Cold Caps Users Past and Present, to Save Hair
Comments
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Hi guys,
I got a call from someone starting the caps tomorrow. She needs to know the starting temp...but I cant remember. Can someone help me?!!0 -
She has to get that temp from Geralyn - it depends on the thickness of her hair.
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Yeah...Her calls are not being returned and she's in a panic.
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Oh no! poor thing. I can understand that feeling - the day before first chemo and not knowing your temp would be very stressful indeed! All I can tell you is my temp for my hair, which I told Geralyn was thin and fine (but she asked if I could see bald spots b/c it was so thin and I said no) was - 30 C degrees, warm up to - 28 if I was getting so cold it was painful/scalp was getting too red. I never had to warm it up, - 30 was fine.
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My husband and I THOUGHT we remembered -27, my hair is long and thick. We weren't sure however...so this definitely helps. Thanks!!!
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-34 for my thick hair
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-32 for my fine hair.
3 months PFC and I'm still shedding like mad. I'm not particularly troubled by it from a balding standpoint -- my ponytail is quite respectable, thank you very much, and my sideburns look quite edgy--like one of the Voice contestants.
But it is annoying-- hair turns up in the oddest places and it's that reminder....
I got bloodwork done last week and for some reason I got a copy this time and noticed toady my iron is slightly low so I guess I'll buck and take a supplement. Sigh -- I truly hate my digestive system....
Maybe that will end the shedding or maybe it would end anyway -- that is the problem. You never know what causes what.
Although Penguin Cold Caps caused me to keep my ponytail!0 -
-33 for my fairly thick hair.
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-32 for my fine hair and TCx4 chemo...
I shed from Feb -June.this was all post chemo...I lost very little through treatment....and I swear I thought I'd lose so much hair that it would look horrible....but it never did, it got thin...but my hairdresser kept telling me she saw 1-2-3inch flyaways every where....I'd say I lost 30% in total...
Shedding is part of this, I think when I was using the caps Frank and Geralyn and all ladies on here talked about it...a lot.... That we have about 100,000 - 120,000 on average on our heads, and the average life of a strand of hair is 6years ... The older hairs, the weaker hairs, they are going to fall out....we are saving our younger stronger hairs ....I think this is why when you stop shedding, you will not shed at all....I barely shed any hair for 6 months after I stopped...
I'm thrilled with the results, I watched my sister who went thru chemo 18 months before me, deal with wigs, regrowth, topless, etc for almost 2 years....she was awesome and she dealt well with it ... But I know she would have used the caps..but her MD ( in dallas ) said they don't work ....btw...she was the best helper!....
I've said this here before...but it is about perspective, your hair isn't going to be the exact hair you had before chemo for awhile, but it will be good, very good most days...good enough other days....but you will be happy you kept the 60-70-80% of it :-)0 -
Dgreg, Yay for you! Great way to get the word out too. Thank you Dance for the new link to Dgreg's story.0
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You guys rock! Thanks for the temps. I just got off the phone with her. Talking to these people soothes my soul. I love it. We all know that fear of the first chemo. Its nice to be able to offer support and reassurance.
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How awesome, awesome, awesome geewhiz! What a great feeling!
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Hi all! I'm happy to say that my daughter had her 3rd chemo treatment today (3 down, and 5 to go), and even after having a mohawk because she was so over the shedding... her HAIRDRESSER was the person who convinced her into keep using the caps. She told my daughter that she was losing long dead hair, but it was only old hair shedding, NOT clumping... and she wasn't losing hair from the roots. Although she had never heard of the cold caps, she thought they were working. Geralyn and I had both tried to convince my daughter to keep using the caps... but to no avail. Thank God for that hairdresser and her influence!! :-)
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Portishk - so glad to hear that! I think you're daughter will be glad later that she used them.
LeesaAnn - I too am seeing no significant growth other than at the edges e.g. by my temples - however - my hair feels thicker - so I think it's growing - it's just hard to see. I'm nearly 14 weeks PFC and the shedding has finally gotten back to what I think is normal - but it's hard to say because I paid zero attention to shedding before going through this. I shampooed yesterday and had about 20-30 hairs come out in the sink. I'm sure your hair is growing - hope this helps - Lucky
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Can anyone tell me how much/often they performed tata massage after getting the TEs replaced with implants. met with by RS today and he said to massage - but I forgot to ask how much/often. Don't want one of my tatas pointing the wrong direction after all this effort -
thanks,
Lucky
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portishk - that's really cool! Yay for the hairdresser!
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Dgreg~
Gosh, your online story about made me cry. I am proud to be a part of this group of ladies...
Portishk~ Hugs to your daughter...
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The temp is usually between -30C to -35C. Mine was -35C: thick hair, curly, lots of it. Thinner, finer hair usually has a cooler temp.
Hope this helps,
Susan
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The cap temperature should be between -28.0° and -32.0° Celsius. No higher-no lower!!!
Portishk- Because your daughter doesn't have hair protecting her scalp she needs to have a covering to prevent skin damage. You might try the linings that are used when wearing a wig.
Dgreg-Great story! You look gorgeous! I was very glad to see that your husband applied the headbands properly. I've seen them put on the wrong way were they had no beneficial affect. You aslo used the same coolers I recommend-I love em! There so easy to manuever. I wish the journalists would stop calling them 'ice caps'! There is no ice in the cap and I think this confuses those in the medical profession. They assume the caps are the same caps from 30 years ago that used ice and were quite a mess. Were you instructed to have your caps at -22.0° Celsius? I've never heard of that high of a temperature used...It worked anyway! Yay! I always wondered if the warmer temperature was that critical...The clinical trials done in Michigan used temperatures between -15.0° and -5.0° Celsius and women still saved their hair. Congrats on your success!
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Makingway - she got specific instructions from Geralyn, and we had the caps exactly between 28 & 32 C today. She also had several layers of gauze protecting her head... as Geralyn instructed. I'm just so thrilled that her hairdresser had such an influence on her... and even told her to think twice about it BEFORE she cut my daughter's hair. She had never even heard about the caps, but still thinks they are wonderful and will passing on the info to other clients. I am just tickled pink!! In addition, I met a lady on the plane a couple of weeks ago, and was telling her abou the cold caps. She emailed me last night saying that her good friend was just diagnosed with stage 3 breast cancer, and asked me the name of the website. I passed on the website and Geralyn's info. It feels so good helping others and getting the word out there. Thanks to all who contribute to this website. It's so informational, and such an inspiration!!
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That's great the hairdresser was able to influence your daughters decision. Not that you didn't plant the seed, so to speak
Don't you wish our kids would listen to us parents? It is wonderful knowing that you can help others. I bet the woman that you met on the plane is believing you are God sent! If she needs help/advice with using the caps feel free to contact me. I help with changing the caps and also offer advice and instruction by phone. I am in the Los Angeles-Orange County area. I've never used a large enough piece of gauze to cover the entire head. Is that what you're doing? How do you keep the gauze in place?0 -
Makingway - can you tell us what you have seen done "right" vs "wrong" on the bands? Just want to double check our technique! Thanks!
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DGreg: That was a great news article. You looked so cute with your cap on. Thanks for sharing.
PortishK: Yay for your daughters hairdresser. Wishing the best for you and your daughter. It's easy to get discouraged when you see all the shedding.
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Dgreg: I loved the news story. You look beautiful! Your hair is really hanging in there. Congrats on making it through chemo and keeping your hair. The story really touched my heart - - reminded me of everything we all have been through to keep our hair. It's been a journey but definitely worth it. I also had to chuckle because I was so self conscious wearing the caps. I had a private room and always hated when I had to walk through the common area to use the restroom. I felt like I looked like such a freak with the cap on. Well, seeing you makes me think that maybe I didn't look so bad afterall because you still look great even with the cap on!
TC9876: Hang in there. How much hair do you think you've lost?
Portish: Your daughter's hairdresser rocks! Glad to hear she's sticking with the caps.
And yes, I agree with Nmoss. Shedding is a part of this process. You will lose some hair. It's inevitable. Very frustrating, but the hope is that we retain more than we lose and still have full head coverage.
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Ladies, I do want to comment on something in the article that accompanied Dgreg's wonderful news story. The onc states that the caps do not work with the drug Adriamycin. Well, that is not necessarily true. While it is a harsher drug, and some have not seen success even with the caps. I want to make sure that ladies that are interested in using the caps know that the caps CAN work with Adriamycin. I had 4 rounds of AC and 4 rounds of Taxotere and I still have a significant amount of my hair.
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Hi ladies,
Glad some of you liked the post. To answer your question TC, the additional scans were for a lump I found in the leftover fatty tissue from my recon, but I had Mammo, MRI, and ultrasound all of which gave different results and therefore could not biopsy. But I am having the tissue removed in the 2nd part of recon next month but the Radiologist, BS and PS think it is a fatty deposit.Not going to worry about until there is something to worry about.
Making way, thanks for your input. I dont know how to post pics. Glad the PCC worked for you and you are able to help other women with the PCC's.I believe It is totally up to the patient which brand they choose, I just tend to see allot of negative things being posted in reference to brands and I wanted to share my story. Please don't mistake this as a PCC bash because I am happy anyone can keep their hair and I don't care which brand. Cold Caps are not an exact science and every person and situation can and will be different.
What I have read here is that there are points during treatment no matter which brand, no one is 100% happy during the process. Because lets face it, NO ONE wants to be here. There is a level on unreal expectation being thrown around indirectly that losing any hair is bad,which simply is not true. During chemo,we are supposed to lose hair and we are doing this to keep as much as possible. We are defying medicine in a way.
Honestly, I am a little off put by your point by point dispute of what I know to be my experience and my truth, that I wanted to share with the other ladies. How can you "clarify" someone else's personal experience? All any of us can do is share our own personal experiences. Which I thought was the purpose of this board. No one person or brand should be giving the imprssion that this is an exact science or any person or brand is an authority of the Cold Cap process since the rocess will vary for each person and treatment.
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That's good to know victorious (in case someone asks me; I'm not doing Adriamycin). I was wondering about that.0
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-32 for me, fine hair.
I'm 10 weeks PFC (TC x 4), with almost no shedding post chemo. My hairdresser did a patch test with no ammonia, no ppd hair color last week, and so far, so good. I've decided to wait until I'm done with radiation to color the hair - that will be about 13 weeks PFC.
Susan, regarding hair color... the hair that came in during tx was very gray. Now I'm noticing that the same hair is dark brown again at the roots, like my hair lost pigment through chemo. I have lots of very spiky hairs sticking up from my head, that I assume is the regrowing hair that thinned, although you'd never know that I lost any.
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Victorious, I'll give you an update on the shedding after I wash my hair this weekend. Fingers crossed that it is not too much.0
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nmoss1000-Sorry you were put off by my post. I'm with you, in that, I don't care how women can save their hair, I just want them to save it! And, for more people to know that this technolgy exists. Most definately Cold Caps are not an exact science-there are so many variables. I only wanted to clarify what most of those using the cold caps experience. You wrote what others should expect based solely on your experience with the elastogel caps. I based what I wrote on my experience with the Penguin caps. I guess I should have wrote that I have changed over 1500 Penguin cold caps. What I shared is what I have learned over the last 3 years helping other women with changing their caps. Maybe that would have explained the results I gave better. This is what I base my knowledge on. I wish I did have some experience with the other caps. The caps worked for you-keep spreading the word!
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