Cold Caps Users Past and Present, to Save Hair
Comments
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shipsgirl - WHOOOOOOO HOOOOOOOOOOOOO!!!!!!!!!! YOU DID IT!!!!!!! I can't wait to be on the other side with you
Hortense - thanks so much for the link. There's so much work to do in our community. I'm hoping I can come out of this ordeal healthy and sane - so I can share what I learned, and help if I can.
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If I decide on chemo, I will start in about 2 weeks. Where can I get a cold cap???
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ForMy - so sorry you are facing that tough decision.
Most of us that are capping in this forum now - I believe - are using Penguin Cold Caps.
Here's the website:
All the info on how to get them is there.
Best to you,
Kay
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Congratulations shipgirl!!! Soopo happy for you, please stay in touch so we all know how you get on post chemo x
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Hello, can someone provide information on where to get cold caps? Thanks in advance
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Shipsgirl, congratulations! Such a nice story about the bell. I don't know if my chemo center had one. We were in such a hurry to get home in time to change the next cap that I never even noticed.
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I am starting chemo mid-Aug, so if you are interested in sharign caps, let's disucss. They rent for $455 for each of the first 4 months and $100 thereafter.
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Shipsgirl- yay!!! Very happy for you!
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Thank you everyone! It's a good feeling. I'm looking for someone in British Columbia to pass some equipment on to.
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Yay shipsgirl!!! Your nurse is awesome! I'm so happy for you!
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Kaydee - I am glad you spotted that article. I do hope you will pass it on to others. It's chilling to think that women either wait, or have to wait, so long before getting help.
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Shipsgirl- WOOHOOOOOOOO!!!!!! You did it!!!!!!!!!!!!
Welcome to the land of us PFC-ers.
Now the next best feeling is getting those caps shipped back.
Good luck to you girls capping right now, or just starting- it goes by in a blur and you are through to the other side with the rest of us- and hopefully WITH your hair.
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You're right, sciencegal, I shipped them off yesterday!!! Today's my birthday and I couldn't have asked for a better present!
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Shipsgirl, happy birthday and congratulations on finishing chemo! I hope your cold caps make it across the border OK, unlike curly123! Curly - did you get it resolved?
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Thanks Patin, I drove my across the border and mailed from within the US. At the border I told them they were gel packs that I was returning. And it was cheaper to mail than Canada Post.
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Shipsgirl - happy happy b day and congrats! You are PFC!!! Yayyyyy!!!!
Patin - nope! i finally just received the package back and will be sending back with different info listed. Let's see what happens. Geralyn was no help at all when i contacted her. Craziness.
have a nice weekend everyone.
I have zero lashes now and very little in the way of brows. Sigh. Feels like forever before i will look normal.0 -
YAY Shipsgirl, you did it!!! All good from here on...and happy Birthday!
Curly, that really stinks, I hope the next shipment goes smoothly. Your lashes and brows will come back quickly once they start sprouting. I thought I had lost all my bottom lashes but when I pulled my eyelid down I could see a whole row of tiny new lashes. Hang in there, you made it through the worst part
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shipsgirl- Congratulations on finishing up and a belated Happy Birthday!
curly - It does feel as if getting back to normal will take forever, but it will happen. I remember realizing with resignation this time last summer that I was just going to have to wait; however, the time goes by and they do return. My brows came back pretty quickly which made a big difference in how I looked as I didn't look so pale and featureless. My eyelashes took longer, but did eventually grow out again. Most people couldn't notice.
Both of you, take good care of yourselves, eat well and get lots of sleep. I am a year out from my last chemo and was surprised by how long it took to feel strong again. I went through six weeks of radiation after chemo and am on a hormone inhibitor now (Arimidex, which has not been a problem). Perhaps we are all different and you will bounce back faster, but my doctor told me it would take nine months to a year and it has.
I started exercising after chemo and that helped a lot to give me more energy as well as make me stronger. It also helped me when I decided in February to lose some weight by eating less and more carefully. I've slowly taken off a dozen of the middle age pounds that snuck up on me over the years and feel and look so much better. I am definitely going to keep up my new way of eating. I was told no red meat and to avoid any chicken, eggs and dairy products that have hormones in them which means shopping carefully and reading labels, and to eat lots of fruits, veggies, beans and grains. My doctor also said to snack on nuts when I feel hungry or need a lift of energy. I nibble on a wide variety of dried fruits so I don't feel sweet deprived. My husband got inspired by me and decided to go on pretty much the same diet - except that he eats red meats - and he's also lost a dozen pounds, along with his muffin top.
I live in a resort area and am always running into people I haven't seen in a year or two - I pretty much hid during chemo last summer. Many of them actually look downright skeptical when I tell them I went through chemo last summer as I look so normal and healthy. I have to tell them all about Cold Caps and hold out a bunch of my hair so they can see how much new hair is coming in before they believe me. The first 6 - 8 " are much thicker than the rest, so the new growth is obvious. I am always delighted to let people know about Cold Caps. They made such a difference for me and I am hoping by telling others about them word will spread. Fighting my cancer would have been a completely different and depressing experience without them.
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Is anyone taking Adriamycin, Cytoxan and Taxol and having success with cold caps? My MO told me it doesn't work for bc patients taking those chemo meds.
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When do you put on the cold cap? While you are getting chemo, before or after?
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Are there any triple negatives having success with cold caps?
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Candi07
You should check out the Penguin Cold Caps website which will answer many of your questions however having used them for my five Cytoxen and Taxotere infusions the caps go on 50 minutes before the first drug is administered. There are about 90 minutes of predrugs administered so it was always a guessing game when to time the start of the first cap, however I played it safe and usually had the first put on at least an hour before the Taxotere. Then the caps are replaced every 25 to 30 minutes. This continues throughout the infusions and ends with the last cap four hours after the Cytoxen ends. It's a tedious process and requires a helper but it was very much worth the expense and effort as I kept at least 2/3 of my hair.
Good luck -
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Candi07 I did AC-T. I did lose quite a lot of my hair, but I still have some. I would definitely do it again. I didn't lose it all, and just when it has gotten to its thinnest, it's time for it to start growing again. The alternative would have had me bald for 4 months.
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Hi everyone, I've been busy so haven't been reading regularly, but want to cheer on everybody in the midst of treatment, and also want to offer to send my writeup to anybody beginning (or considering) using Penguin Cold Caps. I'm well beyond three years PFC -- finally at a phase where it all seems like a distant memory in many ways. At the same time, I remember *exactly* how I felt when I received my dx. Though so many more women now are learning about PCCs, there's a long way to go and I continue to do everything I can to help spread the word so that women know they have a choice in how to handle this devastating side effect of chemo.
If anybody would like my writeup, please PM me or email me at sebm9@earthlink.net
Cheers,
Susan
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Getting that pre-chemo anxiety majorly. Wednesday is my last TC, but for some reason it is hitting me the hardest. I feel like I got this far but this last one may be a disaster- like the caps won't work and I will have come this far to loose my hair. Definatley an Ativan night.
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Tmb...you will be through before you know it. Stay the course. I remember when I finished chemo and rads it was anticlimactic. No bell ringing. Just pack up and move to the next step. Hang in there.
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On Day 19 after first treatment, and when I scratched my ear my hand came away with a clump of hair. That was scary! Chemo 2 of 4 is Thursday and I'm short on helpers..so many people out of town that day I really worried that I won't be able to find enough people and want to keep as much hair as possible. Such a stressful process... Seeing the hair coming out despite my babying it really was a downer.
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Tmb... Hold tight! We are right here with you. It is so stressful. I'm a few days behind you with my TC x 4. My last treatment is Monday and I've got the jitters too. I had a dream last night that after all this - all my hair fell out. I'm chalking it up to anxiety and am staying hopeful that I'll have some hair left when this is over. I believe you will- and you'll look and feel great once you get through it.
Portland, you are smack dab in the middle of what can be one of the worst shedding times. Take a deep breath and push forward. Sending you good vibes and hoping everything works out with your helpers for the next round.0 -
Hi I was going to use the cold cap but decided at the last minute. Not all hospitals have embraced it . The bottom line I was very upset about loosing my hair for months but when it finally happened yes it was traumatic in the heat too. But I got four low cost wigs to use that have highlights in them . Lots of people tell me they like my hair and I smile. My last chemo if all goes well will be end Sept so I will start seeing hair growth six weeks. I hope you all keep your hair, but just remember after a few weeks when it's gone it's not a big deal.embrace it cause it will grow back, met a girl in the lobby at hospital 36 lost her hair. It was back in a few years the length she had it with beautiful highlights. So you will start short as it grows. Remember hair does not define you, you are beautiful inside and out.
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Thanks nlm- you are brave!!!!
Sadly some of us have to hide having cancer from customers, or dont want to alarm our little kids - many reasons beyond just looking good. although some days i sure had wished i could let people know, because i was too exhausted to accomplish all their demands on me at work.
I hope your hair grows back super fast!!!!
Portland do not despair- indeed you are right in the biggest shedding phase and all of us lose hair behind our ears. the ear flattens back when the cap is applied and acts as an insulator for that area.
I lost the tufts right in front of my ears too because the caps werent snug there due to my cheekbones or something. The new hair there is now two inches long. Going strong.
Hang in there, also tmb and Kaydee- i know it is stressful but the caps usually do work.
Deep breaths and continue to baby your hair- and yourselves!!!
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