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Cold Caps Users Past and Present, to Save Hair

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Comments

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

    Hi All: Yes, White side out!

    Good Night.

    Nancy

  • arlenea
    arlenea Member Posts: 1,150
    edited July 2011

    Ladies:  I understand you can lose your lashes and brows after chemo is finished.  How far out does this happen?  I haven't lost mine and wondering now at 30 days PFC is (edit if) I could still lose them.

    Thank you!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited July 2011

    Hi Arlene - my lashes really fell out about week 6...I am 10 weeks PFC and have a whole bunch of cute little eyelashes.  With the help of latisse...

  • arlenea
    arlenea Member Posts: 1,150
    edited July 2011

    Thanks Annie so I could still lose them.  Darn, but I was prepared for the loss.  Almost at 6 weeks now.  I'm using my nails as a gauge for my hair.  I figure once they stop peeling that my hair might stop shedding.  Just my thought process and probably not much validity.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited July 2011

    My nails look more and  more normal...though, like others, as I cut them I am seeing small gaps where the chemo lines were.  Some lifting that is minor...

    The fun never ends!

    Tomorrow is my big exchange day!  I am nervous.  I can not wait to wash my hair tomorrow before the surgery.  We had no power all weekend and had to wash my hair in the lake. So, I am at work today - four days of no hair washing with "lake hair".  Ready for a new new normal to begin soon - new boobs and hair that I can wash ANY DAMN DAY I WANT TO!  :)  Have to laugh....or I think I will cry.  Though I have to say my sweet little eyelashes look just adorable today.  :)

  • LivCar
    LivCar Member Posts: 153
    edited July 2011

    dexxy - if you're at with the dignipcap group at your clinic, you should mention that the caps need to be on longer than an hour. I spoke with a breast cancer biologist and she agrees with the PCC protocol of 4 hours.  At that point, it's not the temperature, it's the half life of the drugs and what your hair is still being subjected to hours after infusion.  They won't have as much success with only one hour.

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Arlene and Annie:  When did your nails start peeling or not looking normal?  Did you ice during tx?

    I just finished TC number 3 yesterday and my nails still look normal.  I have been wearing nail hardener every day and keeping them well groomed.  They actually look better now than normal as I no longer pick the cuticles.  I have been applying coconut oil to them daily to keep the cuticles soft.

    I did noticed they almost come to a complete stop growing for 10 days after tx, then they grow like mad before next tx. And I have not noticed those lines in them either.

    In terms of lashes, how sad that they fall out 6 weeks after.  I started latisse about mid way through 1st tx.  I have developed holes in my brows and notice a few hairs fall out daily.  My lashes are looking great and growing longer already.  It is going to be sad to see them fall. :(

    Its one thing dealing with SEs from chemo, another thing dealing with losing our sense of self and looks.  Not that this defines who we are, but does affect how we feel about ourselves.

  • mdg
    mdg Member Posts: 1,468
    edited July 2011

    As far as lashes go...I am 8 weeks out and have lost most of the bottom one's in the last 2 weeks....the top is about 75% still there but thin.....I keep hoping they hold on.  I have been using latisse the last few weeks and don't see anything growing.......

    Brows are back though.  Mine thinned a lot but I still had some.  Now they are growing.  I can tell you I just left them along through chemo to try and keep them.  I just blotted gently with a towel after a shower but did not really wash them/mess with them.  I did continue to pencil them in to fill in where needed.  I never lost 100% of them.  No one even noticed when I mentioned it when they were penciled in....

    Nails for me were fine.  I did ice during taxotere.  My nails are growing great...not lines/ridges.  I used salon quality nail polish through chemo in a french manicure.  My med onc thought I got fake nails because they continued to grow through chemo.....they grew a lot post chemo really fast. 

  • arlenea
    arlenea Member Posts: 1,150
    edited July 2011

    Hi ladies:

    I iced during taxotere too and think that is why I haven't lost any nails.  The peeling is minimal and restricted to just a few nails..  My nails also grew like crazy during chemo as has my hair.  Speaking of hair, I just washed and didn't lose much but the combing prior to washing....yikes!  Hair is getting darn thin but still looks decent as long as I have it pulled back.

    Debrox:  I actually think my peeling has been there since TX#1 and I too kept polish on my nails which I think helped too.

    Hang in there girls!

    Arlene

  • dexxy
    dexxy Member Posts: 88
    edited July 2011

    ArleneA - did you only ice dureing taxotere or as well as the cytoxan?

    trying to get everything ready for tomorrow, its treatment 1 of 4, with the DigniCap,wish me luck

    LivCar-I know they are suppose to be following the protocol from a recent Study in Japan that was super successful I'll just have to wait and see tomorrow

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Hey Dexxy:

    I scoured these threads for many hours before starting treatment and found that women ice their fingers and toes only during taxotere, some apply dark polish as well as there is some link to light sensitivity, nails and taxotere.  I do not think it is necessary during cytoxan and didnt find anyone who recommended icing during cytoxan.  Plus it will save you an hour of incredible discomfort.  The toes are the worst - at least for me.  I was ready to high kick the bags of peas off once the taxotere was finished.  It took another hour for my poor toes to defrost :)

    Yesterday I actually took 2 vicodin spread an hour apart to alleviate some of the discomfort and you know what - it helped!  For me icing the toes is far worse than the cold caps! 

    Hopefully you will not find the DigniCaps as uncomfortable as they start at warmer temp and consistently remain at that temp for the duration of your treatment.

    I tested mine yesterday, they start out at varying temps across the cap, some spots at -32, some at -28, they warm up to between -5 and zero when removed.  Then we start all over again for approximately 16 changes.  It is a hard day.

    Good luck tomorrow.  You will do great.  We are all rooting for you!!! 

  • arlenea
    arlenea Member Posts: 1,150
    edited July 2011

    Dexxy:  Yes, I only iced during the taxotere (I was on carboplatin which my doctor says is much harsher/stronger than cytoxen but it wasn't recommened to ice for it, just the NASTY taxotere which is the one that seems to cause all the SE's.

    You'll do just fine.

    Arlene

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited July 2011

    Hi ladies; I had my port inserted today ready for chemo 1 tomorrow. I have my PCCs ready too:-) I have a question on the thermometer; my hubby went to Sears and could nto find an Infrared thermo, he found a thermometer that goes down to -40 degrees centigrade, can this work? Please advise.

    Thank you 

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Snoopy:  How does it work? 

    The infared thermometer look like a laser gun that gives you an instant read out of temp by aiming and pressing a button.  I am not sure what type of thermometer your husband purchased and how it works.  Please explain.

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited July 2011

    Hi DebRox - he has not purchased it yet, jsut wnated to make sure that it is okay before he buys it, my chemo us at noon tomorrow so i ahve a little bit of time. Where did you buy your infrared thermo?

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Hi Snoopy:  I purchased mine on Amazon.  I would suggest you look online for different makes and then phone either hardware stores or other Sears locations.  I am not sure what your husband is looking at but it needs to be a gun type thermometer.

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited July 2011

    Okay thanks DebRox

  • keeppositive
    keeppositive Member Posts: 181
    edited July 2011

    Hi All:

    The cheapest and best infrared thermometer is on Amazon.com Too late to order for tomorrow, but get one at Sears, order the one on Amazon and when it arrives return the one to Sears. (Keep the receipt). The one from Amazon works great and is ablut half the price. 40 or 45 vs 75 or 90.

    I iced fingers and toes during Taxotere and it was far worse than the caps!! My nails are still peeling, but haven't been keeping up with the hardener like I did during chemo. I will do it again starting tonight!  My lashes and brows thinned, but didn't fall completely out yet.I am 101/2 weeks past PFC. I used generic Latisse throughout chemo and a month or so past. I have stopped, but haven't lost all yet. I didn't notice my lashes thicken or get longer either, but maybe they held on instead.

    Keep Positve!! Laugh! Tell jokes!! and Smile alot.

    Nancy 

  • DebRox
    DebRox Member Posts: 141
    edited July 2011

    Snoopy:  I just checked Home Depot and they sell infared thermometers.  Phone first to make sure they have them in stock.

  • BHodges
    BHodges Member Posts: 10
    edited July 2011

    I'll be thinking about you tomorrow Snoopy & Dexxy, you girls are going to do great! The time goes by so quickly with the caps.......

    Arlene- I am 6 weeks PFC and still have 75% of my lashes- I used Latisse starting at my 2nd round of T/C. I have a big hole in both of my eyebrows that is starting to fill in now (a little pencil REALLY helps :)  

     Hope you girls had a great Holiday! 

  • Ang7
    Ang7 Member Posts: 568
    edited July 2011

    Hi all~

    I used the black nail polish on my nails during TCH and have had no nail trouble.  I would take the polish off and then reapply the day before chemo...

    This was suggested by a friend who had been through TCH.

  • hadle
    hadle Member Posts: 10
    edited July 2011

    yes has anybody tried rogaine with cold caps?  Also went to a dermatologist for fkaking itching, he prescribed diprosone, a corticosteroid. I want to try it for this itching but am reluctant to while using cold ca ps.  Anybody try this one?  I usually only wash it every 4 -5 days.  Washing helped with the flaking, but still itching.  Thanks for info.

  • hadle
    hadle Member Posts: 10
    edited July 2011

    Find latisse on lashes and brows a big help.  Have lost about half of upper, most of lower lashes and some eyebrows, they have holes.  However, with mascara the remaining lashes look like more than they really are because latisse has lengthened them.  Started latisee before treatment number 1, of 4 TC.  Hope that helps.

  • hadle
    hadle Member Posts: 10
    edited July 2011

    My nails are pretty normal.  They still grow.  I have been taking 5000 mcg of biotin for several  years so maybe that helps.  My nails are not great to start wtih but I haven't noticed much change while on chemo.

  • brca1babe
    brca1babe Member Posts: 38
    edited July 2011

    cold cappers,

    I had my first AC tx one week go with the caps.  The caps went well (AC is a bit harder to say that about).  about 5 days after I started getting crusting at the top of my head.  no bleeding but areas of crusty buildup, a bit of yellow/brown sandy stuff.  a bit itchy.  not really red unless I scratch the area.  I haven't started losing hair yet (mild shedding).  the area is where the caps were the coldest, so I am wondering is it from the cold (frostbite?) or is is from chemo?

    does anyone know if people who don't use the cold caps at all get the crusting or flakes some have talked about from chemo alone?

    I am trying to be good an not scratch but I wonder if all that build up is just smothering my hair follicles.  hard not to scratch!  ugh!

  • hadle
    hadle Member Posts: 10
    edited July 2011

    I am so sorry and hope that by now your hair has started to come back. Ii had a lot of big flakes after # 2 (4 rounds of T/C) and was freaking out.  All the flaking seemed to be coming from one small spot on the top of my head where the cap felt much colder. It did eventualy stop and I dont notice hair loss.  Called Frank at PCC who advised using a piece of silk on the top for treatment #3  and raising the temp from -32 to -29.  Sitll felt cold on top.  After treatment #3 there was some flaking but mostly itching.  Washing helped with both.  It has been 10 days since #3.  Don't know what to do for last treatment.  Maybe use thcker silk?  I would call Frank if I were you.  I'm so sorry.  I

  • sebm9
    sebm9 Member Posts: 488
    edited July 2011

    Hola,

    An important technical note about the infrared thermometers:  hold the thermometer close to the cap surface while taking the temp, to get the most accurate reading. The infrared thermometers take a general temp of the surface area, and if you hold it too far away, you'll get an inaccurate temp because the thermometer isn't just reading where the little red light is -- it's also reading the table surface, etc. So make sure to keep it close to the cap surface.

    Just a little advice passed on from my scientist husband, who works with the infrared and with dry ice in his day job.

    Nails: I iced during taxotere and cytoxan, both. It was definitely the coldest part of the day -- the peas and ice packs don't freeze your nerve endings the way the cold caps do, so you feel the cold more even though it's technically warmer! During my second TX I used wine chillers on my toes and hands, and had an awful burning feeling for 2 days afterwards, kept me awake for 2 days and I was in pain. No frostbite, but very strong neuropathy. My acupuncturist knocked the neuropathy out for me. I didn't lose my nails, but they were very chippy until about 8 weeks ago (i.e. for almost a year PFC). I had to file them every day because they chipped and peeled so easily. I didn't take biotin during TX and wish I had, perhaps it would have made a difference. (I take it now, maybe why the chipping/peeling has stopped.)

    Good luck to everyone about to begin! 

    Susan 

  • Snoopy73
    Snoopy73 Member Posts: 118
    edited July 2011

    Quick question, how long before starting tje cold caps therapy do I take tylenol/pain killer? Am on my way to the hosp now. Thanx

  • mdg
    mdg Member Posts: 1,468
    edited July 2011

    I took the ativan when I left the house.  I had about a 25 min drive and then saw the dr after blood draws  before starting chemo......hope that helps. 

  • LivCar
    LivCar Member Posts: 153
    edited July 2011

    Brca1babe - i had the scalp problem too ... it just went away.  I was told it was the new washing schedule.  I did my best to leave it alone and it slowly was gone.

    As for Ativan - i was taking that for my first few treatments and i found it got me 'down'.  Made me whiney and irritated.  I switched to tylenol 30mins before and feel MUCH better. 

    Good luck gang!!

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