Talk to me about Cold Caps!
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
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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.
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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.
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OnTarget - Im surprised you had to do chemo if your oncotype is 16
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I found this YouTube video about the Cold Cap experience very helpful- https://youtu.be/sPXCaAaWmIA
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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!
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Thank you all so much for your responses. I will check out these resources!
Best,Anna
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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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