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Cold Caps Users Past and Present, to Save Hair

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Comments

  • makingway
    makingway Member Posts: 465
    edited January 2013

    Susan-I was contacted by someone needing help who lives in your area. Can you please PM me or email me with your telephone number. I sent you an email and haven't yet received a reply.~Thanks!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2013

    Susan - HUGE congrats on hitting the 3 year mark - cannot wait to get to that point!  Monumental indeed.

    Great idea on saving the chemo curls in a bag...I have some growing in under my poker straight hair...love them - give my hair some body it never had!  

  • schoolmom
    schoolmom Member Posts: 327
    edited January 2013

    Just got back from my visit with my onc.  Last of four chemos is Monday.  He was once again so impressed with my hair and asked my to explain the cap use again.  He said a lady is going to his office in the Woodlands for treatment and is arranging for a freezer from the rapunzel project.  His office will be the second in Houston  (after Methodist hospital downtown) with a cold caps freezer.  He is also looking into a freezer for the Kingwood office where I go.  YEAHHHHHHHHHHHHH !!!!!!!!!!!

    I have an appt on Tuesday for my Neulasta shot and then off to see the radiation oncologist to get the plan for radiation. 

    All my bloodwork is good, he said I am tolerating the chemo well.....only bummer is he leaves the port in for 6 months!  So about the time I can color my hair, I will get the port out.  July here I come!

  • 301724
    301724 Member Posts: 185
    edited January 2013

    Any advice for hair care in the sun and water? I'll be at the beach (!) for a couple of days later in the month. Sun hat? Yes or no?

    Thanks!

  • 301724
    301724 Member Posts: 185
    edited January 2013

    Schoolmom - that's great news - both for you and for women in Houston!

  • cypher
    cypher Member Posts: 447
    edited January 2013

    good job schoolmom!  You go girl!

    Congratulations Susan! 

  • Hortense
    Hortense Member Posts: 718
    edited January 2013

    Sun hat  YES! Not just for your hair but for your skin's sake. I wore a light sun hat last summer during chemo and was fine. Just use one with a smooth inside band so it doesn't catch on your hair.

  • Kristina284
    Kristina284 Member Posts: 1
    edited January 2013

    Hi, everyone's comments seem to be from 2009 - what am doing wrong? Kristina

  • sciencegal
    sciencegal Member Posts: 546
    edited January 2013

    My oncologist said that a large portion of chemo brain is due to the abrupt changes to our lives and schedules, the shock of the diagnosis and all of the new knowledge we have to assimilate in such a short time. The "jars on the shelf" theory- start pushing a bunch of jars onto one side and some start falling off at the other end once the shelf (our brain) gets full. It CAN be overwhelming as we all know.
    She thinks that only a minor amount is physiological from the chemo. This may be true because those close to us who are trying to keep up with all of our appointments and new info can get chemo brain too!

  • 301724
    301724 Member Posts: 185
    edited January 2013

    Hi Kristina - seems like your computer is sending you to page 1 of the thread - which was indeed, 2009. See if this happens on other discussion threads or if it's just this one. When in doubt, shut down your computer, reboot, and try again.

  • Loafer
    Loafer Member Posts: 56
    edited January 2013

    Hi all - Finished last chemo treatment on Friday 4x t&c. At what point does hair stop shedding now entirely? I haven't lost much between 3 and 4 except when i wash my hair. My serious hair loss was at 2. My onc, who fully endorses the cold cap treatment, suggested a few extensions to cover bald patches while hair grows in. I already have an inch of grey which has been growing throughout treatment, and confirms cold caps work. I am pleased that i have hair at the end!

  • sciencegal
    sciencegal Member Posts: 546
    edited January 2013

    Hi Loafer- congrats on being done!

    I saw something called Toppik on TV, it is colored microfibers that spray onto the thin patches to cover bare spots on the scalp, it might work and pull less on the existing hair than extensions would. Has anyone tried it?

  • 301724
    301724 Member Posts: 185
    edited January 2013

    Congrats, Loafer! From previous readings of the thread, it seems that PFC shedding can last up to about 18 weeks. There seems to be a lot of variance from person to person.

    I found a recommendation earlier in the thread for Joan Rivers Great Hair Day Fill-in Powder. I got some to use where I got frostbite from cycle 1. New hair is growing in (4+ weeks PFC) but this covers the pink of my scalp. I can comb over the area and it looks fine. Wouldn't work for a large area but works if you have hair to comb over the thin patch.

  • Dancingthruit
    Dancingthruit Member Posts: 9
    edited January 2013

    Good Evening Ladies!



    Thank you all for your wonderful, insightful posts! It is great to read them and have your worries assured. I am in between my 2nd and 3rd treatments as well and have been seeing quite a bit of shedding. I can't seem to stop touching my hair, but I know I need to! :) I do have a question for anyone that performed a lot of physical activity while in the process of using the cold caps. I am a dance teacher and have anywhere from 5-7 hours of physical activity 4 days a week. I have been taking it easy, but I still have nights I get pretty sweaty. I have been washing my hair every 3-4 days. but would it be best to rinse it with cold water on days I sweat? I just want to do whatever is best for my hair, so just wondering if anyone has any suggestions? Thank you very much! Hope the New Year has started off great for all of you!

  • Laura5
    Laura5 Member Posts: 419
    edited January 2013

    Dancingthruit, You might PM makingway and ask about rinsing.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2013

    Congrats Loafer on being done!  It took about 4 months PFC for my shedding to slow down to a normal, pre-chemo level. 

    Hi dancingthruit from another one who loves to dance!  I'm just an amateur, though - take a local dance exercise class called Dance Trance.

    I don't have much advice on the hair washing b/c I only washed every 3 days.  I was too sick to keep up my dancing during chemo.  There is another gal on here (sebm9) who swam every day through chemo, and rinsed her hair every day.  You may want to PM her.  She has an extensive write up she can offer as well.  

  • Loafer
    Loafer Member Posts: 56
    edited January 2013

    Thanks ladies!!



    Thanks 301724 and science gal for the great suggestions! I have been using a color stick which does a great job of coloring grey, but flattens hair on top and exposes the bald spots. I think I'll research your two suggestions to see which is best for me. I have changed my part from the side to middle which has helped a little. Hoping this is all I need to get through. The thought of putting additional stress on my hair with an extension makes me nervous. Of course my Onc is pulling at it and saying its just fine - LOL.



    You girls have been an amazing amount of support! Appreciate all of your advice and experience.

  • Skibunny
    Skibunny Member Posts: 54
    edited January 2013

    Hi! I just wanted to pop in and give some hope to coldcappers too. I had 8 sessions of dose dense AC-T and although I lost quite alot of hair, I still hung onto enough for a hair do and all of the bald patches/thin bits filled in super quickly.

    I've shared my experience with some photos and tips here, if anyone is interested:

    http://chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping/

    I really hope it works for you too.

    X

  • ali68
    ali68 Member Posts: 644
    edited January 2013

    Hi skibunny, i had cold cap and my patches are no longer. I have ordered "fast" shampoo from amazon. It has good reports on hair growth and some hospitals in England have given free samples. I have shoulder length hair but the crown needs to grow.

  • Loafer
    Loafer Member Posts: 56
    edited January 2013

    Ski bunny - your blog is one of the best i've seen. It's fun, informative and outstanding! Can't wait for you to add to it! i have also gained 10 pounds on chemo. Never expected this! Which nixion shampoo did you use for regrowth?

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2013

    Nice job on the blog skibunny! 

  • sebm9
    sebm9 Member Posts: 488
    edited January 2013

    Dancingthruit: You absolutely can rinse in cold water. In fact, the additional cold is good. I swam every day, and rinsed thoroughly before I swam and put on my cap, and thoroughly after the swim. I washed 1x/week (I had no scalp issues, probably because I rinsed daily, but now they allow washing 2x/week. I think if I had to do this again, I would still only wash 1x/week because I lost more hair doing that.) The exercise is an important tool in helping detox the chemo from your system, keeping your normal routine as much as you can, and also in oxygenating your red blood cells, so you won't be as tired as infusions continue. You want to detox to help with your liver function, which is directly tied to your hair retention and ability to handle the additional chemos.

    You can also use a cap straight from the freezer to cool your head inbetween infusions -- this also helps stimulate hair growth.

    Hope this helps!

    Susan

  • hbb
    hbb Member Posts: 84
    edited January 2013

    Hello everyone. It's been while since I've checked in. I had my final treatment of TCH on August 10th followed by 28rads and now just Herceptin.

    I kept all of my hair. The worst shedding was post tx1 (all the hair in my sideburns fell out) and pfc. I continued heavy shedding for 14weeks then one day it just stopped.

    I rinsed in cold every day. And in the sun I would wear bandannas that i soaked then froze. I would spray them down with ice water once they melted to keep them cold. I also wore a cap from the freezer for 20-30mins any time my head got sweaty. I practically lived in those bandanas since I have two young kids and it was summer.

    My helpers recently confessed they froze the caps to -39. Brrr!!!!!

    I used panty liners over my ears and on my forehead. Sounds crazy but worked great!

    I also used latisse starting the last month and without it I believe I would have lost all my eyebrows and eyelashes. They thinned considerably but grew back immediately.

    To those of you just starting or still enduring the fun... stay strong. It works.

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    Thanks to everyone on this board for sharing your tips and for the positive encouragement - I am starting chemo with the caps on Thursday and look forward to posting mhy own succes story as I go along.  I was wondering if it was okay to get your hair wet on nonwashing days and it sounds like that's fine as long as the water is cold...if you don't want to wet it, did you use a shower cap?  Also appreciated the tips about exercisse, which I plan to continue doing but was worried about sweating...sounds like maybe a cold rinse before or after or maybe just one of the cold caps after???  It's a cold time of year here now so I'm not sweating all that much, which is nice.

    Thanks, everyone!

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    i just got nixed about the Latisse by my MO...any other alternatives I can try to save my brows?  On the plus side, he did OK the Biotin and silica and said I can use the Latisse after chemo.  Anyone have experience with anything OTC?

  • 301724
    301724 Member Posts: 185
    edited January 2013

    Hope, what chemo regimen will you be on? I was on cytoxan/taxotere X 4 and did not lose brows or lashes (am now 5 weeks PFC and all still holding on....) I got Latisse and did not use it.

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    Thanks 301724 - I hope they keep holding on for you!  I am getting the same regimen so maybe I will be okay...I ordered something called 'Wonderbrow' that is a filler with tiny fibers so maybe if I just thin I'll be okay.  Did anyone else have the same???

  • michellej1980
    michellej1980 Member Posts: 51
    edited January 2013

    My brows and lashes have thinned but they're still here after 3/6 treatments.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2013

    I had TCH (taxotere, carboplatin, herceptin) - lost the outer halves of my brows but could fill them in with a pencil easily - they grew back then the inner part of my brows thinned - again - not very noticeable...and they grew back within just a week or two.  (Did not lose them until AFTER chemo.)

    My lashes thinned but never to anything noticeable.  I didn't wear mascara during chemo...just to be gentle with them.  

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    Quick question ladies...on days when you don't wash hair but do shower any tips? I.e. shower cap??? Just don't want to mess anything up. Also for working out, I wonder about doing a cold rinse first and then exercising? Sounds like its more the shampooing and rubbing, etc. more than hair getting wet??? Thanks!

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