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Cold Caps Users Past and Present, to Save Hair

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Comments

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited May 2012
    ali - I'm curious - is the cap rental covered by insurance in the UK?  Or do you have to pay out of pocket there as well like we do in the US?  (I hope this isn't too personal of a question.  Just ignore it if it is!)  
  • ali68
    ali68 Member Posts: 644
    edited May 2012

    Hi,no it's free on National Health Service, everyone who works in England has to pay tax. So our health service is free to everyone who lives and works here. So some people go private but we have an amazing system we are so very lucky. People say we pay tax but we have it good here, someone can come to the country and work and get free treatment.



    My onco said each chemo is worth £20,000 then you have everything else on top.

    Most people take out critical illness cover and life cover so when I got Cancer I got a pay out of £ 200,000 from critical illness cover.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited May 2012
    Thanks Ali - I appreciate learning a bit more about the UK health care system.   So wonderful cold caps are covered by your system! 
  • victorious2012
    victorious2012 Member Posts: 37
    edited May 2012

    Ladies, thank you for your comments.  It's good to know I'm not the only one that feels this way.  CCB2, I think you're right, people are just confused because it's not the "norm".  They have trouble processing it, especially those that have been through cancer and chemo before.  But the great thing is with these caps, we are creating a new norm where you don't have to be bald with chemo.  Love it!  And Dancetrancer and Ali, you are so right, we've invested so much in this effort (time, money, discomfort, worry & stress and logistics), that we have to rejoice in our success when/if it happens.  But ofcourse, we do it with sensitivity to others who choose a different path.

    TC, I can relate.  In fact, I've used the exact same words to describe the problem.  I think people get confused and think we're "OK" because we don't look sick.  In fact, I've heard my hubby and mom tell people that I'm doing fine and haven't had many issues throughout chemo.  Ofcourse I was thinking to myself, "oh really, is that right?".  And then we make it worse when we try to overcompensate on our "good" days.  But my advice is to communicate the details of what you're going through to those that you feel like sharing with.  And draw a line on how much you are willing to do.  Nothing is as important as our health, and those with high expectations will have to find a way to get over it.

  • makingway
    makingway Member Posts: 465
    edited May 2012

    I put this list of video links together for those considering using the cold caps. I will be posting it later on the website. Please visit the site for detailed instructions on hair care and tips while using the cold caps. http://www.penguincoldcap.net/

    Texas News April 2012: http://www.nbcdfw.com/news/local/Frozen-Follicles-148282195.html

    San Francisco, CA: http://abclocal.go.com/kgo/video?id=7828757&syndicate=syndicate§ion

    Tucson, AZ-April 2012 http://www.kvoa.com/news/tuscon-woman-turns-to-scalp-cooling-to-save-hair-during-chemotherapy/#!prettyPhoto/0/

    Beaumont, MI-November 2008: http://www2.wxyz.com/dpp/news/health/Cold-Cap-Therapy?CMP=201110_emailshare

    October 2010 GMA: http://abcnews.go.com/GMA/OnCall/video/cold-cap-save-hair-chemo-11991988


    News articles:

    Burbank CA-Peggy Hickey: http://www.dailynews.com/ci_19148455?fb_comment_id=fbc_10150345292363542_21455338_10150622889698542#f3d03d7670b745

    Oprah artcle: https://www.facebook.com/photo.php?fbid=289569601116543&set=a.203200589753445.49955.198233623583475&type=1&theater

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited May 2012

    Lisa,

    I went to an Aveda salon and used whatever they have there - recently - 2 weeks ago - I'm now 17 weeks PFC - I went to a "regular" salon and got "regular" hair color and highlights - no problems at all - but my shedding had stopped completely by that point.

    Good luck -

    Lucky

  • ckk
    ckk Member Posts: 79
    edited May 2012
    makingway, it would be helpful if you could repost your video links onto the Cold Cap Usage Tips forum for newbies looking for info.
  • ckk
    ckk Member Posts: 79
    edited May 2012

    Lucky, that's great to know! I was so anxious about dyeing my hair last week, but so far, so good. No unusual shedding.

    One good byproduct of all of this - I no longer need to wash my hair every day. I think that my hair has become used to the less frequent washing. 

  • makingway
    makingway Member Posts: 465
    edited May 2012

    Thanks ckk, I'll do that! I don't wash my hair as often as I use to either, and now I don't need to. It seems my hair has acclaimated to the less frequent shampooing. I was told that most of us wash our hair much too often. It's not suppose to have that 'squeaky clean' feeling. That's the result of stripping protective oils.

  • Leveled
    Leveled Member Posts: 57
    edited May 2012

    Thanks lucky, and thanks to all with success stories.......something to look forward to.



    Lisa

  • mdg
    mdg Member Posts: 1,468
    edited May 2012

    Leveled - how are you???  HOpe all is well.  I have been thinking about you.  I am crossing my fingers and cheering you on!  Hang in there.

  • Leveled
    Leveled Member Posts: 57
    edited May 2012

    Hey mdg, how are you? I am hanging in there last one this Thursday...........yeah!! Except its my 20th anniversary.......at least we will be together lol.



    The third one was a little rougher, I hope this last one is smooth sailing. Still have hair, it's grey and thin but it's mine. Hoping for minimal shedding pfc...........



    Did you by any chance take iron supplements afterwards? I heard it helps reduce shedding.



    Still have eyelashes and eyebrows.......the brows have thinned though......I hope they don't all exit afterwards.....



    Also trying to buy more organic items......tough to find some stuff........



    Hope all is well with you........





    Lisa

  • mdg
    mdg Member Posts: 1,468
    edited May 2012

    Lisa - glad you are in the home stretch with chemo!  Happy Anniversary!!!  My brows thinned a bit through chemo and after but never fully left.  My lashes went at 7 weeks PFC but grew back super fast.  Within 2 weeks I was wearing mascara again.  Don't be surprised if the lashes go after chemo...it happened to most of us.   I took iron, silica and biotin.  My hair growth now is wonderful and it is super healthy.  I have been using Naturtint hair color and it is much gentler on hair than regular colors and contains no parabens and minimal chemicals I am trying to avoid.  I recommend it when you can color again.  I am off to get another hair cut today!  My hair is growing like a weed.  I have been keeping it shorter but I have decided to grow it back long.  I am missing my long hair....

  • Hortense
    Hortense Member Posts: 718
    edited May 2012

    I'm just starting. I had my first T/C treatment nine days ago and am curiously awaiting developments. I was warned that I will see shedding by day 14 until about 18. I am supposing that some of the older hairs let go?

    I washed my hair on the fourth day as it was dreadfully oily. I am used to washing it every other day. It's awful again and I am trying to work myself up to trying another shampoo. I really wouldn't want anyone other than my DH to see me this way.

     Any tips on shampooing safely?

    I used lukewarm to cool water and DermOrganic shampoo, which was recommended by Cold Cap in its forums, and I found on Amazon. I was afraid to shampoo normally so carefully blotted the shampoo on after diluting it as recommended, gently mushed or patted my head a bit to raise a foam and rinsed it out before using DermOrganic conditioner and rinsing again. I was surprised my long hair got as clean as it did considering I didn't dare run my fingers along my scalp through my hair as I usually do. I gently blotted it dry, but didn't dare comb it as usual. I'm so afraid of pulling out hair. I let it air dry and as a result my usually straight hair was wavy. I looked so ratty. I guess I have to get braver.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited May 2012

    I was told to wash every 3rd day.  Even at that, my hair definitely gets yucko (but less so as chemo goes on, it is getting drier).  I wear a bandana loosely over my hair when I go out; the root area is the area that is oily, so I have to cover it up.

    I use as cold of water as I can stand (which is just a bit colder than lukewarm).  I found that using the sprayer at the kitchen sink is easier for me than leaning over the tub.  I also dilute my shampoo in a small dish.  I pour it over my head, and I do gently massage my scalp.  I had an issue earlier with getting what looked like dandruff, so I am more thorough now in making sure my scalp gets clean and is rinsed well.  I also use less shampoo than I had intially.  It appears to have resolved. 

    I don't use conditioner when I'm washing, but I use a spray leave-in conditioner to help with tangles when combing it out.  I initially tried combing it out after it had dried completely as I thought for sure I had less shedding.  However I tried it again with extra spray-in when wet, and I think the results are equivalent so I'm sticking with that plan.  It's faster and easier.  I'm definitely careful when I comb, though...holding those roots always and combing from the bottom up. 

    I'm still really careful but not that petrified feeling I first had when washing and combing my hair out.  I'm 17 days past my 2nd TCH and starting to think this little experiment may just work for me.  LOL  Tongue out

    Hope this helps.  I'm no expert, but this is how it's going for this cold cap newbie. Smile 

  • Hortense
    Hortense Member Posts: 718
    edited May 2012

    Thank you for replying. I really appreciate it. I have been planning all day to try again tomorrow. I like your soap dish idea. It makes sense. We have a hand held sprayer in the shower so I used that on its gentlest setting last time which was great for rinsing. I also tried waiting until almost dry to comb, but was not very successful and plan to try combing while soaking wet this time. I think you are right, wet may be better.

    I'm afraid to get in and massage my scalp as I usually do for fear of tearing out fragile hair, but based on your experience I may try a bit. I certainly understand that "petrified" feeling you mentioned. I am just nine days past my first T/C session.

  • Leveled
    Leveled Member Posts: 57
    edited May 2012

    Hi all,



    Had my last chemo today...yeah! They sayi should wash my hair on Sunday three days after, is there any benefit in waiting longer or do I need to get the chemo fuz out. I took off of work next week and was hoping to wash less frequently.



    As for the petrified feeling, I have to take a Zane's befor washing as I loose a lot hair.



    Lisa

  • sebm9
    sebm9 Member Posts: 488
    edited May 2012

    Lisa,

    Congrats on finishing. Wash your hair 3 days PFC. Your entire body is detoxing, including your scalp, and you want to keep your scalp clean. Continue to do gentle, cool washes once/week (or twice/week if you are brave) until the shedding stops, which will be a matter of weeks or months. If you are able to increase your iron intake, it will help slow the shedding. My PFC shedding lasted about 5 months (I was an early user, so didn't know this was relatively normal. I wish they'd discovered the iron connection back then! Still, I kept 90% of my hair).

    I never lost lashes PFC. My brows thinned throughout chemo, and about 4 weeks PFC pretty much disappeared but only for a week, they quickly grew back in -- all hair I lost quickly grew back in, and continues to grow nice and thick even two years out from chemo. I did not use Latisse.

    To anybody just starting, as always, please PM me your email and I'll send you my extensive writeup on my experience and methods, with lots of pointers on all of this.

    Cheers,

    Susan 

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited May 2012

    I asked Geralyn if there was any benefit to washing my hair less frequently.  She told me to wash every 3 days, that I need to keep my scalp clean.  So, that's what I'm doing.  I'm shedding, but I still have my hair, and the loss is not noticeable yet...hope it stays that way. 

    I'm anemic right now due to chemo, I'm sure that's not helping.  I've been eating much more red meat than ever in my life (I'm normally semi-vegetarian).   

  • Essex123
    Essex123 Member Posts: 8
    edited May 2012

    Congratulations!  I shed for five weeks post chemo and then one day it just stopped.  It was weird-It was not a gradual stop-it just all of a sudden stopped and I never shed again.  Someone else wrote that it stops as abruptly as it starts.

    I call Geralyn from Hope for Hair all the time. She is very informative.  

  • Leveled
    Leveled Member Posts: 57
    edited May 2012

    What about warring the caps in between, well now since I am done should I keep them for a few more weeks and wear them twice a week?



    Essex how did the henna work for you.



    I hope I stop shedding in 5 weeks.....that would be wonderful.



    This has been one scary process....only up from here......I hope.



    Thanks to you all.



    Lisa

  • ckk
    ckk Member Posts: 79
    edited May 2012

    Hi Ladies...checking in. I colored my hair 10 days ago (when I was 11 weeks PFC), and no shedding. It looks good! I feel like me again.

    I saw a girlfriend today that I had not seen in quite some time, and she complimented me on my wig, said that it looked just like my "real" hair. :-)) 

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited May 2012

    ckk, that is awesome...and FUNNY about your friend!  yahoo! 

  • Essex123
    Essex123 Member Posts: 8
    edited May 2012

    Lisa,

    I only wore the caps the two days after last chemo.

    The henna worked ok. I was so nervous when I was having it done. It covered the grays somewhat. Next time we are going to go with a darker color.  i did not have any shedding afterwards.  Salon ordered me this special brush, but I am still reluctant to use it. Even though I believe I survived the hair thing--I still wake up in the middle of the night touching my head to make sure it is still there. It is indeed a scary process. But, IT WORKS.

    When I was having radiation in Basking Ridge--the topic of the waiting room always was me.  The other women were shocked that I had T/C chemo and kept my hair.  None of them ever heard of the cold cap.  It made some angry and others cried that they did not know about it. So, Lisa--now that you and I are New Jersey success stories-we have to spread the word.  

  • TheLadyGrey
    TheLadyGrey Member Posts: 68
    edited May 2012

    I can't imagine how furious I would be if I had learned of the caps after chemo.  That's so sad.  

    I feel like an evangelical proselytizing -- I tell every woman I run into, right down to the pharmacist and dental hygenist.  I figure everyone will someday know someone with BC.  

    I am now 4 months PFC, taking iron and biosil, and the shedding is slowing a tad (started to say a hair -- har, har).  No one would ever know to look at me, although they might wonder at the mousy brown and grey roots, but I have lost a lot of hair -- lost little/none during chemo. I used to do three twists on the pony tail holder and now it is 5 or 6.  I can't imagine how strange it is going to look as the new hair grows in.  

    Toying with the idea of not going back to coloring to natural blond but I don't think I have quite enough grey hair yet, although I do have an interesting two inch grey streak.  I love grey hair.   I have two months, at least, to decide.   

  • ali68
    ali68 Member Posts: 644
    edited May 2012

    Had last chemo on 4 th may so day 14 and I've lost even more hair on top. Today has been very bad, before I had light covering and now I can see white skin. I'm so upset been through all this pain and it's not worked. I'm now thinking do I cut it all off as it will grow back very weird. I lost my lashes and brows after 2nd chemo and had very bad SE so i guess I've been very unlucky.



  • soccergirl
    soccergirl Member Posts: 190
    edited May 2012

    Ali- i did a big chop 2 months after chemo.  My hair was damaged and looked like sh**.   I am sorry you didn't experience more success. On another note, you have protected your follicles and will have quicker regrowth. I hated my hair for a few months and the whole toxic event was very unpleasant!

     What ever you decide, you will be ahead of the regrowth game moving forward.  Do what you need to feel better( cut or don't cut).  Eat well, keep moving, take vitamins and rest! I am 6.5 months post chemo, 4 months post radiation and still get Herceptin every 3 weeks.  It gets so much easier as the days, weeks and months past.  Your hair will fill in and you will detox the poison.

     There is a light. Chemo is cumalitive and the post chemo was more difficult for me.  I was depressed for 2ish months after I finished.  Howvever, the cloud lifted and I feel a great enthusiam for life.  I am sending you healing energy and hope your dark cloud is short lived!

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited May 2012

    Lisa,

    It took me about 15 weeks to stop shedding - but I didn't go bald - it's amazing how much hair you really have. I am finding that I really don't have to shampoo as much as I did before chemo - seems like the oil in my scalp and face has really dried up. I'm glad the color info I gave helped you - good luck with everything!

    Lucky

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited May 2012

    Ali,

    I'm so sorry that your experience hasn't been good. The best you can say about chemo is that it's behind you now. I didn't lose nearly as much hair as it sounds like you did - but what I had didn't have great texture. I had shortish hair before chemo - and I've gone even shorter PC - because the texture was just so bad,

    At least youre through the worst of it. Keep moving, eating right, get enough iron, take silica, biotin and you may want to try black currant seed oil - and your hair will grow back because you've protected the follicles.

    Good luck!

    Lucky

  • CousinItt
    CousinItt Member Posts: 11
    edited May 2012

    cck

    That's great!  Did you correct her?  I would've loved to see the look on her face.

    ali68

    I'm sorry things didn't go as well as you hoped.

       I'm 11 days post 1st(of 6) TCH and  so far so good hair-wise.  As to other SE, ugh.  I think it's worse if you've been annoyingly healthy all your life.  I had the first headache of my life last week and thought I was having a stroke.  How would I know?  It was my first ever.  Then I had another the next day and another.  Third time was the charm; I tried one of the cold bands on my forehead for 10 minutes and headache was gone and none since.  General aches and pains and don't feel like me at all.

       

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