Talk to me about Cold Caps!

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aln82
aln82 Member Posts: 15

Hi all,

I just found out a few hours ago that i will be doing chemo. In between the crying and totally bizarre inappropriate laughing I'm doing, Ive been researching cold caps. I'd love to here about your experiences with it, pros/cons, successes, failures, etc! Any info will be great!


Thank you!


Anna

Comments

  • LMS458412
    LMS458412 Member Posts: 301
    edited September 2019

    I am currently doing chemo and using the Dignicap system. I am lucky that my cancer center offers it and they had an open slot to fit my chemo schedule.

    It's really easy as far as coordination goes. I had to go in for a cap fitting the day before. The day of my infusion, I have to arrive with wet hair (under a shower cap). The nurses wet my hair even more, then fit the cap on and hook me to the machine. There's a 30 minute cooldown during which I receive my pre-meds. That 30 minutes is absolutely awful. The worst brain freeze ever, over and over again. Then, your head goes numb and it's not bad. I have a heated blanket to keep me comfy. The two chemo meds take just under 2 hours. Then I have to have the cap on for another 2 hours before I can leave the center.

    You should wash your hair as little as possible (once or twice a week). No conditioner. No hair drying or styling. No dye. No haircuts. I try not to touch my hair, except to gently comb it.

    I have no idea if it's going to work. I've had 1 session, still have 3 to go. But, I wanted to give it a try. For me, it's not so much a vanity thing as it is being able to feel in control of something. Just like eating a healthy diet, exercising, losing weight, sleeping well....it's something else I can try to take charge of when there are so many other things out of my hands.

  • OnTarget
    OnTarget Member Posts: 447
    edited September 2019

    I've had two TC sessions so far and I'm using Penguin Caps. My hair should have fallen out three weeks ago, but it's still here!

    It is shedding a lot and getting thinner, but I look normal. I have some minor bald spots in front of my ears, but the hairs from higher up cover it.

    It is hard to tell how 2 more sessions will impact me, but for now I'm happy, and I feel I'm less likely to end up permanently bald. I know that is rare, but I don't want to be the unlucky one with that.

  • Askmissa
    Askmissa Member Posts: 76
    edited September 2019

    OnTarget - Im surprised you had to do chemo if your oncotype is 16

  • Askmissa
    Askmissa Member Posts: 76
    edited September 2019

    I found this YouTube video about the Cold Cap experience very helpful- https://youtu.be/sPXCaAaWmIA

  • Magari
    Magari Member Posts: 354
    edited September 2019

    https://community.breastcancer.org/forum/6/topics/735873?page=700#idx_20996

    This thread is 700 pages long on the topic! So you may want to skim through the last 100 or so.

    I personally used Arctic Cold Caps, and would do so again, even though my results weren't as good as others. Best of luck!

  • aln82
    aln82 Member Posts: 15
    edited September 2019

    Thank you all so much for your responses. I will check out these resources!


    Best,


    Anna

  • OnTarget
    OnTarget Member Posts: 447
    edited September 2019

    Askmissa- the newest TAILORx results combine clinical risk with oncotype score, and people in my age bracket with high clinical risk can get some benefit (6.5%ish) from chemo and I opted to be as aggressive as possible, so chemo for me!

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