Any insight in cold caps?

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this is my 2nd time around. And I can't lose my hair. Don't have a plan yet. Had a recurrence in aux node and rest of pet clean. Waiting on mri to develop a plan. IF I have to do chemo again, I have to use these cold caps. Has anyone had a good experiwnce? Did they cost toi an army nd an leg!?? Thx ladie

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited March 2015

    As Rose said, there are several threads dedicated to Cold Caps but I will give you a quick answer. I used them and they worked. Although I have a very thick head of hair, I probably lost 1/3 of my hair. It was definitely thinner but the average person did not know what I was going through. They cost roughly $450 a month, more if you use their representative as a helper. They were an exhaustive process which starts 30 minutes before the first infusion and last 4 hours after the last. If there is no special freezer at your infusion center to keep the caps at the required temperature, they need to be frozen with dry ice. Hauling the caps and dry ice in a cooler is bulky and a pain but it really depends on your priorities. I was very happy to go through all the hoops but not sure if I would do it again.

    Check out the Cold Caps threads. Btw, there is a new system that supplies continuous cold air through a compressor I think, chilling the caps to the appropriate temperature. THIS is much more appealing and I would consider this system over the CC.

    Good luck -

    Amy

  • Alibeths
    Alibeths Member Posts: 656
    edited March 2015

    Do you know what its called? Thanks!

  • jc254
    jc254 Member Posts: 439
    edited March 2015

    I think the new system Amy is referring to is called the Dignicap. They just recently finished a US clinical trial for this machine and the next step would be FDA approval (and hopefully insurance coverage) but I'm not sure of the timeline. I used Penguin Cold Caps and was very happy with the results. I kept most of my hair and you would never have guessed I was going through chemo. Most of my coworkers had no idea (and still don't). Yes, unfortunately it's expensive to rent the caps and buy dry ice for each infusion. Some women have been successful securing financial aid through a nonprofit called the Cold Cap Assistance Project. Look for them online. There is a very active thread on here called "Cold Cap users past and present" where you can find out much more about cold caps. There are several cold cap users currently posting on the thread who, like you, experienced hair loss the first time around.

  • mdg
    mdg Member Posts: 3,571
    edited March 2015

    Check out my blog....Penguin Cold Caps for me.  I have photos and details in there.  Happy I used them.....my son was young and never saw "sick Mommy"...I still looked the same all through chemo. 


     

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