Cold Caps Users Past and Present, to Save Hair
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Sorry to intrude....I've put up a post in the Freecycle section of BCO for three Elasto-Gel cold caps.......
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Here2win I washed (and still do PFC) once a week I find it too stressful on hair washing day because I tend to shed more on that day. I'm now 8 1/2 weeks PFC and shedding is slowing down so hopefully any day now it will stop completely then I will start washing 2-3 per week.
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Hi, can anyone give advice for nature_lover67, she wants to know about cold caps starts chemo in 2 weeks. Thanks
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Nature_lover67 try and send a PM to sebm9 she will send you a detailed email with information and tips about cold capping also check out Penguin Cold Caps website they explain about how to order caps and everything.
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My basic tips:
1) order the caps ASAP so you aren't stressing about them arriving on time!
2) look for a distributor of dry ice in your area - they are cheaper. Try https://www.continentalcarbonic.com/ and search for a distributor near you. If you are going to be wearing the caps for a long time due to your regimen or having a slow chemo nurse (I wore mine about 8 hours each time), you may want to get 100# of dry ice instead of 80#.
3) use 2 "igloo" cube-type coolers on wheels - look early - I almost couldn't find them - had to search various Walmarts
4) I found my infrared thermometer at Sears
5) To help you keep track of what # cap you are on (so you can re-freeze them in the proper order), put numbers inside each plastic box. My husband cut out 8 square pieces of cardboard and used that to mark the boxes. I guess you could just as easily put tape with a number on it on each box.
6) Get an electric blanket and use it - heaven.
7) Use a handkerchief or some type of soft cloth under your chin so the strap of the cap doesn't make you so cold and doesn't cut in under your chin
8) When putting moleskin on, don't get into the hairline. OMG, OUCH. Who wants to pull off hair after working so hard to save it? But don't go too far away...I got a spot of frostbite along the hairline when I overcompensated. Leave part of the moleskin adhesive on the moleskin near the hairline. It doesn't have to stick down there - just needs to cover your skin.
9) make sure you cover those ears - pantiliners do work well for this, lol
10) We used an additional strap over the top of the head and under the chin to help keep it tight. We didn't get one from Penguin, just used a velcro strap we had for holding icepacks on knees/shoulders, etc.
11) When removing the cap, only undo as few straps as possible - remove it like a helmet. This way, fewer hairs get caught in the velcro.
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I'll add-
During cap changes, use the palm of your hand to push down on the top of the cap while your helper is fastening the straps. This helps prevent the cap from popping up and losing contact with your scalp.
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I have lots of information on my blog and photos that my help if she has not checked it out yet. Also feel free to post any questions as you think of them...someone is always around to answer and offer advice based on their experience!
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Scarlett, your hair looks great! very natural! yay for cold caps :-)
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To those of you PFC did/do you find that your body is still acting how it did during chemo? During my chemo 1 week after each treatment I would break out in pimples around my chin they would then clear up just before my next treatment was due now 8 1/2 weeks PFC I am still finding that every 3 weeks I break out in pimples around my chin (only the left side as was the case during chemo and coincidentally the same side that had the breast cancer) like I did and it is the same time that I would be having a round of chemo? Also my hubby who is a hairdresser bought for me Nioxin Shampoo and Conditioner for chemically treated thinning hair. They lady at Hairmart said that this shampoo was designed by someone who had undergone chemo and was designed to help hair growth I know a few women on here used this also is using it at 81/2 weeks PFC with slight shedding a good idea or should I wait longer?
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Using cold caps for the first time tomorrow morning with my first chemo! Wish me luck!!
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Hi everyone, I am using PCC and just need a temperature check. I started PCC on 9/10 the same day as my treatment (TC x 4 every 3 weeks). On Day 19 and 20, I had some massive shedding, but no bald spots (yet). Is this normal to have this happen so early? I'm not sure if my hair can handle another massive shed after dose 2. Any hope for new hair growth during this period? I am following all the directions with regards to coldness, hair washing frequency, etc.
Any insight would be greatly appreciated.
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Good luck, tshire! Let us know how it goes.
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nature_lover67, great tips from dancetrancer and jc254.
My (very sweet) Continental Carbonics guy discounted the dry ice because I told him it was for capping. CC supports capping openly, so you might want to give that a whirl.
I would add to previous tips to make sure you wipe the condensation from the interior of the cap each time with a towel before you reapply. It's like a sweating glass once it comes out of the cooler. The only time I got frostbite was when we didn't make sure the caps were dry.
aj93, if you make it to day 18, you should be fine. Some people have a big initial shed. Some people shed slowly over the course of chemo. Some shed after. You may notice more shedding around the nape of your neck and over your ears and the sideburns because of cap-fitting issues. This shedding will be more intense and like real chemo shedding. Take it in stride. As long as the rest of the hairs are coming out in a diffuse fashion and not clumps, that's normal. (If you run your hand through your hair, you'll get a few strands maybe more, but they're well spaced. That's normal. And it will seem like so much hair sometimes, but you have a lot of hair and believe it or not, it will still look fine.) You will lose around 30% give or take. It's subtle for the most part. (Except those edges. You just have to not worry about that. Those parts started growing in while I was still on chemo.) You may have other regrowth elsewhere before chemo ends, but mine started in earnest about four to six weeks after and now five months PFC is going nuts. It doesn't all fall out at the same time, so it grows back in pretty much the same order. Some bits are 2.5 inches long now. The hair that fell out toward the end is around half an inch. It can be pretty nerve wracking, but capping works. I don't know if you've seen anything about using Toppik to cover spots (especially in the part/crown) that thin a bit more, but it's a great way to get through the worst of the thinning without feeling self-conscious. (One more tip: make sure you're getting good contact on top and at the crown. It's worth the couple of seconds to refit the cap if it doesn't feel like it's making good contact there. That's where mine thinned the most.)
Aussiegirl, it really is better to wash your hair more often. It prevents buildup in the follicles, which will slow regrowth. It's hard to control buildup after it's taken hold. It also feels like you're shedding more when you wash once a week because you're concentrating the shedding into one episode. Relax. Wash two to three times a week at least to keep those follicles clear. Your hair will grow faster. Your scalp will be happier. Nioxin is safe at eight weeks PFC. I started using it at around five. And I started washing daily around then too (which many people don't, but I had no ill effects). Even the PCC folks recommend washing more often than once a week (except on chemo weeks).
Good luck shire! You can do it.
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Good luck tshire. Remember to take some kind of pain reliever before the first cap. I used Advil and some Ativan but anything will do. The first cap is really cold but stick with it. After about 10 minutes your scalp freezes and its much more manageable. I hope you find, like I did, that chemo is not nearly as bad as you imagine it will be.
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pch - thanks so much for the insight and information! I really appreciate it. I feel like I have some hope now. I was a bit (well, more than a bit) freaked out about it. Thanks for the tips too! I remain hopeful.
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pch, that was an awesome recap!
aj93, I experienced my biggest shed during about the same days you did...I think a lot of it was due to the cap not fitting tightly enough around the ears and nape of neck, plus I lost some on the crown, which I also think was "new user error" and due to the cap not fitting tightly enough on top. Oddly enough, I never pulled out a lot of hair, didn't find a lot of hairs in the sink or comb, it just seemed to disappear or float away almost overnight. Never figured out how I lost it so fast or where it went. I also had some shedding after treatment 2, but I never had that same degree of shedding that I saw from days 17-21 again during chemo. It was a little frightening, but I started to breath a little easier once treatments 3 and 4 produced very little shedding. I really didn't relax and believe it was working till after treatment 3 :-) Hang in there :-)
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Good luck tshire. I found the 1st couple of caps were a little more painful but only for the first couple of mins after that I was fine I didn't need to take any thing for it. Chemo itself was doable I had 4 rounds of T/C every 3 weeks I only felt off for maybe 3-4 days after each treatment then I felt better until next round. For me at my worse it felt like morning sickness (which I had for the whole 9 mths with each of my 3 children). The 9 weeks did go by very quick and soon you will be on the other side.
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wildflower, thank you for the note. I remain hopeful. I will definitely be more attentive to the sides and neck area when I go in for my 2nd round Thursday. Staying on the positive side.
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I had my first of 4-6 TC treatments on September 17th. I am using Chemo Cold Caps with success, so far! My greatest concern has been the in between care of my hair. I have been doing alot of research and was very happy to find this group. I was due for a highlight the week of chemo, but did not want to delay treatment, so I cancelled my appointment. There are definitely days I regret that decision. Ha! I am following all the rules, to the best of my knowledge, and am wondering if anyone used any kind of temporary color (just to break up the regrowth) during treatments. I spoke with one person who mentioned some kind of spray in color. Any advice for a newbie is welcome! Thank you!
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Hi Elw67-
We just wanted to welcome you to our community here at BCO. We hope you find the support and advice you're looking for. That's great news about your cold caps being successful thus far! We wish you continued success for the remainder of your treatment.
The Mods
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elw67, I used Style Edit to help with root color. It comes in a small aerosol spray bottle in a few different shades. The color washes out and didn't run or streak when I would exercise. At 5 weeks PFC, I used a non-permanent at-home hair color and just applied it to my more gray areas. I repeated it again around 10 weeks. I am scheduled for my first professional color on Saturday which will be at 14 weeks.
Sending you positive thoughts for tomorrow Tshire!
Aj93, pch was spot on with what she said. If you are not losing clumps or have bald spots at this point, you are doing great! You will lose hair - lots. You will think that you can't possiblyhave enough hair to make it through, but you will!
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elw67, another color option is Color Wow, which is good for roots, growing-in gray sideburns, etc. It is a powder that you brush on and it stays put between washes. I don't know what it's like in a sweat situation, but it covers well as long as your grays aren't too grown out. Toward the end we all just sort of endure that part. But like Angie says, you can color not too long after you're done. It will all go by much faster than it feels in the moment sometimes.
aj93, there's not that much you can do about the edges. It's just the way the PCC caps are shaped when they're velcroed on. (The gel areas are so thick that you'll likely never get a tight fit at the edges.) For most of us, the rest of our hair covers those spots well and we just don't put our hair behind our ears or in ponytails or anything. Shine that loss on and concentrate on the rest of your head/crown/front hairline, and the back "corners" of the crown as best you can. I have heard that some women use extra gel bands at the edges, but that seemed like too much more cold to me and the hair was gone at that point anyway. Good luck and hang in! Sounds like you're doing great!
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anyone know of something for eyelashes?? Mine have always been pale and stubby at best. They started coming in, then fell out again...something other than Latisse??? Anybody ?? Bueller?
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Sula, I use Lumigan and it works really well, but I think it's got the same active ingredients as Latisse. My eyelashes came in super thick, then thinned a bit recently. I think I heard at some point that the cycle has to normalize. And I'm pretty sure we were treated at roughly the same time, so that might be what's happening.
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Hi Sula, as you know I'm a big believer in Latisse; however, I am also one of those unlucky ones that tend to get a red line on my eyelid from its use...some type of irritation I guess. Anyway, I just bought & started using Givenchy Mister Lash about 2 weeks ago. The reviews on it were pretty decent so I thought I'd give it a try in order to lay off the Latisse. So far, no irritation but it's also too soon to tell if it's making a difference. Maybe give it a shot or read up on the reviews & decide? You do have to apply it twice a day compared to only once with Latisse and sometimes I forget...
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Suladog, I use a mascara with fibers in it that give them an illusion of being longer.
http://www.maybelline.com/Products/Eye-Makeup/Masc...
Then I apply a different mascara to thicken them, as I find the Illegal Length doesn't give them much volume, just more length.
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I am using Brian Joseph brow and lash conditioner. I am 21 days post dose 1 with TC. I have seen very little loss thus far. No growth but I still have them. It runs about $48 per tube. No irritation experienced to date.
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Hi ladies, I had my first chemo today. It went pretty well but I'm a little worried about the temperature. I got the recommended 80 lbs of dry ice and layered the caps like I was told, froze them for 3.5 hours before infusion started. But the thermometer read -18 for the first cap and then somewhere in the -20s for most of the other caps. We tried to keep them in longer but there just wasn't time and it didn't seem to really matter anyway. Will it be ok?
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Sula, I've heard of castor oil for lashes and eyebrows, but I have not tried it myself
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Hi Tiffany,
Glad you got that first chemo over and done with!
I remember someone saying that there is a little bit of wiggle room regarding the recommended temperatures, but I don't know the exact range. You might want to ask Geri (the Penguin rep) about that. What I did that seemed to work really well in getting the caps down to the right temperature, was layer and freeze the caps in their plastic boxes on dry ice for about 4-5 hours before the appointment. They were usually a little too cold when we pulled them out. We just kneaded the cap and let it sit a few minutes until it warmed up to the correct temperature before putting it on my head. However, once a cap was used, instead of putting it back in the plastic box, we put it inside an extra large 2-gallon Glad zip lock bag and laid it directly back on top of the dry ice in the cooler. They seemed to freeze much faster that way.
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