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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited May 2014

    Fingers and toes crossed!   Day 13 and body hair is starting to fall off.  Treatment # 2 on Thursday.  Wonder if my heart can take the stress I expect Ito feel over next week.

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


    I was wondering how you are doing Kazzy!  Glad you checked in.  Crossing fingers for you....hoping all goes well.

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited May 2014

    Thanks mdg.  Ii've done very well with most SEs but honestly this was the one of most concern.  I have had some strange sensations on my scalp so I am more than a bit fearful told cap therapy may not be successful. I should know by next weekend I suppose.

    Did you find subsequent treatments more difficult to manage or were they on par with the first?

    Thanks for the support.  Regardless of how this project turns out for me, I am a huge proponent of the therapy and very glad I am making the attempt.

  • m1970
    m1970 Member Posts: 261
    edited May 2014

    So happy to see so many success stories on this thread.  I have not checked in a while.

    I'm 29 weeks PFC (7+ months).  No shedding at all now.  I use blow dryer and irons to stlye my hair, with no ill effects.  I do wash my hair every other day rather than daily and I think I will continue that indefinitely.  I also continue to use DermOrganics, but I am frustrated that the pumps seem not to work on about half the bottles.  (Anyone else have this problem?)

    I am getting my first full hair color tomorrow.  I have not allowed peroxide before this.  I'm tired of these stubborn grays that keep fading through.  I'm also thinking about getting it cut shorter because I notice the thinness the most on the ends.

    I've had brow envy since I lost my brows. They grew back, but I've realized they are not as full as they were before menopause.  They look fine up close, but from 5 feet away the tails lack definition.  I got them waxed for the first time ever and they look better and now have a defined shape so I know where to put the brow powder.  FYI the castor oil didn't prevent me from loosing my brows (used religiously for 8 months) and didn't seem to help it grow faster.

    Warrior - I am so sorry to hear about your surgery complications.  Love the doll.

  • m1970
    m1970 Member Posts: 261
    edited May 2014

    FYI, I got a prompt response from DermOrganics on the pump issue which solved my problem.  Sharing this in case anyone else has the same problem:

    "We had been using the same pump from the same maker for many years without problems. All of a sudden and without warning we started getting a lot of  complaints like yours. We discovered that the company which made the pumps for some reason changed the design to include a locking system that is hard to disengage.  We were very upset because by the time we discovered it we had already sold many many bottles, all over the world!  We got A LOT of complaints as you can imagine.

    We immediately secured another pump, and all the products we are shipping over the last few months have this new, simple to twist open pumps. Turn it counter-clockwise.

    If we can offer a suggestion that might help open them: If you notice the pumps are designed in 3 parts - the pump orifice on top, a little ring in the center, and the base that screws to the neck of the bottle.  With one hand (or, a pair of pliers or a nutcracker) hold the center ring perfectly still while twisting the top pump counter-clockwise. It should spring right open after a few turns."

  • FL_sunshine
    FL_sunshine Member Posts: 42
    edited May 2014


    Hi everyone-

    In regards to shampoos to use.....  I have a few already at home already, but I'm not sure specifically what I should be looking for as far as ingredients. 
    What is important to stay away from?  Parabins?  Sulfate?  Both? 
    I already have Biolage by Matrix (hydrating shampoo) and some stuff from Aveda as well as some other sulfate-free (color safe shampoo).  I see a lot of suggestions on shampoo brands but I'm not sure exactly what I should be looking for as far as ingredients.  Thank you! 

  • FL_sunshine
    FL_sunshine Member Posts: 42
    edited May 2014


    Also, what is the purpose of the infrared thermometers when using cold caps?  Obviously to check the temperature, but what exactly are you supoosed to do if the temp is not where it should be?  I am assuming once you are at the treatment center with your 2 huge coolers and 80 lbs of dry ice, not much can be done at that point to change the temperature of anything.  Can someone jump in here and explain the use of these thermometers?  Thank you  =)

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited May 2014

    m1970 - A nutcracker?  Baaahahaaaa!  I just ripped the pump off.

    Sunshine - The instructions explain how to check the temp. of the caps upon arrival to see how long it takes to bring them to the proper temp. with kneading if too cold.  If too warm, PCC doesn't recommend this but I know folks have placed the caps directly on the ice and they chill very fast at that point.  Do not assume the caps will be a uniform temp.  Some will be warmer or cooler than others.  

  • kilinki
    kilinki Member Posts: 7
    edited May 2014

    Hi Ladies,

    I'm finally over the emotions of last week and able to report back on my "situation".

    OneTexasDay, thank-you so much for the concern.  I guess I'm doing ok.  One day at a time...

    Kazzy, Hope and Hortense, we tried the corn starch but it just didn't work.  Maybe we weren't patient enough but I was really panicked.  We then used olive oil on my hair and that did the trick.  I still lost alot of hair (I think I only have about 30% left) and have major bald spots on the top and back of my head.  But at least I still have hair!  My hairline is still in tact and I am able to cover the bald spots with the remaining hair.  But I can only wear my hair up in a bun.  No more loose, flowing locks. 

    My hair is very dry after this whole ordeal.  I don't comb it anymore, just finger comb every few days.  My husband is now washing my hair for me while I sit in front of the handbasin as we don't have a handshower in our house.  How blessed am I to have such an understanding man in my life?!?!?!

    All I can do is hope the hair that is left survives the last 4 treatments.  When I run my fingers through it there is still quite a lot of hair that comes out, but I remain positive.  And really hope that by some miracle the hair will start growing while going through treatment.  Either that or I need a miracle when treatment is over for this hair to grow faster.  I guess I'll eventually get to a point where I will have to cut my hair short, but hopefully the bald spots will be covered by then.

    Unfortunately I can't find the hair fibre products in South Africa that some use to cover their bald spots!  How weird is that? I'll have to order it from Amazon or eBay and then hope they arrive really quickly.

    I had my 2nd TC infusion last week Thursday, the 1st one through my port.  I must admit that it was alot less stressful using the port than hunting for veins.

    My husband managed to find an infrared thermometer so we were able to ensure that the caps were a minimum of -20 degrees celsius before using them.  We also changed them every 20 minutes and I kept them on for 6 hours after my infusion.  Lets hope all of this saves the last remaining hairs on my head.

    At least I still have my eyebrows and eyelashes.  For now!  Really can't get too excited about anything at the moment cos it may be gone tomorrow...

    If this whole experience has taught me one thing its to ask for help.  Maybe if I'd originally asked my dear hubby to wash my hair I wouldn't have lost all of it last Monday and I'd have had more left.  Hindsight...

    Good-luck to everyone starting chemo and using the caps for the first time!

    x


  • schoolmom
    schoolmom Member Posts: 327
    edited May 2014

    Hello ladies.  Just checking in.  I got the results from my followup CT on the mass in my lung.  GREAT NEWS!  The Pet from Jan. showed node involvement in my chest and a 9 mm growth in my upper lung.  The new CT shows the node involvement is GONE!  The mass in the lung is now 4 mm and the onc. said is almost 'resolved'.   He believes it was an infection and is clearing up.  I can't tell you how I have worried over the last few months.  Just wanted you all to know that it is important to stick with it.......have a great weekend.  

  • 4sewwhat
    4sewwhat Member Posts: 1,895
    edited May 2014

    Great News SchoolMom!!  I am happy and relieved for you Happy

    Hang in there Kilinki!!

    Best of luck to you girls in the thick of things!!

    Have a great weekend girls!!

  • Daye
    Daye Member Posts: 63
    edited May 2014

    Yay schoolmom! I am so happy for your good news!!  I'm sure these last few months have been very hard just waiting.

    Kilinki- I am sorry you are having such a hard time.  Hopefully the shedding will slow down soon!  Hang in there!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited May 2014

    Schoolmom - We all know how much waiting for test results sucks and you really went through it.  What a relief.

    Kilinki - I do not intend to keep my hair long once I get enough regrowth.  I don't want to wait a couple of years with hair of differing lengths.  While I prefer longer hair, once I can cut it to a reasonable uniform length I will.  And then it will all grow back to normal.  Maybe we're on the same path?

    4sewwhat - You're always a joy!

  • hope49
    hope49 Member Posts: 239
    edited May 2014

    yay, schoolmom!!!  So happy to hear your great news.

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited May 2014

    m1970 - I forgot to mention, prior to BC, my brows looked thinner simply from age.  My hairstylist began dying my brows at the same time she did my hair.  This made a great difference as my brows then looked full and complete.  There are little hairs that don't show well but coloring can bring them out.  

  • Mmm2014
    Mmm2014 Member Posts: 10
    edited May 2014

    I am 7 weeks PFC. Can any of you lovely girls give me an idea how long I will keep shedding. So ready to start styling my hair :) at least the hair I have left. 

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited May 2014

    Mmm - Most people are reporting 3-4 months.  I cannot wait to actually brush and wash my hair.

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited May 2014

    WW - what I would do for a hot shower wash and scrub of my scalp!  And a color touch up!  

    I'm only 2 weeks into treatment and already I can see its a long road!  Maybe my Christmas present to myself!

  • Mmm2014
    Mmm2014 Member Posts: 10
    edited May 2014

    I didn't realize how thin my hair has gotten and the grey roots make it look thinner. Doesn't help I am trying cover a few bald spots too. But at least I still have hair. Much shorter but still there. 

  • wyomama
    wyomama Member Posts: 79
    edited May 2014

    mmm2014, did you count the perjeta as part of your 'chemo time'? I've heard the incidence of hair loss with perjeta is quite high. I'm on the same regiment as you were and end up wearing the caps nearly 11 hours.

    Glad to hear you have hair, even if it's thin hair with grown out roots! It gives me hope, I'm only 10 days after my 1st tx, and my hair is still quite normal, even if the rest of my body hates me.

  • jc254
    jc254 Member Posts: 332
    edited May 2014

    I'm feeling very refecltive this morning.  A year ago I was in the middle of chemo and last spring and summer are a bit of a blur. But...what a difference a year makes!  Today, I am thoroughly enjoying planting my garden and feel happy, healthy and hopeful.  My hair is back to its normal unruly, frizzy self and I am so grateful that it stayed on my head during chemo (well, most of it anyway).  I shed for 4 months PFC, colored at 3 months PFC and started washing with hot water and blow drying at 5 months.  I had the dreaded intermediate oncotype score and wavered on chemotherapy, but can now say I'm glad I did it. Hang in there ladies- life does get back to normal.  

  • Kazzy115
    Kazzy115 Member Posts: 69
    edited May 2014

    Just checking in to see how current cap users are faring.   I'm on DD ACT and day 20 total, just about 5 days out from treatment #2  I am definitely experiencing shedding on the head.  Not feeling confident  and hoping I don't hit point where thinning is so severe I  decide to throw in the "cap"!

    Hope others are faring well. Treatment is doable, though wore a cap the other night and there's definitely a physical reaction to putting it on my head. It brings on some nausea. 

  • Mmm2014
    Mmm2014 Member Posts: 10
    edited May 2014

    wyomamma- I didn't count the perjeta in my cap time. I still have hair so the perjeta didn't affect it much. I only wore caps till I was finished with the perjeta. That was my last drug for the day 

  • Daye
    Daye Member Posts: 63
    edited May 2014

    I hope all of the current cappers are doing well!

    Just wanted to give y'all an update on my hair... Saturday will be 4 months PFC and my hair is doing really well.  I got highlights a month ago and that didn't seem to cause any extra shedding or anything.  I think my hair has pretty much stopped shedding now! Still a few hairs everyday, but less than normal.  I have baby hairs everywhere!  They look pretty silly, but I am not complaining.  I went on the cruise just less than a month ago and while on the ship, I washed my hair in the shower with hot water and used a hair dryer six days in a row.  I also went snorkeling and my hair seemed just fine!  I am back to my normal hair routine of washing every other day and I also use a hair dryer on low pretty much every time.  It is so nice to be able to wash my hair in a hot shower!

  • Deepcreek08
    Deepcreek08 Member Posts: 18
    edited May 2014

    That is wonderful, Sweetmom- so happy things are resolving for you!

    Daye- thank you for the encouragement- I am only 3 weeks PFC and already wishing I could wash my hair in the shower, lol! Thank you for sharing- it helps to know that back to normal really is around the corner!

  • Hortense
    Hortense Member Posts: 718
    edited May 2014

    FLsunshine - Re: Shampoos  - I was advised to avoid all parabens and sulfates in shampoos and other products. I use DermOrganic products, but I am sure there are many other organics that would work as well. 

    It's been two years since I started chemo and used cold caps to save my hair. I feel so much better and stronger this year than last year. It really took a full year after chemo and radiation ended for me to feel myself again. My long hair is now amazingly thick, shiny and healthy. Someone who knew I had been through treatment stopped me in a garden center today to ask if it really was my own hair, or if I was wearing a wig. She was astonished when I gathered handfuls of it and tugged gently to show her that it was all mine. Thanks Penguin Cold Caps!

    I also swear by BioSil liquid which I take everyday for my hair.

  • ciaogina
    ciaogina Member Posts: 33
    edited May 2014

    Hi everyone! I am really struggling with deciding to use cold caps or not. I have very curly frizzy hair ( and greying) and I am wondering if I'd look better with a very nice wig/hats, etc.  I need to use special shampoos and conditioners and creams to make it look somewhat normal, and if I use the caps, I cannot use these. I'm 42 and if I do not dye my hair I will be grey. Summer is tough too with high humidity here in NJ. Just wondering how you all feel about your hair not looking like it normally does. In a lot of the success stories I've read all of the women have straight hair, not requiring the maintenance I do. I feel like I should just say forget it, it's not worth it if I'm not going to look myself anyway. I have two young daughters, summer is coming and I'm just not sure what to do. Any advice would be appreciated.  Thank you!!

  • jc254
    jc254 Member Posts: 332
    edited May 2014

    cioaganag, I'm from suburban Philadelphia and I know what you mean about the summer humidity.  My hair is naturally frizzy and I normally use a lot of product to get it to behave.   I used cold caps last spring and summer and I had a lot of bad hair days.   Without blow drying and hair tamer my hair didn't look its best, but I was so thankful that I still had hair.  For me, it was the right decision and I would absolutely do it again.  The gray can be managed for a while using colormark or similar products.  Think long term, because with cold caps, once you're finished chemo you don't have to wait months or years for your hair to grow back. 

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited May 2014

    cioaganag - I'm in NJ too and debated the caps because of the dreaded months between starting chemo and finally being able to cut and color my hair.  I chose the caps because I personally dreaded the thought of a wig and did not want the added trauma of seeing myself bald.  I am now 2 mos. PFC and glad I made the decision.  Yes, I have a lot of grey that I don't bother to cover up and yes, my hair needs a straightening iron terribly.  Most days I wear it up or in a pony tail.  The new growth is beginning to cover my scalp and hide the thinness.  As soon as the new growth reaches a reasonable length, I will have my hair cut to one length and go from there.  With that said, the caps are added stress during a difficult time.  They can also be a welcome distraction from the chemo itself.  Try to imagine how you will feel using and not using them and make the best decision for yourself that you can.  

    Hortense - I think it is the liquid silica that is making me a hairy little beast.  LOL  I have hair growing in places I never had hair before.  Another trip to my anti-aging doc for laser hair removal.   

  • ciaogina
    ciaogina Member Posts: 33
    edited May 2014

    jc254 & Warrior Woman-- thank you so much for responding. Can you tell me which caps you used? Penguin or chemocaps?

    I am getting TCH. Not sure what you had. In one sense I really don't want to deal with the caps but if I can keep most of my hair at the end of treatment that would be great. Thanks for the insight regarding the end of treatment. 

    Just can't believe we have to endure this. 

    Can you workout & sweat or is it strictly no heat to the head? Just too many things to consider.

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