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Cold Caps Users Past and Present, to Save Hair

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Comments

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi Arbella:

    I colored my hair on March 9th which was less than 2 weeks after my last chemo.  I used the no peroxide no ammonia color and it made my hair so soft and manageable.  I to was scared that I'd lose it all but I have actually lost less hair now that it's not dry and straw-like!

    Carol

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi mtri111:

    I wanted to thank you for suggesting the clip in hair extensions.  Although my hair is still present on my head it had gotten really thin...and I was used to thick hair.  I bought some human hair extensions at Sally Beauty Supply and they worked out perfectly!  I just use a couple of the extensions to give my hair some fullness and I must say after my hair stylist cut them they look like my own hair and they were the same color as my hair so no need to color.  I normally wouldn't wear extensions but I've got to say if your hair is really thin and you need some fullness to feel better these work.  Man...this cancer stuff gets expensive after a while just to make yourself look (or feel) human again.  I've spent tons of $$$ on water proof mascara, lash and brow stuff to make them grow, drops to stop the eye watering (which don't work), creams to improve my skin tone, stuff for my nails, and the list goes on and on!  Am I the only one that feels this way or am I just too vain for my own good??

  • mwalkercsr
    mwalkercsr Member Posts: 2
    edited March 2010
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    I read your reply to the cold cap and was wondering how can I get one?  My doctor said it was okay to us it, but she left it up to me to get one as their office does not promote them.  I like in Illinois about 30 miles from St. Louis.

    Thanks,

    mwalkercsr

  • mwalkercsr
    mwalkercsr Member Posts: 2
    edited March 2010
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    I am very interested in your caps.  Please email me or call me 618-667-6139 or mwalkercsr@yahoo.com  I live in Illinois, near the St. Louis side.

    Thank you,

    Mary Walker

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi Mary:

    You need to contact Frank at the Penguin Cold Caps site (http://www.msc-worldwide.com/).  This website will tell you all about the caps and Frank will be able to access your needs based on the type and frequency of your chemo regimen and the type of hair that you have (long, short, thick, etc).  Once you establish those necessities Frank will work out how many caps you will need and the payments with you.  Once you are good to go then I believe there are several of us on this site that will be happy to forward the caps to you.  They do work and I don't know what I would have done without them!!   If your chemo is coming up soon I would suggest that you contact Frank right away...he is hard to get in touch with and I would call and email him your information as soon as possible.  Good luck and let us know how you are doing.

    Carol

  • shadow2356
    shadow2356 Member Posts: 93
    edited March 2010
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    I have my last TCH treatment on Monday. I will be finished with my caps then. I have 14. I would be happy to send them to anyone who needs them. I can say they really do work!

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Yeah, shadow2356 -

    I will be thinking of you on Monday.  My last one is Thursday and I cannot wait...

  • shadow2356
    shadow2356 Member Posts: 93
    edited March 2010
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    Ang7- Can you believe we are almost finished?? It has been a tough road but thank God we are almost at the end! Yippie!!

     To everyone just starting, you can do it and will be at the end soon too!

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    YEAH!!! for Ang7 and shadow2536....I know how you guys feel.  I couldn't wait to be finished with the TC part.  I go tomorrow to continue on with the herceptin part for at least 18 more infusions but that should be a breeze compared to the entire regimen.  Tonight I told my BF how good it felt to not have to go buy dry ice and then pack the caps up in the cooler and then endure 2 hours of chemo and an additional 3 hours of wearing the caps!  I'm so glad you guys are almost done and that we all discovered the caps and kept our hair.  I'll be thinking of you both next week.

    Carol

  • mtri111
    mtri111 Member Posts: 67
    edited March 2010
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    Carol/NoSunshine, and everyone-

     I am glad to hear that the clip- in extensions have been a good solution for you, too. I like wearing my shoulder length hair down, and so three of the little things (sides and back) have been sufficient and seamless. A bonus.. my hair is highlighted and the blond extensions blend in and simulate a freshened look!  They also make for a thicker  pony tail or updo, so why not?

      Folks.. look on ebay for good deals on these!  Search for "human hair clip in extensions". A whole, huge set is about $52.

    I am done with treatments, too.. 6 cycles of taxotere/carbo... beat all side efffects (YES.. write me for tips!), and looked  normal, no downtime.  Not too shabby!

     Word must be spread.

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Hi and a very intense "right on" to everyone (I'm showing my age).

    I too am, joy of joys, looking at my last treatment [four rounds of Taxotere Cytoxan] on Thursday.  Only now am I really getting that I am not going to wake up one morning with my hair on my pillow, separate from my head.  This has been one of those experiences, like having sex for the first time - or a baby! - which it's hard to fathom until you  actually experience it.  I have so many different feelings and mixed emotions - a great feeling of happiness and relief that I kept my hair through chemo, and my privacy,  and the incredible frustration that thousands of women are losing their hair that don't have to while they  undergo chemo.  

    In a lighter vein, I want to confess that I have been using the hot setting on my hair dryer - after I had my second treatment - with no problems.  My hair will not lie down without the heat.  I use a little light hair gloss type spray before to moisturize my hair and I use a round brush too which actually pulls my hair  to straighten it.  And I've been trimming my bangs throughout.  We have to do whatever we're comfortable with and this was fine for me.  I think it is important however to wait until 25 days after your first treatment so you get through your initial fallout with as little stress to your hair as possible.  I also think the cold moisture from the caps is very drying so I use some spray shine product throughout, even the ones with alcohol in them but you can find some without as well.  I use Colormark for now to cover gray, with fine results, but I fully intend to start to use semi-permanent coloring 3 weeks after my last treatment.  I've also taken photos of myself (in a mirror) two weeks after each treatment to keep a record to prove how effective the cold caps are.  I can't figure out how to attach one though!

    Also, I hope you can open this link to an article my daughter sent me from the NY Times about L'Oreal's new ammonia-free coloring, which should be a good choice post treatment and soon on the market: "Taking on Hair Color's Bad Guy" - with INOA, a new permanent hair dye, L'Oréal Professionnel is hoping to make ammonia-free color mainstream- http://s.nyt.com/u/LRQ

    Last but not least, I'm laughing at myself because I thought I had an original idea when I came up with the idea of passing my caps on to my dear friend in Massachusetts, to save her some $$ on shipping, deposit etc., only to find when I got back to the website that everyone else was ahead of me.  Oh well, great minds think alike. 

    Good luck to all; and as my dear father used to say, "Carry on!"

  • cs718
    cs718 Member Posts: 34
    edited March 2010
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    Hi again to all;

    I am re-posting a slightly revised Questionnaire, subsequent to my post on February 12th.  I would appreciate any responses which you can take the time to send, whenever it's convenient, as my last effort wasn't too successful.  I strongly believe that understanding the lengths to which we've gone to keep our hair during treatment would demonstrate how important it is to get the word out on the possibilities, which, relatively speaking, remain pretty much unknown to cancer patients and their doctors.  Many thanks. 

    Cold cap user Questionnaire - for Claudia Silbert

    **You need not submit your name, since I am collecting data for information purposes only in anticipation of publicizing the need for the availability of cold caps.

    1. When (month and year) and how did you first learn about the cold cap treatment? - some detail please.

    2. What did you learn about how the cold cap system worked?

    3. Did you learn specifically about the Penguin Cold Cap treatment and/or did you learn about another system?

    4. Did you learn about the possibility of using cold caps before or after you were diagnosed with cancer?

    5. What was your oncologist's response when you asked about using the cold caps during treatment?

    6. Did your oncologist's office make any accommodation or impose any restrictions in connection with your use of the cold caps during treatement?

    7. What was the estimated cost for supplies: gloves, dry ice, coolers, blankets, thermometers, etc?

    8. What was the estimated cost of the cold caps, and for delivery and return through UPS or Fedex?

    9. Did you complete treatment using the cold caps?

    10. Describe your hair loss or thinning if any.

    11. Would you recommend using cold caps to others?

    12. Did other patients express an interest in using the cold caps after seeing you undergo treatment?

  • mtri1111
    mtri1111 Member Posts: 12
    edited March 2010
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    Hi all,

     Just a note that echoes NoSunshine's  hair coloring experience:

     I used Loving Care level 1 (lasts 6-12 shampoos) no ammonia/no peroxide formula, 11 days after final treatment.

     No problems,  and hair feels just fine. I had done this once before, in the midst of treatments, and no  ill effects then either.

     The question is when it is safe to move on to the more permanent, and hence more caustic formulations.  Giving hair a chance to thicken seems a  good idea, and I am thinking about 2 months post-chemo.

     Thoughts or experiences, anyone?

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hey mtri111:

    When I talked to Frank ~ a week ago he told me 2 months (counting from the time you would have had your next chemo...so that would be three weeks from my last chemo which was Feb. 25th ) because I had lost so much hair due to thinning during my last chemo treatment....so that sounds about right.  I don't know if I can wait 2 months to wash my hair daily (or maybe just ever other day) but I will wait the two months (or more) for a more permanent color.  I hate that the hair you lose grows back in grey/white....it's all under my normal colored hair (dark brown) and looks yucky!!  I bought more temporary color again today because I can't stand the white/grey hairs!!! 

    I also bought Nioxin Recharging complex http://www.nioxin.com/en/products/intensive-therapy/recharging-complex?xPos=54 which is a daily supplement to see if that will help with the thickening of my hair...I figure it can't hurt.

  • joansf
    joansf Member Posts: 55
    edited March 2010
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    Hi Ladies--I have been using the cold caps for Taxol Herceptin weekly for the past 10 weeks with 2 to go.  The results have been excellent! and I went ahead and had my roots touched up last week at my hair salon.  It took really nicely, I didn't ask for any particular product, but the stylist/colorist knows my situation and takes that into account.

    Dear Claudia--I will try to respond as best I can...

    1. Dec. 2009--I heard about the cold caps from the head of the breast health center at the medical center where I am being treated; also from the oncologist who is directing my chemo.

    2. Both docs told me I could use the cold caps to save my hair.  Initially, I thought/assumed it was a program through the hospital.  I was disappointed when I realized I was on my own.

    3. There were several patients at the medical center who'd already used the Penguin caps, so that was where I was directed.

    4. I learned about the cold caps after my diagnosis.  I had read about cold caps generically in the past, but I would not have pursued it had I not been encouraged to do so and had women nearby whom I could speak to directly about their experiences and for how-to's.

    5.  As I say, I used the caps at my onc's suggestion.  I did ask another doc with whom I had a second opinion if he had any objection to them, and he said no.  

    6. I received my chemo in an infusion center, not in a doctor's office.  I knew from the patients who had preceded me and also from a preliminary visit to the center, that the nurses had some issues/concerns about the logistics of cap use.  Specifically, I was told 1) that the coolers took up a lot of space and one would have to stay outside (we were all bringing 2);  2) that only one 'visitor' was allowed in the infusion area; and 3) that they would not time the infusion to suit the timing of the caps--i.e., wait until we had the caps on for 50 mins. before starting the infusion.

    In reality, here's what happened: Everyone was nice when we were nice to them.  We found a spot in the waiting area to keep the second cooler under an end table, and no one seemed to mind.  I always had two people with me, and although there was an occasional warning that one person might have to leave if it got crowded, that never happened.  Finally, the nurse would calculate what time she'd start the infusion, and we'd work backward calculating what time to put the first cap on--I was having Herceptin (which isn't toxic to the hair) first, then pre-meds, so that took about 45 mins. total anyway.

    7. I purchased 2 50 qt coolers and 2 digital thermometers on Amazon and gloves at Walgreen's; I have the dry ice delivered the night before and I pay a premium, but it's worth the convenience--it it's important to your study, and I can go back and calculate costs more precisely.

     8. Again, I would need to calculate.  I will have had the caps for 12 weeks of treatment, so probably 14 weeks total, and Frank rented me 14 caps.

    9.  I have completed 10 of 12 weekly treatments--and we are all organized to go for the last two!

    10.  I did not experience ANY hair loss.  

    11. I would absolutely recommend the cold caps but of course a prospective user needs to be aware of the effort and--albeit minor--discomfort involved.  

    12. Not really.  I spoke to one patient who said the doctor had discussed it with her as option, but she chose not to.  

    I hope this helps.  Please keep me posted on how you plan to publicize this.  Frank sent me the link to a recent news item featuring one of his patients--have you seen it?  She started a foundation to raise money to put a freezer in the hospital where she'd been treated.

    I would like to do something to get the word out on how successful this can be.  I feel so fortunate to be completing chemo without having lost my hair.

    Best, Joan 

      

  • geewhiz
    geewhiz Member Posts: 671
    edited March 2010
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    I finished six rounds of TCH today!! 

    I still have herceptin every three weeks until December, has anyone had issues with herceptin and hair loss? I don't need the caps do I? I saw a thread on here..hair doesn't thin, but doesn't seem to grow in as quickly while on it. Anyone have any experience? 

    I have 14 caps that I want OUT OUT OUT of my house!!!!!!!

    I had very light thinning, DH cannot even tell. The area around the ears is noticeable, but only if my hair is in a ponytail.

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Way to go geewhiz -

    That must be such a great feeling to be done.  I know what you mean about having the caps out of your house.  I think I have a love/hate relationship with them...

  • shadow2356
    shadow2356 Member Posts: 93
    edited March 2010
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    I finished my TCH on Monday. I too am ready to pass the caps on. They worked great for me and I had very little hair loss. For some reason I had extreme nausea during my last treatment and I took the last cap off about half an hour early. I couldn't take it anymore. I hope it doesn't matter at all.

    I am glad to see so many of us are finishing up. We all did it!!!! I will have herceptin until December but it should be a piece of cake compared to the chemo.

    If anyone is ready for caps I am in Long Island, NY. I have 14 and they are ready to roll.

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    That's great shadow2356 -

    My last one is tomorrow and I cannot wait to finish...

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited March 2010
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    Congratulations geewhiz and shadow2356.  Your almost there Ang7!!

    I have my last treatment of Taxol next Wednesday, 3/31 and I can't wait.  I know what you mean about getting them out of the house.  I will be happy to see them go but am so glad that I used them!  I have had quite a bit of thinning and have a couple bald spots on the top of my head, but I was on Adriamycin and Cytoxan and was told by alot of people that I would go completely bald with that stuff since it was so harsh.  Well so far so good with 7 out of the 8 treatments done. 

    Plus when I switched to Taxol the treatment is 3 hours long, with the premeds and having to wear the PCC's for 5, yes 5 hours, after treatment, I have them on for a total of 9 hours.  Yikes!!  But my doctor has been giving me Ativan so that seems to help alot.

    Take care everyone, Kelli 

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Kelli1970:  OMG...You poor thing!!  I couldn't imagine wearing those cold caps for 9 hours--you should win an award for wearing them the longest!!  I know you will definitely be glad to be finished with chemo.  It's almost been a month for me and I have an appointment with a surgeon next week...I wish I was finished with everything. 

    I also lost a lot of hair due to the thinning and am wearing those human hair clip in extensions.  I feel like a big fraud when I wear them but they do make me feel much better when I'm out of the house...now if I could just get my eyes to quit watering!  Take care and good luck with your last treatment.

    Carol

  • NoSunshine
    NoSunshine Member Posts: 66
    edited March 2010
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    Hi Everyone:

    Frank Fronda called me today and wanted me to tell everyone that when talking about the Penguin Cold Caps on this site could you please use his last name....it apparently ups his rating on Google searches.  Thanks!

  • bugsfire
    bugsfire Member Posts: 5
    edited March 2010
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    Hi All,

     My mom started on her first Chemo on the 11th of March 2010 and now her hair is begining to drop/ thin.  I just found out about these caps.  Would it be too late for her to start on it now? Her next treatment is on the 1st of April 2010.  She is on Taxotere, Cabloplatin and Herceptin.

    I am in Singapore and am not sure where I can get these caps.  totally non-existant over here.  Would be great if someone can help.

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Just finished my sixth and LAST TCH...

    Yeah!

    Are you dancing with me?

    I did find out that I have a hernia/abdomen bulge from the DIEP surgery (only 4-5% people get these they said.)

    I will have to have surgery to fix it in May.  They told me to decide if I want a nipple during that surgery.  Oh the decisions we have to make!

    Hope everyone is doing well...

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited March 2010
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    Congratulations Ang7!!  I am definitely doing the Happy Dance for you!!

     Sorry to hear about the additional surgery but just think you don't have to wear the Cold Caps again  :) 

  • geewhiz
    geewhiz Member Posts: 671
    edited March 2010
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    Yay Ang!!!!!

    There is light at the end of the tunnel!!!!!!!!

  • joansf
    joansf Member Posts: 55
    edited March 2010
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    Dear Bugsfire--It is urgent that you get in touch with Frank Fronda.  Google Penguin Colds Caps and his company will come up.  You can email, and also call the number on the website.  It is a California number--leave a message and he will call you back.  I have no idea if she can start the cold caps late, but if anyone can help her, Frank can.  He, by the way, is in England, so it is an international business.  Good luck to your Mom.  Best, Joan

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    I need your advice ladies,

    I was just prescribed Emend 80 mg. capsules for my nausea/vomiting.  You know I had my last chemo today and I was reading the Emend insert with possible side effects.  It states one possible side effect as hair loss.  Well, you know I did not go through the whole Cold Cap treatment to lose my hair to an anti-nausea medicine!  I will call my onc. in the morning before taking but I was wondering if any of you have taken this?

    Thanks.

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited March 2010
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    Ang7

    I took Emend (4 times) while on AC chemo so I do not know if I would lose my hair since I was using the Cold Caps.  Sorry not to be much help.

    Kelli

  • Ang7
    Ang7 Member Posts: 568
    edited March 2010
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    Thanks Kelli1970 -

    I spoke to my onc. and she said since I used the Cold Caps she does not think I should use the Emend.  Her pharmacist said there is a chance of hair loss with the Emend.  I think I will just do my Zofran, Compazine, Ativan regime and hope it helps with nausea.