Cold Caps Users Past and Present, to Save Hair
Comments
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HapB--I totally agree with PatinMN--if you can delay the start of your treatment so that you can cold cap on the 1st treatment, you will have the best opportunity for good results. Patin MN and I both did 12 weekly taxol/herceptin every 3 weeks, and we both lost very little hair. We also both used Penguin.
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Sherry, you look beautiful ! Feel good and hope the rest of your treatments so smoothly.
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HapB - I'm using Arctic Cold Caps and so far, I've had great results. I've had 4 infusions out of 6 total of Taxotere and Carboplatin, and I estimate I've only lost about 10 or 15% of my hair. I found their customer service to be extremely helpful and I love that they include everything you need in the kit they send. It also helps that they're over $100 cheaper per month than their competitors.
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hi everyone, I thought I would check in with my results. I am using the dignicap. Day 21 and completed the 2nd infusion today. I noticed lots of shedding in the last 2 days. I need to pick the hair off my clothes all the time. I really hope I can keep it. I had a double mastectomy and don't want to be boobless and hairless. I hope everyone a great success in this experience
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hapb.
Can you find a place that uses the dignicap and maybe get financial aid? Dignicap you don't need anything or anyone the nurses set you up and the machine circulates the cold to keep you between 20 and 32 F. If you have to pay, mine is $450 each session, I only need 4 cycles so far. I have 4 brothers and several nephews and they are sharing my costs. I wouldnot be able to without their help. I works out that I charge it on a credit card and the payment is not due till the next month so it is 450 each month due on the 24 th. I hope you can work it out. Good luck, I am praying for you to find a way.
Btw,
I did not qualify for the financial aid they offer. I make $100 a month too much on my pension.
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HapB--There are so many things to think about now, and so happy to hear that you have a good support system, willing to travel from out of town to help you out! Why don't you ask your Arctic rep's opinion as to whether it is worth your while to start capping after the first session? You could also call Penguin and tell them your situation and ask for their opinion? Good luck with everything, and I will be thinking of you tomorrow! PS-you can buy a rolling cooler to deal with the weight issue
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HapB - Where in MA are you located? I'm in NH, but I get my dry ice from a company in Malden.
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HapB- I have just completed my 12th/18 carbo/taxol. Feel free to refer to my pictures... I have probably lost 10% of my hair. I have hair to my waist and the ends are still thick. Weekly taxol is definitely the most successful protocol. I used penguin cold caps.
If you didn't cap on the first round, I would surmise that you would lose a bit more, perhaps around 50%. If that is still worth it to you, you should proceed.
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hi yesterday was my first chemo i did 8 hours of cold capping what a work for my husband,l i did nor take a medicine for the nausea before the chemo so in the afternoon i felt pretty bad, sleeping while my husband changed the caps but i think it is worth it.
Penguin deliver the caps overnight so maybe you can do it Hapit. The company that i bought is in USA and Canada. My husband pick up at 7 am the ice we arrive at 9 at the hospital my appointment was at 10 so we made it.
The name is Continental Carbonic. I hope it will helps. Good luck!
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HapB:
i get treated at MGH in Boston and have been using Cold Caps. I am on CT. I had my 2nd infusion on Monday. We are getting our ice in Cambridge at Acme Dry Ice. http://www.acmedryice.com/ We've been stopping there to pick the up the day of treatment before we head to the hospital.
Toppik is to cover thin/balding spots. I just started using it. Seems to work pretty well. I purchased it at Ulta. I bought the spray applicator also so I could get more control of where I'm using it. They also sell it at Target, Walmart, Sally Beauty etc. https://gettoppik.com/
Good luck!!
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Questions for you ladies :
I just got a script for Perjeta, Herceptin and abrazane. I was told I would have six rounds of Perjeta and Abracane and 17 infusions of hercepti. I had cancer in my left breast, 2.3cm 1.3 cm 0.8 cm and 0.5 cm no lymph node involvement. I want to cold cap - is this possible. I asked the dr and nurse and they said no problem although they have never done it before. I am assuming I wouldnt have to cold cap for herceptin. Any advice you could give me would be greatly appreciated. Thank you!.
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KCMC, abraxane is the same as taxol, just mixed in a different solvent that doesn't cause allergic reactions like taxol can. Weekly taxol does really well with cold caps - most people lose only a very minor percentage of their hair. I lost no more than 5%, if that. Herceptin doesn't cause hair loss. Not sure about perjeta, but I think it doesn't cause hair loss either
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KCMC - PatinMN is right, Perjeta doesn't cause hair loss because it's a targeted therapy. I only cap for Taxotere and Carboplatin. I'm 4 infusions in (out of 6) and I've only lost about 10 or 15% of my hair.
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I'm so frustrated I'm in tears. I am 9 days PFC/4 x TC and my hair/scalp is a disaster. Never mind that I lost 60% of my hair and have a huge bald spot running from ear to ear over the top of my head, I also have the worst itchy flaky scalp. I can't even feel good about the hair I have because I have flakes everywhere. I am washing every 5 days, washed this morning and everything is flaking again. Even the bald spots are flaking.
I have tried 4 different shampoo conditioner combos. I have Alra, Acure Moroccan oil and lemongrass shampoo and conditioner sets (orange and green ones ) and two weeks ago got this. https://www.amazon.com/gp/product/B016NEOL8I/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
Nothing is working and I am fussing with my hair too much to get the flakes out not to mention the itching I can't take Benadryl because it makes me dopey and the Claritin doesn't work. I stopped using the dry shampoo and toppik 3 weeks ago, that hasn't helped.
HELP! I almost feel like just dousing my head with some sort of oil and just putting a cap on but I'm scared of damaging my hair and doing something that would prevent regrowth. I'm scared, I haven't even gotten past the shed period for the last chemo and from what I'm reading I have months to go before I'm done shedding and I'm MISERABLE
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Mquara, I'm sorry you're having so much trouble. I don't have direct experience, but others with flaking used apple cider vinegar and said it helped. dancetrancer said she was told by the Penguin rep to mix 1 or 2 teaspoons of apple cider vinegar with her shampoo. You can do a search for "apple cider vinegar" in the "managing side effects..." forum, and you can read about people's experience with it. Worth a try! Good luck.
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Mquara, I had the same flakeexperience! Dermatologist gave me hydrocortisone drops and it went away. There is hope! Do u have a good dermatologist?good luck!
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4-5 Weeks PFC update and photos!
Hello lovely ladies here. It's been a while since I posted, as life is coming at us hard and fast since chemo ended. However, I thought I'd share how we are netting out now that it's been more than four weeks after my final chemo session.
After 6 rounds that included 12 sessions with Taxol and 6 with Cisplatin, it's safe to say I've retained about 80% of my hair (I had a lot to spare).
We used a DIY kit with 5 Elasto-Gel caps on loan for free from a local cancer support center, and we were very conservative with timings (45 minutes prior to infusion, 3 hours after infusion, 20-25 minutes between changes).
All I have to say is if you are on the fence about doing it, GO FOR IT. I know your mileage may vary, but the overall experience was so positive, I truly believe it had an impact on the overall success of my treatment. On "off" weeks, I could go out and do things without a second though as to my appearance, and, most importantly, when I woke up in the morning, I didn't see a sick person in the mirror. Even better, neither did my husband. This was huge in helping us maintain a positive attitude throughout.
Unexpected results include the near total loss of my eyebrows and eyelashes WEEKS after chemo ended. Oh well, those at least only have about a half inch to grow back.
I just wanted to say a huge THANK YOU to many of you on the board, especially as we got started back in January. Having to do this on my own, you were a huge help and support for me to try this out. And boy, are we ever glad we did
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thank you soc fan and paying mn! I really apppteeciate all three advice!
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Hapb, your cold cap compnsy can call around to help w the dry ice.Arctic helped me. Call them ASAP.
Lizjo you look awesome so happy for you!!
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Awesome another successful case make me try harder what is coming. 5 more of FECD a tough one. I did the first one with 9 hours cold capping every 25 minutes. I was very tired. Lets do it. ! Keep hope girls.!
Have a nice weekend!
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Lizjo! You look fantastic!!! Thanks for sharing your results with us!
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HapB,
I am single and doing the cold capping as well. I found a local dry ice place and there is also a grocery store chain that sells it. The local place sells for parties and to grocery stores so I bought at the source and they give me a discount as well. Nice! I googled and found some places close by but there hours were not convenient.
I did also find that I could buy the ice a few days ahead of time and it lasted (did not evaporate) very well. I stuffed the cooler with an old blanket and I lost just a tiny amount so that might help you in your planning of it. PCC say's that you should buy a ton more ice if you are not using it right away but I did not do that and did just fine. So for 40 pounds as my regular purchase, I bought 45 pounds and had plenty 3 days later by stuffing the cooler. I can lift a 45 pound cooler by myself out of my car trunk though. Cold capping takes a lot of planning and energy but is definitely worth it if you can figure out the logistics.
Hope this helps!!
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Lizjo--WOW! Beautiful!! So jealous of your straight hair too! Thanks for sharing the photos
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Does anyone have experience/know about using Nioxin shampoo/conditioner? My sister has a friend who has lost her hair 4 times now with various rounds of chemo, and she swears that it is great for regrowth and healing chemo hair. Thanks
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Fast Girl - not sure about the shampoo with Nioxin, but it's probably worth trying. I have been shampooing with Avalon shampoo, but today I might try the Acure again to try to really clean my scalp. I am considering taking Evening Primrose Oil for hormone balance and hair regrowth. Really considered taking Biotin in a high dose, but I read that too much can cause severe acne. I use castor oil on my eyebrows with good results and currently have a lot on my head and I'm wearing a plastic cap over it for 2 hours before I wash it. I am doing the castor oil in particular to try to get the corn starch crud off my head. Still taking Viviscal - 2 pills per day.
Remember the old shows when a boy would ask a girl out on a date, but she didn't like him? She would say she couldn't go because she "had to wash her hair". The concept was foreign to me until now. These days, several hours on either Saturday or Sunday is devoted to hair care.
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HapB - thank you! Also, don't let the dry ice issue stop you. Once you start looking, you'd be amazed how many places carry it or can deliver. One place that came up in a quick web search that delivers, and may be able to coordinate delivery on your days: http://brooklineice.com/products/dry-ice . Also, Acme, mentioned earlier seems like a pretty organized outfit: http://www.acmedryice.com/dry_ice_products.html
However, it may give you peace of mind to get a delivery or pick up closer to home before you leave. My dry ice company gave me a generous discount once I told them what it was for. Because I had back-to-back days of treatment, I would get a delivery two, sometimes three days before I could use it, and as long as I kept the rolling cooler stuffed with no extra airspace, I had plenty to use by the time I needed it. As for transporting on your own, I had to go in solo a few times before my husband could get off work and meet me. I got this cooler, and found it was still possible to maneuver and lift (barely) on my own with 50# of ice in it: https://www.target.com/p/igloo-ice-cube-153-60-qua...
You can do this.
Good luck!
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I have a question for the Taxotere/Cytoxan girls. When did you lose your eyebrows and eyelashes?
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Look at the ladies here, they did great on taxol! The docs don't always know. Mine said taxol would be worse and it is definitely not. AC is for sure hard but you are not getting that.
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HapB- You were most likely on a drug that did not cause hair loss. I've corresponded with hundreds of women on taxol, and those who did not cold cap experienced dramatic shedding at best, and complete baldness at worst. Taxol is the most successful protocol with the cold caps. Without the caps, I would not expect to keep your hair.
Lower stage cancer does not necessarily correlate with "lower dose chemo". If you are serious about keeping your hair, I would use the caps!
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I'm 11 days PFC and am waiting for them to fall out. From what I am reading TC people can lose eyebrows/lashes weeksafter the last Chemo
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