Cold Caps Users Past and Present, to Save Hair
Comments
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Aussiegirl,
I'm 12 weeks pfc, and I have been washing my hair every other day or so for several weeks now. My dermatologist said it was ok to do so. She said that it is a myth that washing your hair in itself causes it to fall out, and that what we see in the sink is just loose hairs that had already come out, but had been caught in the rest of our hair and didn't fall out on our clothes or whatever. According to her, the washing just removes those loose hairs that were already trapped in the rest of our hair. Of course, we need to be as gentle as possible during the washing and the combing out.
During chemo, I stuck with the Penguin protocol for the most part, because it totally made sense to lay off the usual routines, given that the hair was under extreme stress during that period. A few times, I washed more often than recommended if I was going out or whatever. But I've come to believe that no matter what we do post-chemo, a certain amount of hair is just "doomed" to go, whether it's through post-chemo shedding, additional surgery, etc. How much hair depends on the individual. The luckiest people are the ones who had thick hair to begin with. As long as we take our time combing out and detangling, I think more frequent washing than every four days is actually better for overall scalp health. I just can't see how greasy, oily hair that coats the hair and attracts bacteria can be good in any way for the follicles. Even Penguin recommends washing more often than 4 days post chemo.
Regarding the long, thin hair - I'm thinking that once I get a few inches of regrowth and the hair thickens up over the scalp, I'm going for a shoulder length bob to just make those long thin ends go away. Before my diagnosis, I had briefly wondered how a bob would look. Maybe I'll be finding out in two or three more months
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Everyone, I wash and blow dry every day and I have been since about 6 weeks PFC. I agree with Wildflower that a certain amount of shedding will happen no matter what--and always has! But who ever counted their hairs before? I think normal people lose around (correct me if I'm wrong) a hundred hairs a day. We're losing less because the pace of shedding older hair was hastened during chemo so we have less to lose (in the twisted logic of this new reality). So wash your hair everyone! Your scalp will be so grateful. And Wildflower, cut it! I've cut at least six inches off of mine PFC. It grows so fast I can't not. I go in once a month and have an inch to an inch and a half gently trimmed. We'd all look like crack whores if we didn't cut it. And you know what? I also flat iron the wavier regrowth to make it blend with the (heavier) longer hair. Go look at my picture. Stop being scared. It's fine! (Obviously you might want to experiment at your own pace, but truly, you need to stop being afraid now if you're so far PFC.)
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PCH, I just started cracking up laughing over my keyboard at work. I totally looked like a crack whore yesterday! I washed my hair today and I am a little less crack whore, more pot dealer.
Day 26 since my first AC chemo round (two more to go, plus four Taxol) and I still got some hair on my head. My hair is much thinner and I got bags under my eyes from the whole chemo/cancer patient thing but every time I turn around somebody at work is telling me how "great" I look. We are on the front lines of showing the world that we can get through this thing and not look entirely bald/sick. Badge of courage, ladies! I will have to have a mastectomy after chemo (after two failed lumpectomies) but I'm thinking ahead to when I can once again beat young guys half my age in a six-mile run. That person is still inside me!0 -
I AM IN MY 3RD ROUND OF AC FOLLOWED BY TAXOL! DID YOU DO THE T WEEKLY W/ THE CAPS OR EVERY 2 WEEKS?? I WAS WONDERING HOW LONG I WAS GONNA HAVE TO WEAR THEM.....AND UR RESPONSE MAKES ME LESS THAN "THRILLED" I WAS HOPING IT WAS LESS.... IM NOT LIKING IT ANYMORE THO I HAVE NOT LOST REALLY ANY HAIR SO FAR!!!
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malonejen- I got into the NYC marathon last March by lottery. In May I was diagnosed with breast cancer. Two surgeries and four chemo treatments later I ran the marathon on Nov. 1st. So while you may not be able to PR while going through treatment, you can still run. It made me feel much better staying active. You just have to see how you feel as you go.
I took a good look at my hair today before leaving for work and decided it doesn't look too bad. I would like the shedding to end but I have hair which I am grateful! And I washed my hair everyday throughout this whole process. I was very gentle - used baby shampoo and minimal brushing. I also used a blow dryer but didn't brush it as I dried it - just kind of fluffed it about. It worked for me. I don't think I lost anymore hair due to washing.
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Thanks for the advice ladies I'm at that point now that I'm about to just break down. I honestly thought I'd end up with better results than I have (if I put my hand behind my long hair I can see it its that thin) I may have to go with a chin length bob soon which isn't something I'm a fan of on me looks great on other people but I've never liked short hair on myself. Just don't know whether I should just cut it or wait it out and just wear it back for a few months suggestions anyone? I'm definitely shedding less now even shedding less than before chemo but every hair I lose is a hair I don't have just waiting for the day I wake up and no more hairs come out think I will do a happy dance.
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Aussie, how long is your hair? Mine looked very thin too (to me). But if you take off 2-3 inches in a nice blunt cut, it looks much better. Just remember back to the days when you were overdue for a cut and it looked straggly. Right? My stylist cut it dry. I was all, No layers! I only have one! We've actually laughed a lot over this. But she still said she was shocked at how good it looked even while she was making fun of my underlayer. Go blunt. it will help. If you still feel you need to do a bob later, you always can. I also got away with a couple of little wispy pieces around the face to make it feel like I had some sort of a style.
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Aussiegirl and pch,
I agree about the gentle trimming being necessary. I already had one trim about 1.5 inches done at 3 weeks pfc. It looked so much better and the blunt cut made it look a little thicker. It's past time for another trim, but my stylist is booked solid due to the upcoming holidays. So I have been trying to hold out for another 4 weeks when we're going to try a few foil highlights. At that point I will be very close to 5 months pfc so I'm hoping that enough time has passed to resume coloring. I may try a shoulder length bob at that time. We'll see :-)
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pch
I have cut my hair to just on my shoulders. My hubby is a hairdresser so he did a blunt dry cut and it did look better but the last few weeks not so much. Maybe it is growing and I need to just get another trim. Thanks ladies for your support its much appreciated.
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Hi everyone, I start chemo on December 3rd and will be using the Artic Cold Caps. I found them to be a little less expensive and they also give you a lot of supplies. I sure hope it works my son is getting married in February would be great if I could keep my hair. This is a good thread and I hope I can come here for advice, I'm really nervous about this.
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Aussigirl, How nice to have a hairdresser/husband in the same houes.:
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Welcome Lemint! Stay here for support, but do check out the FAQ thread for newbies, if you haven't seen it already!
Cold Caps FAQ's - newbies - how to save your hair from chemo
Also, you may find our success thread inspiring!
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Thanks Dancetrancer
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Dancetrancer - awesome job on the FAQ thread for newbies. You are an angel to have taken the time and effort to put that all together!
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Hi everyone,
I just started chemo today and am doing 12 weeks of taxol with herceptin. I purchased the Elastogel caps about 6 weeks ago, gathered all my supplies, did all my research and was ready to go. Unfortunately, we ran into fitting issues that weren't a problem during the dry run. The caps didn't stay cold in areas, particularly the side, and the fit was bulging on top and didn't give good contact, even with the bandages aND extra velcro straps. Also, by the third cap change I started getting extremely nauseous everytime we would put a new cap on, and it would last for about five minutes.
We've decided to abandon the elastogels and go with Penguin for the remaining 11 treatments, but does anyone have an idea of whether I should plan on losing so much hair from today's disaster that it won't even be worth it? Also, has anyone had the nausea issue and found a way around it?
Thanks so much for any feedback. I'm so nervous and discouraged now.
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Apuelo504, I had some trouble with fit on the elastogels as well and found that using pellet ice in plastic bags fitted all around the caps and inside the caps, and placing cheap plastic bowls inside the caps to help them hold a shape close to the shape of my head was the solution. After having this fit problem during my first infusion I lost a lot of hair from the top of my head, (where we had the problem) so much that I need to wear a baseball or other cap to go out in public. I still have the rest of my hair so at least do not have that cancer patient look. You will know within 2 to 4 weeks what loss you will sustain from the first infusion. I did not have nausea from the caps so cannot help you with hat one. Good luck!!
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Hi Lemint
Yes it is good having a hairdresser as a hubby but he doesn't usually do my hair😂😂😂 my friend does but at this point he's the only one I trust to touch it for now. I hope your treatment goes well for you and I'm sure you'll have hair for your son's wedding. If you need any questions answered we'll be more than happy to help you out although with the time difference for me I'm usually a day behind everyone else😂😂
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Hi, quick question. How long does dry ice last in the cooler for Cold Capping. The only place local sells it in blocks. They did say that they would break it up for me. I don't think it comes in pellets around my area. Would that be work?
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PatinMN, thank you so much!
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blocks were fine for me, I got 100# because I had to get my dry ice the night before chemo, around 4:30 p.m it kept the caps cold enough until about 7 or 8 p.m.the next evening. Sorry for typos, on my phone.
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Yeah dry ice apparently stays frozen for 48hrs as long as it's in a cooler. I had to get my dry ice the night before for a couple of treatments and we didn't have any problems although I did go through treatment during the winter.
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Very excited - my hair on my body is growing....ok, it isn't my head but it has to start somewhere!
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Hi, Lemint.
I had to get my dry ice about 4:30 the day before my chemo. I didn't use pellets. I used to get blocks that were about 12 x 10 (approx.) . I liked those better. I would leave the dry ice in my coolers with a towel on top for insulation in the air conditioned house. Early the next morning I would load my cooler by putting two blocks of ice on the bottom of the cooler, then 2 caps, 2 blocks on top of those caps, then more dry ice. My chemo was early the next day and I never had it melt.
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Hi, Suzanne50.
I remember that so well! One day before you know it, though, you will run your fingers through your hair and feel tons of stubble.
I had no idea how much hair I had lost until I felt is growing back in!
Lynda
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Hello, Apuleo504.
If I were in your shoes, I would definitely continue using the caps. At least for the next few treatments to see where you are.
I also got sick to my stomach for a few minutes after each cap change. It was worth it, though. For sure :-)
I wish you lot's of luck :-)
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I went to hairdresser yesterday for a trim. She definitely felt my hair was a bit "fragile" and to wait for color treatment which I agreed. I read on another board that hair starts growing back at 8 weeks so am hoping that holds true for me. Shedding seems to have slowed down at 7 weeks PFC
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MadisonMom, I'm glad you're hanging in there and found a solution to your mechanical problems. You may have to mess around with styling, parts, Toppik, etc. on top for a little while, but I think you'll be happy with your decision to continue. It's much less to have to grow in later. Wishing you the best for your remaining treatments. pch
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Hi, can anyone share the experience with the Penquin Cold Cap Company? I read the website about ordering info. do they ship the caps with dry ice to you or just ship the caps and you have to buy dry ice on your own. I'm on weekly Taxol.
For those who use cold caps, was it troublesome that you have to change the caps every 30 mins? Does it interrupt your "chemo rest" because I know some people get Benadryl as premed.
I'm just curious about the process itself. lots of you share the experience on hair growth. I'm just wondering about what's is it like on your chemo day with cold caps? I assumed you would bring lots of stuff to chemo like cooler...etc.
Thanks!!
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Tesla, I also did weekly taxol. My chemo facility had the medical freezer, so I didn't have to worry about dry ice. Penguin doesn't supply anything but the caps - you have to buy your dry ice, rolling coolers, infrared thermometer, etc. there is a fantastic thread with helpful hints about what you need - look back a few posts for the link.
Cold caps made for a long day, but it was a distraction and it was great having two friends with me each week. Yes, the Benadryl made me sleepy - we set an alarm so we wouldn't miss a cap change. The first five minutes or so of each new cap was fairly painful, at least until my head froze - then you don't feel it as much. For some reason the second cap of the day was the worst for me. Make sure they run your herceptin after the taxol - your herceptin time counts as part of the four hour post-chemo capping time
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Tesla - here are the links to the newbies FAQ thread and success stories thread:
https://community.breastcancer.org/forum/6/topics/...
https://community.breastcancer.org/forum/6/topics/...
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