Cold Caps Users Past and Present, to Save Hair
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I used well water, but ran it through a good water filter.
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We loaded up on bottled water at least for drinking and brushing my teeth. Showering is now challenging enough with my new hair care regiment. I cannot imagine having to use bottled water.
Today is only day 10 and I'm busy saving hair in baggies for future reference. I'm 7 - 11 days until the moment of truth. If I were under investigation for some heinous crime, these baggies would make me look quite suspicious.
It looks like Neulasta shots are in my future and I read that hair loss is a side effect. Has any cold cap user had problems with this or find ways to prevent or manage it?
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the bone pain with neulasta is the hardest part. Take Claritin the morning of the shot and aleive. Repeat for a few days after. I know it sounds odd...but it works somehow. I didn't do it for my first chemo and suffered horribly. Took it for following chemos and felt so much better.
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i also did clartin and no problems
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Hi Ladies,
I am freaking out a little....finished last TC 4 weeks ago. The last 2 weeks the shedding has really picked up again. I thought I would be shedding less and less now! Did anyone else have this happen? Thanks....
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Hope everyone is doing well. So nice to see people learning of this! I used cold caps April - June 2013 and kept my hair. I'm so glad I did.
Has anyone watched Breaking Bad? Season 1, Episode 6 (sort of) mentions cold caps! Jesse learns Walt has cancer and says to him "Try ice packs on your head. My aunt says it helps with hair loss"
Anyhow, wishing everyone health and to all the newbies...it really truly honestly works. I lost volume but kept my hair! I shed starting Day 17 and through 7-8 weeks post chemo, but mostly me noticed the thinning and not anyone else. I was skeptical and scared but it really did work for me.
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@ marley2, many of us shed more post chemo than during.... I know at times you will be afraid that "all my hair will fall out" .... But I promise you made it through.... You are done with chemo!.... I finished Jan 13 and continually shed until 4th of July.... Much more than most....and my hair was thinner but all over and no one could tell except my closest family and friends. And then from July until the next January I hardly shed any hair.....it's different for everyone.... But what you are experiencing isn't abnormal... Best to you, Lisa
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All done! Had my 4th and final TC yesterday. It felt amazing to take that last cap off and know that I am done. I will keep y'all posted on how my hair does over the next couple months and on when I decide to color it! Thanks for everyone's support. Best wishes to the ladies who are just starting or still in the middle of it! I am so thankful that I learned about the caps. It has made this crappy situation much more manageable.
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Congratulations Daye!
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Congrats Daye!!!! Yay! Another success:)
My hair also shed a lot PFC. It lasted a while but I still had a full head of hair.
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marley2 - most of my shedding also occured after chemo so don't worry. Eventually it slow downs and the best news, you will keep enough hair so that strangers will not know what you've been through. That was my case - I had a thick head of hair and still lost about half (it's really hard to estimate) but I now know how much I lost by seeing three inches of new growth all over - it's makes my longer hair stick out kind of funny but I don't care. Hang in there - it does get better.
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Daye, I'm so happy for you! Congratulations.
Marley, I'm also one who shed a lot post chemo, much more than during chemo. It lasted 4 months and then just stopped. It was a little scary for a while and I remember a few freak out posts of mine in September. In the end, my hair made it through just fine. Yours will too.
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Yay Daye! So wonderful to be PFC!
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Hi--has anyone used Chemo Cold Caps (www.chemocoldcaps.com)? Starting treatments in a week and am trying to decide between Penguin or Chemo Cold Caps. Thanks!
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i shed for about 6 weeks PFC. I think more than during chemo as I go back and look at pics. Now one year later I hardly shed even after shampoos.
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Daye congratulations!!!It feels SO good to take off that last cap, doesn't it? Glad you are all done. Whoopee!
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VG 13 - I have never heard of Chemo Cold Caps brand. I used Penguin as have most of the ladies on here. A few others used Elasotgels.
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daye, congrats on your results.
Vg13. I'm pretty sure that's the company that rents elasto gels at a much higher price than of you had bought them and handled your own ice. It's cheaper than PCC, but not the same product. There is one person on this thread who had success with elasto gels but not happy with her distributor. The rest of us used PCC.
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Thank you everyone for the encouragement...I will to calm down!
VG13 I used Chemocoldcaps had a good experience with them.
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Congratulations Daye! I know how great you must feel.
Marley, I am about 101/2 weeks post PFC and I definitely shed more during these 3 months post chemo than during. I still wash my hair 2x a week with organic shampoo and use cold water. I really need to color it soon for my sister's wedding in March. I am just waiting for the shedding to stop. Still - - I feel so much like my old self with a full head of hair. Good luck to you!!
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Thanks for your feedback Hortense, Marsha & Marley! I decided to go with Penguin Cold Caps and hope to receive them soon so I can have my husband start practicing.
Has anyone put together a final checklist of everything they needed to bring to their chemo sessions when using cold caps and bringing your own dry ice coolers? I think I have jotted down most things I need but just wanted to make sure I didn't miss anything. Moleskin, scissors, infrared thermometer, dry ice gloves, electric blanket, fingerless gloves & toeless socks for ice dunking nails, anything else? Also, does anyone have any suggestions for good coolers to buy that roll? We live in NYC and will be wheeling things back and forth on our own in a cab.
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VG13 - PCC recommends the Igloo 60 quart. The cheapest are at Walmart - http://www.walmart.com/ip/Igloo-60-Quart-Ice-Cube-Roller-Cooler/23735487 I purchased two of these and the dimensions work perfectly for packing the caps in dry ice. Unfortunately, I purchased mine elsewhere and paid a heck of a lot more. I strongly advise that you have your supplies shipped overnight or 2 day. Ground shipping may be delayed at this time of year with the weather. My caps sat in Ohio for 3 days and I was freaking out.
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vg13, add pantiliners for your ears (seriously), scissors, mirror (preferably something that you can look at on a table or counter hands free), leather gloves (several pairs) for handling ice, small towels for wiping down caps, large towels for insulating coolers, large zip lock bags for holding ice. I used tape to label the cap boxes, the coolers with the cap pattern, and the target temp on the thermometer.
I also recommend letting the caps dry out after each use and cleaned. Moisture collects on the outside and frosts which makes it hard for the Velcro to stick if they go straight back in the freezer after use.
Good luck!
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I would suggest adding rubbing alcohol for cleaning the caps before putting them away and using cotton balls to wipe them down with the alcohol. You might also add an over-the-counter pain med for yourself about 20 minutes before you put them on. It helps alleviate the pain from brain freeze, which doesn't last long but I think most people do suffer this initially. I used a fuzzy fake fur blanket instead of an electric one. It worked great and I didn't need to find an outlet. Good luck!
Amy
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Thanks mfm48-- It really helps to know this is normal! I've been panicking.
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vg13 - I loved my electric blanket during the cold capping. I also iced my fingers and toes and ate popsicles during the Taxotere part of the chemo. I have had no issues with neuropathy or nailed damage and I never got mouth sores. I put some ice in snack baggies and put them in a pair of mittens and my slippers. Honestly, after the first cap, that was the hardest part~ You can get extra velcro bands to make the caps nice and tight around your head. If you don't' have them, pm me, I could mail them out to you. Also for last 3 infusions, I brought a soft cloth to put right at my forehead line under the caps (and flipped it up over the cap). I experienced freezer burn on my first capping- this protected the exposed skin that I hadn't covered with moleskin.
I've said this before, but it bears repeating - drink drink drink as much as you can during the chemo. It will help flush it quicker. And make sure your cappers knead, knead, knead every 10 minutes the caps are on your head. It spreads the cold to all the follicles more evenly.
You can do this and you will get through this!
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Hi lbrewer- I am having the same chemo treatment as you did and I used Penguin Cold Caps for the first time last week. Can you share more of your experience or tips? Thank you!
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VG13 - As you are going in NYC, I am assuming you are using a large hospital, have you checked to see if your hospital would accept a donated medical freezer from the Rapunzel project? Mine had, thanks to some wonderful cold caps user long before me (NY Hospital's Beast Center), and having it made using cold caps so easy as the caps stayed in the freezer during my treatment. There was no having to take them home in between treatments. I had the caps shipped directly to the hospital, nurses put them into the freezer, and they were repacked by my helpers and picked up from the hospital right afterwards.
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VG13 - just looked at your "signature" lines - are you getting 12 weekly Taxol + Herceptin? That's what I had, and the caps worked very, very well for me. I had essentially no shedding. It was hard to tell, because I was washing my hair only a couple times a week, but at the very most I would say that I lost less than 5% of my hair. I was worried that my helpers would have to "get it right" for 12 treatments, but that turned out to not be a problem.
Like Hortense and several others, my chemo facility had the medical freezer for cold caps. It made the process a lot easier.
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Daye,Woo-hoo! Must feel great to be done. Prayers and Hugs to you. You have beautiful hair in that pic, can't wait to hear your success story!!!!
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