Cold Caps Users Past and Present, to Save Hair
Comments
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Angie, what a great opportunity to spread the word about cold caps. Well done!
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LRFTexan, it is normal for you to be starting shedding at this point. 100 hairs is minimal considering we have hundreds of thousands of hairs on our head (I don't recall the exact number). How much will you shed? It varies. Average is probably about 20%, but on AC many lose more than that - "depends" is the best answer I can give you. Why would it be too much to want hair for your 40th, or for any other day for that reason? Be easy on yourself. And remember, worrying will not change the outcome either way, it will just make you more miserable during the present.
Angiel, great job on the interview!!!
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Angie, great interview! We're like a little capping army in the woods. Sooner or later, women will reap the benefit of our collective efforts. Good shooting! (I sent the link to the panel here at my clinic. We can get a little Midwest competitive spirit going.)
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Thank you for posting the link Wildflower! I think the piece was done very well! It's crazy to think that this technology has been around for years and it still isn't being more widely used....and that people still haven't heard about it.
Pat, yes I have Dr Bloom and he agreed to do the interview only if I would do it too
And yes, he still only talks about Cold Caps if the patient brings it up. Funny thing, though, his mother-in-law is currently undergoing chemo & she is using Cold Caps. 0 -
Angie great interview. Thanks for getting the word out on cold caps. I don't get Dr who know they workand won't recommend them. will be the first to use them when a family member is going through chemo.
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"Funny thing, though, his mother-in-law is currently undergoing chemo & she is using Cold Caps." Now that is funny! I wonder if Dr. Bloom brought cold caps up to her, or if she had to find out on her own like we did!
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Maybe the doctor is afraid if he suggests it, and the pt loses their hair or has some kind of adverse reaction, he will be held liable. ????
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Angie, great interview! You look beautiful! I showed up to my 3rd TC last Thursday and my MO was surprised to see I had hair. She was thrilled for me and asked if it was worth all the effort and trouble. I said, "Definitely!" And rattled off all the reasons why it was worth it for about 5 minutes as well as patient advocacy, etc. Not sure if people fully understand the magnitude or impact hair loss can have on someone who isn't going through chemo. Well, I have one more round to go. My hair has definitely thinned out by about 30-35% but my shedding has reduced quite a bit. I have super short hair (my hair was almost a pixie cut prior to my decision to get chemo) so I expected to be on the thinner side of the norm. Fingers crossed that they will stick around for round 4 and then the possible PFC shed. Regardless, I am glad I am doing PCC.
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You're hanging in there, aj! Glad to hear the shedding has leveled off and it's very possible you won't have a lot of PFC shedding. Doesn't it feel good to demonstrate to the medical community that cold caps actually work?
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This is a stupid question but what does PFC stand for? "post..."something something??? I am 3 weeks from my last chemo. It seems like my shedding has lightened up a bit. Last week I was pulling hair out of my brush every morning. Today seems a bit less. I am hoping it will end soon. My hair is definitely thinner but I don't really think most people would notice. I notice but I am still so thankful to have hair. It has made a huge difference in my well being throughout this whole ordeal. If I had to wear a wig right now I know I would be upset. I would have to deal with it.
I feel fortunate that I had the opportunity to use the caps and that they worked! I would recommend it to anyone. Worth the hassle for sure!
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Suzanne - congratulations on your success! PFC is post final chemo. Some people use a different word for the "F". LOL.
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Thank you PatinMN...I should have been able to figure that out.
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Ladies, did any of you do the weekly taxol? How long do you have to cold cap after each of those treatments? I'm trying to look to the future that I WILL have hair instead of trying to figure out if I will "make" it through the AC. Day 28 since the first infusion and still maybe only a loss of 100-150 hairs total - this is such a mental game.
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LRFT, I did the weekly Taxol after AC also. The timing on the capping is the same. 4 hours after Taxol is done. For me that meant an overall 7 hour day of cap wearing instead of the 8 hours I did during AC. And yes, you WILL have hair
I am 18 weeks PFC and couldn't be happier about my results from PCC.0 -
Angiel, when did you finally stop shedding pfc?
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Wildflower, I slowed down tremendously between weeks 12 & 14 PFC and by 14 weeks, I'd say I was back to my normal shedding patterns (although I never had paid any attention to daily hair loss).
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Thanks! I'm at week 10 PFC. Mine neds to stop already :-/
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Geez...I am week 3 PFC and would really like this to stop already. It does seem to be a bit less this week. I didn't think this would continue into the double digits!!
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Wildflower
I'm 13 weeks PFC and it has slowed down quite a bit only about 5-10 hairs when I comb and a little more when I wash. Not sure if this means I've stopped or am I suppose to stop shedding completely?
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Aussiegirl,
5 or 10 hairs is the amount i'm combing out every time i comb, too, but it's every single time...wish i could remember what "normal" hair loss looked like, but who of us counted hairs pre-diagnosis?
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My shedding didn't slow down until around week 16. Hang tough girls.
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Me too- shedding stopped at about 16 weeks PFC. All of a sudden you will wash your hair one day and realize the drain's not covered in hair. It will happen, promise.
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Thanks Dancetrancer and jc254 for the encouragement I really feel that until I know that I've stopped shedding that will be when I can close this chapter of the book and move on. Wildflower I know who counted hairs pre chemo 😂😂 I know I use to shed because I'd always flush the hair down the toilet😳😳 Hahahahaha
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Yes, thanks to everyone for the ongoing encouragement. I am so glad I found this cold capping support before starting chemo, but it looks like your bigger job comes with the hand-holding post-chemo!
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Hi everyone! I'm now on Day 30 post my first infusion, I'm also 1 week post my second infusion. I'm still shedding what seems like a lot to me every day- including some WHITE hairs that I didn't even know I had!- but it's still not noticeable. I've probably lost about 10% of my hair at this point. Here's a picture of my hair today:
I went to see my MO today and she walked into the room and goes "Oh my God you have all your hair!" That felt good. I told her how happy I am with my cold caps experience and how it really made a difference in my recovery. She told me she'd never seen it work as well on anyone else (which I find hard to believe). And she said it doesn't always work 100% so she doesn't recommend it to people. And then I said, "well chemo doesn't always work 100% either and you still recommend that all the time." And she said "good point." So I told her I'd be happy to talk to any of her future patients interested in cold capping. She actually seemed receptive this time. Then I went around to all the nurses who told me it wouldn't work to show them my hair. Everyone seemed so amazed.
It's just so crazy to me that more people don't do this! If more people know about it, more people will do it, more medical professionals will see that they do work, and then even more people will know about it because they will actually start telling them! I plan to volunteer here with Cold Caps Assistance Project after this is over too. Cold capping isn't fun but it's not terrible either and it's worth all the hassle.
Thanks so much to this thread for telling me about this and encouraging me with your stories. I have so much hope for a beautiful, confident wedding day ahead!
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tshire, that rocks! Yay!!!!!!
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tshire great job showing them caps work! Agreed...cold capping is not fun but then again neither is chemo, surgery, radiation and medication. The only great outcome is at least when the active treatments are over you can move on WITH HAIR and not wait 2 years for it to grow back or if you had long hair like me - wait several years for it to grow back. You may as well add cold capping to the mix with everything else going on. I feel bad for the countless number of women told not to cap by their doctors and that their hair will come back and then their hair never came back. Doctors just don't get it.....
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Tshire,
Looking good!
Loved your reply to the MO about chemo!
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Angiel, great job on the TV interview.
Tshire, I loved your reply to your MO too! If they waited for everything to be effective 100% before recommending it, we wouldn't have any treatments available. Tamoxifen is only 50% effective!
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The caps did not work for me - I shaved my hair off on Monday (3 weeks after 1st chemo). It was too much maintenance to try to cover the bald spots with the areas of great hair left. Loving my sweet buzz/bald!
I can see however, that it can really work for some. I have thick wavy hair and the caps never felt very cold on my scalp (aside from above my forehead and my neck) despite being the right temp per the thermometer and a tight fit. Funny that the areas that fell out in patches were not where the cold cap rep said most people fail (crown) - my areas were in a big circle around the crown. With my hair buzzed I see a bald circle like a donut around my head.
It was absolutely worth it to try, and I'd recommend it to anyone who asks, but I'm very happy without hair too! I'm actually less stressed without hair.
Andra xo
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