Cold Caps Users Past and Present, to Save Hair
Comments
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I had emend after surgery. I got severe dry mouth from it...I literally had NO saliva at all! I also had Zofran and Compazine. I never had to take any nausea meds from chemo at all. I know they gave me Ativan with my infusion.
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I had Zofran and Compazine, never had nausea. I am 15 weeks PFC and think I am done shedding!!!! Good luck everyone.
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I had Zofran and it worked great. Only nausea was with the very last treatment (I was pretty worn down at that point from flu and low hemoglobin) and I took Compazine for that. I did have Emend once (for a different issue, mid-chemo), but I couldn't tell any difference.
Ladies who've sent back their caps: How long did it take to get instructions on where to send them? I've been waiting for a response for two days. The caps are cleaned, packed and ready to ship. Meanwhile, I'm watching the money I'll be credited for returning them early slipping away.... Frustrating.
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Mazie - Every time I email PCC support, I also send a duplicate request to their website with a complaint that I've not received a reply. This always generates a response. I wrote in the email that I am putting them on notice that I'm ready to return the caps and I will not be responsible for additional payment due to their delay. They then credited my account for 3 days to compensate for not getting back to me timely. Of course their delay required that I lug the caps to UPS when I was feeling horrible rather than being able to get that tedious task done when I was flying from the steroids.
Marley- Yea for you. I will be darn happy when my shedding finally stops.
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I'm on day 24 and having a bunch of shedding and my scalp feels a bit sensitive today. Still loads of hair though. I had my second chemo infusion two days ago. The shedding will continue some, eh?
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Hang in there, Agnes. It will continue. Your hair won't look like it did when you started but you should still have hair.
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Kazzy, I had Emend during my treatments and I don't think it impacted the cold caps at all. It's not the type of loss that the actual chemo drugs cause for sure!
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I used Penguin caps during my chemo in 2012. I kept more than 2/3 of my hair right after chemo and kept shedding for another 2 months after. The shedding after chemo was worse than during chemo, so I think I was able to keep more than 1/2 of my hair. It was thinned a lot on the top, almost could see bald spot and the shedding stopped. My friends said they couldn't really notice if I don't tell them. I weared a topper for several months and the new hair came out. After the shedding stopped, my hair was growing fast and almost no hair was falling out for about 1 year and then hair started falling again. I think it may be caused by tamoxifen. I started taking biosil and also used equate for women in Oct 2013. Since then my hair never fell out more than 10 strands of hair everyday, even on wash day and so much new hair has grown out since then, especially on the top. I can see so much new hair standing on my head right after hair wash.
These pictures were taken recently. I am so happy that I used cold caps and so lucky that cold caps saved my hair. It was so stressful to use them during chemo, but it's really worth it. 
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Xinghong great pics and story - you look so happy and beautiful!
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xinghong
Thanks so much for sharing. It's great to hear the about how the hair is one year later.
M
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Kazzy - I took Emend and I kept 65%- 70% of my hair - see my avatar. Most people had no idea I had lost any at all.
Xinghong - Your hair looks wonderful!
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Xinghong - Awesome photos and you look beautiful. Thanks for the advice about the tamoxifen. I'll start it soon and I am concerned about the hair issue. I'm glad to hear the BioSil worked for you. I've been taking it and I hope it will help me through this whole mess.
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Thanks ladies for your compliments. I always can get helpful information from here and I am very happy if my information is helpful to anyone.
Warrior_Woman, I took BioSil and also used equate on my head. I checked with the pharmacist in the hospital and she said both of them are safe to use. To be honest I am not sure which one really worked. I started using them at the same time.
My hair was very dry and brittle after chemo and I used olive oil with hair mask when I washed my hair and now my hair texture is much better.
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Hi Ladies - saw this just hot off the press! So great to see cold caps getting some press and getting closer to FDA approval!
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Washed my hair today 4 days after 2nd infusion. I might have shed 35 percent of my hair today mostly in the underside and the back after the wash. There are now large bald areas on the front sides above the ear as well as a large area at the back of my head. The area at the top stayed as it was when I last reported it. At this rate I am pretty sure I will lose most of it in the next few days but I have not fully given up. The tenderness of my scalp had subsided could be the aloe vera. This could be the reason why I have not seen anybody had any sort of success with cold caps on TAC. Whatever happens I am still grateful that I tried it and that it worked for a lot of folks in here.
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301724 - That is a great article - so exciting! Thanks for sharing!
I cannot wait until this is available to everyone AND is reimbursed by insurance. Everyone deserves this option!
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Hello everyone,
My mother is using the Elastogel caps. I'm proud to say that she's had her third TC treatment, and she still has most of her hair.
I'm curious....After your final treatment, did any of you experience a lot of hair loss? My mother has her final treatment on May 1st, 2014. It's like sitting on pins and needles waiting for something to happen, but we are praying that nothing happens.
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I continued to shed after chemo but still had a full head of hair. If she has hair now....she will have hair when she's done. Congrats on the success!!!
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pcher5, that hair wash yesterday must have been very disheartening.
Remind me what TAC stands for? If the A is for Adriamycin, that's probably the culprit. But based on others' experiences, you should start growing new hair much sooner having used the cold caps than you would otherwise. At least I hope that's the case for you!0 -
delightful, to me shedding after chemo is worse than during chemo, but at the same time new hair also grows out. So as MSG said, if your mom still has lots of hair after #3, she will be fine.
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Love that you made that pic your profile pic xinghong! Awesome!
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I was really excited to see that article. I didn't realize that FDA approval could be as soon as 2015. We are pioneers ladies!
pcher5, I'm really sorry the caps don't seem to be working very well for you. Hopefully, once cold caps get FDA approval, they'll get to work figuring out how to make them more effective for the ACT chemo regimen.
Deelightful and Agness, you are both far enough along that you can be comfortable the caps are working well. Everyone's shedding pattern seems to be different with some women shedding for months after chemo. You should both be fine even if the shedding continues for a while. You'll be able to notice a difference, but others will not.
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Thanks dancetrancer! It was taken on a cruise last Christmas and it was so windy.
Every time when I saw this picture, I thought about what I went through to save my hair. I am so grateful that I got cold caps information from this website, from everyone who contributed their experience, Frank who invented Penguin cold caps, my husband who drove one hour to pick up dry ice and went to hospital every time with me. Dancetrancer, Your hair of your profile picture looks amazing too!
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Awh, thanks! I love cruising, and I understand the wind tunnels!!!!
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We need to photograph ourselves in front of giant fans to get that Xinghong hair-do! It is a great way to celebrate.
I started back to work this week. Few people have any clue what I've been through. Most people thought I was out on sabbatical. They didn't even know about the cancer. Surgery is this coming week so I will be out on "sabbatical" again.
It's hard to believe FDA approval on the caps by 2015. I would have expected it to take a lot longer.
Where is ArtSmart??? And what about our Hairy Voodoo Doll contest? There is still time to enter, Ladies. What else will you do with that mountain of hair you have saved in baggies?
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I don't believe it has been approved by the FDA yet. I just saw my oncologist two days ago, who took part in the study, and she told me that her results have been sent in to the FDA and she is waiting to hear what will be decided. She had 30 women in her test group and said the results were pretty good. Meanwhile, she's not allowed to use the machine on anyone else. She did tell me that she thought that while these were easier to use, the results were better with Penguin Cold Caps.
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How does it work with FDA approval? Will it just be the DigniCaps that get approval or all cold caps? Does anyone know?
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Warrior_Wom, it's a good idea to take photo in front of a giant fan.
I told co-workers about my cancer and treatment. they are very supportive and caring. But sometimes I think maybe it's better not telling if it's possible. It's easier to move on and get back to normal life, at least in front of others. What surgery will you have on the coming week? Good luck!0 -
Xinghong - My exchange surgery is Thursday. I'm getting my new boobs. I told my PS to think PERKY! Let's hope they don't look hideous. After that it's my nips and then finally my tats. Hopefully I can wrap this up by the Fall and feel completely done. That will be around the time I can finally cut and color my hair. One year of total mess.
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has anyone used the cold caps in between treatments? Does it help?
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