message board with my silly questions. Thanks!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    Not an ace bandage b/c it is too elastic.  I have something very similar to a Nylatex wrap, which I think would be perfect for this use. 

    http://www.amazon.com/s/?ie=UTF8&keywords=nylatex+wrap&tag=googhydr-20&index=aps&hvadid=1099972961&hvpos=1t1&hvexid=&hvnetw=g&hvrand=6764009063072771226&hvpone=&hvptwo=&hvqmt=e&hvdev=c&ref=pd_sl_1pzxp2n703_e

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2014

    Let's see if this makes the link work: Nylatex wrap

  • mdg
    mdg Member Posts: 1,468
    edited August 2014


    I used latisse for a while during chemo but then I got the chemo watery eyes so I just stopped using latisse.  I started using it again when lashes started thinning.  At that point when my lashes fell out, I looked closely and saw there were tons of new lashes sprouting already.  My new lashes were grown in within 2 weeks.  They looked normal to others but were still not as long as my regular lashes were.  I just wore my glasses more and put more eyeliner on so it would not be as noticeable. 

  • DaniellaD
    DaniellaD Member Posts: 228
    edited August 2014

    thanks dancetrancer - I put in my amazon cart ready to order.

    Mdg - I've read every bit of your blog. Thank you for the inspiration.  Did your eyelashes ever grow back to their normal length?

    My eyelashes naturally touch my eyebrows my whole life.  I've always been known as the girl with the really long hair and long eyelashes.  I feel like this stupid cancer is trying to strip me of every trace of me! I just ran into my cousins grandmother-in law at the supermarket. Granted she's very old and probably wasn't thinking.  She asked how I was feeling. Then said "oh, but all your hair is going to fall out."  I almost burst into tears. I just said "no it's not. Nice seeing you" and kept moving.  Then got into the car and cried my eyes out (which only made my baby cry, too and probably caused more hair and eyelashes to fall out.) I just hate this stupid cancer and everything that goes with it! I feel like everyone is just waiting to see me bald.  It's so upsetting.  I know it should make me more determined. I know there are almost 400 pages of success stories here. But I'm just so scared. Ugh. Sorry for the rant. I sound so vain but I just want to do my treatment and put this behind me and still be me. 

  • hope49
    hope49 Member Posts: 239
    edited August 2014

    Hang in there, Daniella.  I think we can all relate to how you are feeling, it's so scary and overwhelming and to add the stress of the capping process is sometimes just a bit too much.  But you will keep your hair and each round you'll be a little more certain it's working and you'll show the skeptics!  Soon you'll be another success story and talking a new capper of the ledge.  Stupid cancer indeed!!!

  • mdg
    mdg Member Posts: 1,468
    edited August 2014

    Daniella -this has nothing to do with vanity.  It has to do with trying to feel somewhat normal while going through something that is horrific.  It's about not shouting out to the world "I HAVE CANCER.....I AM SICK".  It's about not getting stupid comments from people. It's about privacy and dignity.  It's about not getting looks of pity.  Don't feel bad about that......  Be kind to yourself.  I had the crying outbursts A LOT.  My poor son (age 4 at the time) thought I had some bad "tummy" problems.  Every time I needed to cry I ran into the bathroom put the fan on and closed the door.  When I would come out I just said "oh, Mommy's tummy didn't feel good".  I hated lying but I didn't want him to see me cry like that.  I was petrified.....you know that if you read my blog.  I am sure you can see we all have a lot of the same feelings.  This is scary....really scary.  Take it one step at a time....one day at a time.  Caps work for most people.  My eyelashes did grow longer again.  They were really thick at first when they came in probably because of the Latisse.  Now they are a little thinner than they use to be, but they are still there.  Have faith..... Hugs!

  • barremom64
    barremom64 Member Posts: 122
    edited August 2014

    Hi Daniella- Your cousins mother-in-law  that you met in the store has "old school" thinking. This is progressive thinking. Believe You'regoing to be successful!  File her comment under "stupid things people say to people with cancer."  ((HUGS)) to you tonight...be strong! 

    You're going to kick butt with this cold cap and so am I!  We''re in this together!

  • jennliza
    jennliza Member Posts: 176
    edited August 2014

    So I'm a couple of days past my 2nd treatment...I lost about 160 hairs yesterday but only about 80 or less hairs today. I researched how much hairs we have on our head...it varies, but one can assume @100,000 hairs. If you lost 150 hairs/day for 180 days...you still haven't lost more than 30% of your hair. This helps me put it in perspective. I think by nov/dec...my hair is going to look awful...but hair should start growing and will be 70% ahead of the game.

    I haven't bought additional straps but think  I will. Found stretchy Velcro straps on Amazon for a lot less...that is basically what they give you...

    And MDG...you said it well...this is not about vanity...it's about keeping some level or normalcy...privacy...dignity.  No pity stares from strangers...

    I'm getting sleepy...I guess the steroids are out of my system...time for a sleepy weekend post treatment! Hoping everyone has a wonderful s/e free weekend. I know I won't...but hoping it's minimal!!

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