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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Dgreg
    Dgreg Member Posts: 11
    edited April 2012

    Thank you for the compliments! I felt funny going on the news looking ridiculous but i felt so strong about helping someone else go thru this.



    My temp for thicke brown hair was -34. I did get a baldspot on top thou, so starting going to about -32 or -33.



    My sister knew the news host and she wanted to get the story out. I am so thankful i am finished and i have my hair. I am still shedding quite a bit.



  • Dgreg
    Dgreg Member Posts: 11
    edited April 2012

    Thank you Dancetrancer for reposting the link!

  • BouncingBetties
    BouncingBetties Member Posts: 50
    edited April 2012

    I didn't know the temp of my caps but they worked, so for those people who are worried that their caps are a degree or two warmer, I wouldn't be. I used a normal cooler and normal cold packs, no dry ice. Good luck to everyone!

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

    Hey dgreg...my local news actually shared a cold cap story the other day, but I missed it.  One of my friends told me about it, but I got the tv on too late.  I thought it was someone local and wanted to hook up with them, so I emailed the tv station to find out who it was....

    They said it was a story on a woman from Baylor-Sammons Cancer Center in Dallas...not someone local...LOL...I bet it was YOUR story being re-broadcast here!  Was it???  (I haven't gone back to look at the link and see if it said the hospital.)  How crazy cool is that?

    Well, one thing led to another, and they'd like to do a story on ME!  I told them I'd be willing to consider it, but I need to make sure my hair is saved first.  LOL!!!!  I will keep you all posted!

  • Laura5
    Laura5 Member Posts: 419
    edited April 2012

    That is awesome, Dance!    Not long after I started treatment I was asked to speak about my cap experience at a benefit for Rapunzel Project. I told them the same thing, I would love to spread the word but....let's wait until I am done with treatment.  I just didn't want to jinx it!

  • arlenea
    arlenea Member Posts: 1,150
    edited April 2012

    Hello NMoss:  Hi and nice to see you again.  Great post above.  Hope things work out well for you.  Take care!

    Arlene

  • Dgreg
    Dgreg Member Posts: 11
    edited April 2012

    Hi Dancetrancer,



    That is pretty cool! I know it will work for you. You are in my prayers!! It will be real cool for you to get thru this and your local news can do a story about it. I am just so thankful and grateful for the cold caps.

  • ali68
    ali68 Member Posts: 644
    edited April 2012

    What did i miss??

  • Dgreg
    Dgreg Member Posts: 11
    edited April 2012

    Oh sorry i didnt answer your question dancetrancer, it was me at the sammons cancer center in Dallas.



    Ali68, we are talking about a news story on cold caps. Dancertrncer posted the link earlier.

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

    Dgreg...did you know it was going to be broadcast around the country?  Pretty cool.  

  • lbrewer
    lbrewer Member Posts: 96
    edited April 2012

    i can't figure out how much dry ice to buy.  SOmeone told me 100 lbs.  Publix sells it in bags but I don't know how much is in a bag.

    HELP!!!

  • lbrewer
    lbrewer Member Posts: 96
    edited April 2012

    i can't figure out how much dry ice to buy.  SOmeone told me 100 lbs.  Publix sells it in bags but I don't know how much is in a bag.

    HELP!!!

  • lbrewer
    lbrewer Member Posts: 96
    edited April 2012

    has anyone had TAC and used the cold caps?

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

    lbrewer, you should have received instructions in an email from Geralyn.

    80# of dry ice -  8 - 10# blocks - the blocks of dry ice are size approx 12 inches square by about two inches thick. Each slab weighs about 10 lbs. 

    4 slabs each in 2 Igloo Cube coolers on wheels.

    Check to see if you have a dry ice distributor in your area.  If you do, you are lucky - much cheaper than Publix.

    Hope this helps.  

  • victorious2012
    victorious2012 Member Posts: 37
    edited April 2012

    lbrewer, remind me what TAC is again.  I had AC-T which is 4 ACs (Adriamycin and Cytoxin) and 4 Ts (Taxotere).  I believe some of the drugs may be the same ones in TAC.  I used cold caps.

  • Laura5
    Laura5 Member Posts: 419
    edited April 2012
    lbrewer,  Rapunzel Project will donate a freezer to your facility, providing your facility will accept it.  As far as purchasing dry ice, several ladies on this thread said they were given a discount when they explained what the ice was for.
  • Hortense
    Hortense Member Posts: 718
    edited April 2012

    Where can I buy Kenra hair products which are what is recommended by the Rapunzel Project. I know it's only sold in salons, but none sell it near me and the Kenra site search only shows a place 90 miles from me. Anyone know a salon willing to ship its products? I'm starting Cold Caps on May 8th and I understand I should be using the products, especially the shampoo well ahead of that date. I've just left a message at Kenra, but as it's a weekend I won't hear back until Monday.

     What other hair products have any of you used successfully that might be more widely available?  Thanks.

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited April 2012

    ibrewer - my husband always got about 100 lbs - I had to change caps for 8 hours each time - and that amount worked. I'm not sure how much is in a "bag" - can you call the service desk at Publix and ask them? they should have some sort of industrial scale in the store somewhere (produce or meat) where they coudl weight it for you -

    We went to a dry ice supplier in the St. Louis area - (Air Gas) I believe - and told them what we needed and they cut it up and loaded it in the coolers for us -

    Good luck - Lucky

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited April 2012

    ibrewer - you should be able to google "dry ice suppliers" in your city/area and find a supplier - and if you mention it's for breast cancer support - you may get  a discount - good luck - Lucky

  • Hortense
    Hortense Member Posts: 718
    edited April 2012

    I would also like any information about the best pillow caes to get as I know cotton ones can cause drag and breakage and satin ones do not as much. However, the satin pillow cases I felt at Bed Bath and Beyond were surprisingly coarse. The one on display was lovely, but what was actually in the package was a totally different fabric. The salespeople agreed with me that it was coarse.

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

    19 days post 1st chemo.  Last hair wash this morning before 2nd chemo Tuesday.  Definitely shedding more.  Hair was all over the sink.  I was expecting it, so I guess that helped some, but it still isn't easy to see.  Soooo....when do you start feeling more confident that this is actually going to work for you?  

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited April 2012
    Hortense - I bought a satin pillow case cover at Sears.  I found a satin night cap at Sally's Beauty Supply.  Between the two of them, my hair definitely is not tangled as much in the morning.  I had no hair inside the cap at all until this morning - 2 hairs (day 19 post 1st chemo).  It's one of the ways I am monitoring how good my hair is holding on.  
  • Lmflynn
    Lmflynn Member Posts: 273
    edited April 2012

    Hortense, the most important thing for the shampoo is for it to be no sulfate, no parabens...I used one from Regis called Pure and the Kenra spray on ....if you have a Trader Joes or Whole Foods..or something like that would have one you can use....one women on here used Burt's Bee ...think gentle, natural and you'll be good!

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

    How critical is the Kenra spray-on guys?  My hair gets so nasty by day 3 that I didn't want to use any kind of leave-in conditioner...I'm assuming it will make it oiler and dirtier - no??? 

  • Lmflynn
    Lmflynn Member Posts: 273
    edited April 2012

    I used it very little, I have thinner oily - ish hair...and while it did dry out some during chemo, it got pretty bad a few times only washing every 4-7 days.

  • victorious2012
    victorious2012 Member Posts: 37
    edited April 2012

    Hortense, I used got a satin pillow case from Bed Bath and Beyond.  It is pretty soft.  It doesn't say what brand it is on the tag, or I would tell you.  But I definitely recommend getting a satin pillow case to protect your hair.  I also wear at satin cap at night and that also works well.

    Dancetrancer, I was more comfortable after the 4th treatment.  It has behaved pretty consistent since tx 3 or 4.

    I used Burts Bee's Baby shampoo.  It's worked well for me.  Although I have read some things about people experiencing tangling with it.

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

    Lmflynn, your hair type seems very similar to mine.  Thanks for the input!  

    Thanks victorious. Smile 

  • tc9876
    tc9876 Member Posts: 49
    edited April 2012

    Just washed my hair.  Halfway through 6 TCH and I have lost about 50% of my hair. <sigh>  I may need a wig before all is done.  I'm going to stick with the caps since I don't want to go completely bald.  But my pre-chemo hairstyle will not/can not be my post-chemo style.  This is not what I was hoping for from this experience.  Hmmm, I guess I'll add this to my increasingly long list of things I hate about BC. 

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

    tc, that is tough to hear, but I appreciate the report.  I'd rather be realistic in my expectations and be mentally prepared that this may happen to me as well.  I'm doing TCH as well.  

    BC sucks.  Hang in there dear!!!  

  • Laura5
    Laura5 Member Posts: 419
    edited April 2012

    Hortense,  Several ladies on this thread recommended DermOrganic shampoo and conditioner. I purchased it from Amazon, but I think many salons carry it as well. Dance, I also purchased the Kenra spray on - leave in conditioner from Amazon but never needed it.  I ordered a satin pillowcase from Amazon as well, good old Amazon! I never used any of these products ahead of treatment, but I did follow Penguins protocol throughout treatment and had great success.

    tc9876, I am so sorry to hear that you are losing so much hair. Can't help but wonder if the new machine doesn't work as well as using a freezer or dry ice. I also wonder about the higher temperature they recommend for the machine. Hang in there, you are still so much better off than you would be without the caps.