Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks so much for the information. I was also reading about not be able to wash 3 days before / after. Did you feel the need to wear a wig-too dirty, greasy??? I am a teacher and will have 100 sets of eyes on me each day!!! Just trying to gather as much information!!!
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2 boys mom - I HATE the cold and can't stand to be cold and my biggest fear was I would not be able to tolerate the caps. I kept saying to my DH "what if I can't do it???". I took Ativan before chemo and they gave me Ativan in my drip. I did fine. It was not as bad as I thought at all! I was proud of myself for doing it considering how much I can't stand to be cold. What is funny now is that after chemo and going through menopause, I am always HOT! It's so strange because my hands and feet were always cold before. My husband is happy I don't have cold feet on him in bed anymore
As far as greasy hair...it was greasy the first several weeks and then it got far less greasy. I still only wash twice a week....it never gets greasy anymore. I wore my hair back a lot during chemo. I put it in a thin elastic headband for the front and then wore a loose ponytail in back. I did this because once my roots started growing in, I had to cover the gray at my part line and the headband kept hair in place so no gray really showed. I also wore some thicker lightweight cotton headbands to cover the gray at times...and a cute hat on occasion. When I returned to teaching aerobics a few weeks after chemo, no one in my class new I had done chemo. I still had my ponytail.
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2 boys mom, I don't think the cold or pain is any worse than child birth and I imagine you used deep breathing exercises to get through that unless you had a C section. I'm not prying I'm just trying to say the first five min are the hardest but with preventive pain meds you can get through it. I was so happy to not go bald or to have to wear a wig, it was worth a little discomfort. Good luck to you.
Amy
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The cold was tolerable for me. Really it was only uncomfortable for a few minutes. Kind of like when you first jump into a cold pool, but then you get used to it once your body temperature adjusts. it's certainly colder than a pool, but that's how it felt for me as far as discomfort.
Most shampoos contain Sodium Lauryl Sulfate, which while effective to striping dirt and grease, also can cause buildup on your hair and plog pores which contributes to hair loss. It also strips away the natural oils in your hair, which your body makes up for by creating more oil. So if you use shampoo, you need to use it every day. If you quit using shampoo your body will overproduce oil for 2-3 weeks and then start producing the right amount of oil. My hair is now smoother, less frizzy and more healthy. I no longer use any shampoos with Sulfates, and shampoo about twice a week with DermOrganics. My sister who has hair loss says she rinses her hair and uses conditioner but only uses shampoo once a week. I haven't tried that but I think it could be beneficial. Also, if your scalp is itchy or scales you can use apple cider vinegar to fix the problem. It's stinky but it solves the problem by clearning up the infection, removing the buildup and sealing the shaft of your hair.
I was loosing hair before chemo, which concerned me. The new habits I've learned since capping I will continue because my hair looks better with no products. If you have some time before chemo starts you can start your new hair care regimen now while you have some time to adjust to changes like no heat.
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2boysmom - it is bearable and it is worth it. It is only about 6-8 minutes of wowza before the scalp becomes numb. I had an electric blanket, a warm tea, and an ativan in my system before i started which all helped immensely. I agree with others who have said the ice on the toes and hands was harder to maintain. The hair is greasy for the first 2 weeks but afterward you wonder why you washed it so often. If you can, let it go now a bit to get it ready. I used soft headbands to hold my hair back and give it some style during the really bad hair day looks. After a while, I just decided not to worry that my hair looked limp and drab, It is what it is and its worth it.
Good luck with your choice!
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Long before I started with the caps, I noticed my hair drying as I aged. Friends suggested that I limit hair washing to twice a week. I thought it would be disgusting but as it turned out, my long hair never looked better, shinier or healthier. I loved my hair! And then I got cancer. I workout everyday and sweat a lot. Still, it's not a problem.
Realistically, the brain freeze is 8 minutes. Someone told me 5 but it's 8. Possibly 10. 8 minutes of screaming *!##%^*&^! And then it's a non-issue. I think 8 minutes of *!##%^*&^! is worth it for hair. And btw, I don't take any pain or anti-anxiety meds beforehand. I too found icing my fingers and toes to be far more difficult and I wear gloves and socks.
My daily hair update: It's hair washing day. If you don't hear back from me send in the Mounties!
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WW, do we need to send in a Hair Rescue Squad?
Hope the washing went ok. 0 -
Warrior...I use to threaten to take Xanax before washing my hair during chemo! You can do it...just look in the mirror and ask "do I have a full head of hair?" You will say yes - and that is your goal!!! Hang in there!!!
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Thanks everyone,
I would rather try the cold caps and find out I could not stand the cold rather than a guarantee that I would loose my hair. I didn't really have any problems using the cold caps and found it very doable for what it does. At the most, I took Tylenol because that is what they gave out at my infusion center and it did the trick. Because you only use them they day of treatment (some use it in between at home) it is very doable for anyone who wants to try it. If you don't like it like it then you simply don't use it the next treatment. Good luck to all.
Rhonda
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It seems like everyone agrees that the cold caps are worth it!! What is the best thing I can do now? Chemo date not set but port will go in on Feb. 20.
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2-boys mom - Order the caps now and talk with your rep! Have them air shipped as the ground deliveries are more likely to be a problem with the weather. You need time to practice. Get your capping helper(s) on board. Order / purchase all the supplies you will need - coolers, moleskin, pantyliners, thermometer, electric blanket, something for icing your fingers and toes if you plan to do that too and figure out where you will be purchasing your dry ice. I go straight to the wholesaler because the retail outlets cannot guarantee the amount I will need. Bed, Bath & Beyond sells condiment dispensers (ketchup tubes) and I purchased 3 for washing my hair. I may be forgetting somethings. And this is just for your hair. Talk with your MO about vitamins you can take and if you'll have neulasta and need Claritin. Ask about Biotin and Liquid Silica for hair and nails and get those too. I'm using Brian Josephs lash and brow conditioner. There are other things to consider for prevention and management of the other side effects and you'll want to stock up on what you need. I got everything together myself and realistically it took me a week of hustling. Welcome aboard!
Hair washing update: Hair is pseudo clean. 5 billion hairs fell out but I still have HAIR!
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Warrior_Woman
Which company are you using?? What type of shampoo? Congrats on the successful hair day!
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Who knew hair washing could be so traumatic? I remember being in a state of high anxiety whenever it was time to wash. It was always a relief when my hair dried and looked normal. Warrior, sounds like your hair is hanging in there!
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Please forgive my intrusion but I thought you all might find this article from the San Francisco Chronicle interesting. It's about the DigniCap study and features Dr. Deb Cohan (she of the famous/infamous pre-mastectomy Beyonce dance).
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Great article lekker - thanks!
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That is a good article- thanks fo sharing. I really hope that trial is successful. We had someone on here who was a DigniCap trial participant but I don't remember who it was or how succcessful she was.0 -
2 boys mom - I am using Penguin Cold Caps. I chose them because most of the women on here used them and those who did the TC had favorable results. They are pricey but I didn't want to try a brand that I knew less about. I'm using the Dermorganic shampoo and conditioner, again, because it was most often used and I don't like to venture out on my own. The one time I tried another product someone on here recommended, Joico hair reconstructer, it was a big mistake. You really need to place your order today. We're getting 18" of snow where I am and much of the east coast is shut down. I imagine you can delay chemo if it takes longer to get your supplies but who wants to do that?
JC - When my hair is wet I see my scalp in ways I've never seen it before. Once it dries it fills in. Day 30 and I have hair. I do hope the shedding slows down and I don't have even more shedding post chemo.
I recall a few women using the DigniCaps with success and only one who was disappointed with her results. I'm going on memory here. Chemo brain memory.
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I'm getting ready for the cold caps. From now on is a race against time. I'm getting anxious because I don't know if I'll have everything ready for the 20th. Will the caps be here? I'll go with the dry ice route, since the closest center that has a freezer is about an hour away (maybe more with our kind of traffic). And if I had gone there I would have to postpone my tx until the end of March. Can't do that, they already postponed it one week.
Thanks Warrior_woman and all cap users, I've read your comments and they've been helpful.
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WW I had the one big shed but I did not shed after every chemo and had no shedding at the end. You can do it!! Stay positive.
I have 2-3 inch hairs around my temples that I know are new growth- my hairdresser commented on them. the funny thing is, when I put my hair back they tend to stick straight up! This, I can deal with.
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tmb - I hope I'm having your pattern of shedding. When was your big shed and how long did it last? I believe Hortense posted that hers was between chemo 2 & 3. If it slows down I'll be fine. If it doesn't, Baldville here I come. I'm sure your hairdresser can help you with that cockatoo style you have going. LOL The regrowth stage is going to require some real creativity.
Sweetmom - Have everything shipped overnight if you can. I was in a panic when my caps sat in Ohio for 4 days because of the weather. I figured I'd save on the shipping costs and that I had plenty of time. I had not factored in the weather delays and that was a huge mistake. I did get everything in time but my anxiety was through the roof.
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Warrior Woman, I'm right behind you and having what feels like massive shedding too. I felt like I combed out half my head today. Hair washing day is tomorrow-ugh. Crossing fingers for all of us!
2 boys mom, I definitely agree it is worth it. The cold feeling isn't bad. Make sure you get a good neck pillow to support your head because the caps are heavy. Good luck getting everything in order!
Sweetmom, I was a wreck waiting for my caps but my rep was an angel and made sure everything was in order.
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i am on day 35 since my first of four tc chemo treatments
I have been using penguin cold caps,
I have had no hair loss on my head at all
Does that meai am out of the woods??
Has anyone lost hair after day 35???
Thanks
Mitchie
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Wow, that's great to hear, Mitchie! It sounds like the caps are really working for you! I'm about the same- completed week 5 of 12 weekly taxol/herceptin with very little hair loss. Like you, I'm kind of holding my breath and hoping that the more time that passes the greater likelihood that the caps are a success. Any veterans out there who can weigh in? Speaking of which, a huge, heartfelt thanks to everyone on this thread. Despite having an super helpful mom and somewhat helpful hubby
there is just no way I would have been able to undertake the PCC's without all of you & your words of wisdom!0 -
Hi Mitchie and summer, welcome. If you still have hair at day 35 past first chemo the caps are definitely working. You are out of the woods as far as the complete hair loss you would have if you didn't use the caps (as long as you continue to follow the protocol). That doesn't mean you won't experience some shedding at a rate that's heavier than normal. It's possible you'll have some shedding after round 2 or 3, or you might not shed much during chemo but then shed for several months after chemo is completed. Everyone's hair reacts differently but at six months PFC pretty much all TC cap users end up saying the same thing..."I'm so glad I used cold caps". Good luck
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anyone know anything about advance cold caps? Also, before using any cap, is it smart to dye hair before?
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Try to search the threads for the words advanced cold caps. I know people tried them but if I recall correctly with less success than Penguin. I can't really comment for sure so see if the search function can help find that part of the thread.
As far as shedding - I can tell you from hanging out on this thread and using the caps three years ago not everyone has the same shedding pattern. Try to just take a deep breath and take it day by day. Those people that did not use caps would be bald by day 35
Have faith!!0 -
2 boys - Have you watched the video? How it Works It is not advisable to color or cut your hair before using the caps.
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Ativan! That's the stuff. I just had my first round of Taxotere and used the Penguin cold caps. The chemo was nothing compared to the cold caps. It was awful every time I had a cap change until the nurse said, "hey, how about a little Ativan? I can just put some in the line." What a difference! And I spent 20 years living in arctic and spending many minus 20 degree nights in tents dog mushing and climbing plus skied every day and night in Fairbanks no matter how cold. But then, I have always hated jumping in cold lakes.
I found out about PCC on Saturday, Feb 8th when I sent an email, called Geralyn on Monday morning and she sent them out that day!!! Fed ex came through for me on Tuesday, the same day I sent a friend 2hrs away down to the pier in Portland Maine to get dry ice because I'd struck out locally. Meanwhile I got coolers, thermometer (which is very fun to play with around the house and horse barn!) and other supplies. Basically, 2 days of intensive phone calls (had to get Onc and Chemo rooms okay to use them, FedEx account set up, etc,), emails, running around, practicing the evening before and we were on it on Chemo Wednesday, Feb 12th.
I only had one helper and it would have been nice to have 2. The process with constant changes and all sure takes your mind off the junk they're sending through your veins!
Now I just hope they work. I have a weird shaped and big head so I used the gel headbands. I'm not sure we got very good coverage around the edges. Still thinking of having a wig fitting, just in case, and make up consult for eyebrows (even though mine are so blond they hardly show).
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I'm not sure I buy the not cutting your hair. I had mine cut because it was very long and I realized I could donate it and still have shoulder length hair and I wouldn't have all the pulling, braids, clips and ties, that go with long, heavy hair. Do your hair roots know that your hair has been cut? Does cutting your hair make your hair fall out? I think it's easier on the roots because the strands are not so terribly heavy and constantly pulling. I looked at European forums on cold caps and women who are successful with the caps cut their hair all the time.
JMHO
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michethevanquisher
Thanks for the info. I will continue to search. I just need it trimmed!
Warrior woman. I watched the video and agree with no dye-peroxide I am trying to decide between advance and penguin. Penguin is pricey!! I am going to look for a wig- just in case!!
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