Cold Caps Users Past and Present, to Save Hair
Comments
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I use Hair Rules hair system. It is paraben and sls free. He has an amazing moisturizing cream. A little goes along way. The shampoo is almost sudless but it really works!
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Thanks Mom. Yep, I'm using the liners that were provided with the Elastos so guess I'll ditch that idea.
NMoss - how was your treatment yesterday?
Yesterday and today, LOTS of shedding but still no clumps and it does seem to be slowing down...if it doesn't, well, lets just hope it does.
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I used Elasto Gels and used the liners that were provided and kept my hair,,,,.each cap is researched and tested to perform with the guidelines that are provided...Please do what you feel is right for you, but know that each cap works a bit differently...
My shedding was pretty heavy after the first infusion from days 17-24...after each treatment after that, it was around day 14 that I had consistent shedding...never any clumps, just shedding...I had shedding around my ears and the nape of my neck and those hairs about about 3 inches long now....Yikes! I have side burns!
I'm over 13 weeks PFC and have normal hair shedding..I just started using warm water at 12 weeks PFC and am washing 2-3 x a week....
I'm wanting to use hair color, but my nerves aren't quite up to it yet....so I still just pull it back and wear a cute headband or hat (because I want to, not because I have to!)
Have a great day ladies!
"Hair today....not gone tomorrow"!
Tori
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Hi, ArleneA
It looks like your hair is long and thick like mine, I go for treatment number 2 tomorrow. I have had a lot of shedding I lost about 25% of my hair and I have not even made it to my second treatment . I also have bleach blonde hair and a lot broke off frome being to cold. At this point I still have hair, but hoping this is the worse shed and the rest are way less.
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Hang in there girls...I am trying to hang in too! I have chemo #3 tomorrow. I have had shedding but all still looks normal. I lost a little in the side burn area but I am Italian and probably had too much hair there to begin with! (LOL!). To everyone else it looks normal...other than the lack of style. The roots are gross...the Colormark helps but I am going to have to start covering way more because more gray is coming in. I have at least a half inch (probably a little more) of roots and I last colored hair 10 days before chemo (which I started on 3/2). So my hair continues to grow through chemo which seems nuts but I have the ugly roots to prove it. I don't know how I am going to last with roots for a few more months before coloring.....ugh! I know it's hair, but I have dark brown hair and my gray looks more white/silver. It is obvious if I don't use colormark especially as I have one area that is very solid gray - like a streak so I part my hair on the opposite side to cover it up but as it gets longer it will be harder to hide........I can't wait to color even with the wash out stuff that is no amonia/no peroxide. I know I have to wait a long time to do that, but it will be a good day when it happens......
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samdobbs--yes I hear some rads Are longer it is around 30 -34 per patient---yes I have weekly herceptin--hope after this week I will graduate to every 3 weeks till my year is up--also I have to take tamoxifen for 5 years---
Hang in there ladies who have not completed chemo! The end will come fast--it is never fast enough for anyone but at least it will come down to the finish line with hair!!
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sashasz3 -- thanks, meanwhile we heard from the RO that she might approve a 3-week rads protocol for my wife, I believe 42.5 Gy over 16 sessions instead of 50 Gy over 25. We're seeing the RO later this week, let us know if anyone wants to know the details
Torigirl -- nice to "see" you here, thank you for being the Elastogels trailblazer and for sharing your tips and advice with us.
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Leann:
I go for #2 next Thursday and I too am hoping that this is the worst of the shedding. I do wish I had cut my hair before all of this as the weight, I think, might make it hard on the hair. Mine seems to be breaking off more than anything else (and I don't color mine) so I think I'll try the olive oil treatment and see if that helps.
ToriGirl: Thanks for your input about the liners. You've had great success so that is valuable input. How often did you use the caps in between treatments?
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Arlene,
During treatments I was doing about an hour a day, 3x a week...
After treatment, I did the same for about 4 weeks...
You are all doing so wonderfully....keep on keeping on!
xoxo
Tori
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Thanks ToriGirl!
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Thank you ArleneA this must be something else as I have washed my hair and they are still there....we'll see what happens as time goes on.
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We finished #5 with EG caps. Took more temp measurements- Caps do heat up irregularly, some spots of cap get warmer than others and each cap seems to be different. Due to amount of shedding from previous bad caps from Advance that warmed to +38, we moved closer to 15-20 min on each cap and will do 4 hours on second day. Material inside caps seems to "grab" hair, unlike slick inside of Penguins. But is is more hair than those who don't use any caps.
All in all, I would go for the cost and trouble of the Penguins if I had it to do over for my daughter.
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Motherofpatient,
I think that may be why EG recommends using the plastic shower caps, hair does not seem to stick to the inside of the caps when using them, i debated whether or not to use the shower cap today or not, but reading that your daughters hair seems to stick to the inside by not using them I think I will keep using them. Also it seems that a lot of people are going by time not by temps in taking off the caps, penguins and elasto. I to had to change caps every 15 minutes on my last session due to warmer temps, it was quite the pain, but what I felt was the warmest, sides and back, the coldest being the top, I lost the most on the top, including a bald spot, and lost the least in the back, the stress of trying to figure all this out is making my hair fall out
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ToriGirl,
Did you go by time or temperature when taking off the caps during treatment?
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Leeann: I am going strictly by time and change out my EGs every 20 minutes and plan to continue to use the liners too.Sure don't need any sticking to the hair - it is having a hard enough time holding on without it sticking to something.
Getting ready to do my in between caps in a bit. I'll do as ToriGirl did in between - she had great success. Hard to tell yet where my most hair loss is coming from but oddly enough don't see any loss in the back but time will tell since Chemo #2 isn't until next Thursday.
As we know, everyone responds differently.
Arlene
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Hi Ladies can anyone classify shedding? It seems like I am leaving hair wherever I go. And using a wide tooth comb this morning it was coming out in strands of 10-20+. I am 21 days Post TX # 1 and 2 days since TX # 2. I used caps for 2 hrs each day since TX on Monday. I feel like I am losing a ton of hair, getting discouraged but will keep going on. How are you freezing your caps in between? I am getting dry ice everyday but caps only hold temps for 15 -20 min. I have allot of hair but I am concerned because when I touch it it comes out.
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I failed!!! My hair started shedding big time 2 days before my second round of FEC - just as I had started to believe I'd keep my hair. The nurses said the cold cap MAY delay the total loss but wouldn't prevent it. So yesterday, at cycle 2, I ditched the cap : - (
I feel like I am raining hair. Haven't shaved it yet but am wearing a wig (see photo). Bugger!!!!!!!
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Hey NMoss: Just finished my between TX caps. After that, I had to run the comb through it and even more hair loss than before. I think shedding means no clumps. My hubby is still my cheerleader and trying to keep me positive but it is so hard when you see so much coming out. Guess I need to be prepared.
ADangel: Were you using the caps at your center? Assuming since you are from the UK, that is the case. Sorry they didn't work....no guarantees for any of us but worth the try!
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Hi NMoss, Arlene...
Stick with me on this one...ok? This helped me put it all in perspective. Though, I am kind of a math geek!
If you have 130,000 follicles on your head, what the experts say for blond hair. Let's just say that you have 6 treatments, 21 days apart, total of 126 days (that includes the last 21 days post chemo). Assume you will shed all those days. 130,000/126 days = 1,032 follicles you would need to shed each day to lose your entire head of hair. Now, let's assume you lose just 10% of your follicles, that is 103 follicles per day. A loss of 20% of your hair is 206 follicles per day. 30% is 309 follicles per day.
After I comb - still - I have handfuls of hair. If I counted, it would be about 10 hairs. Then the four or five on my shirt, plus a couple on the floor. I am making it though....you will too.
Hang in there!!! It is working...though it is stressful!
Annie
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Good Day All:
Shedding continues throughout the chemo period and beyond. Frank says we are saving the new, baby hair follicles with cold caps, the old ones will fall out. We normally shed hair everyday, but are not tuned into it. Everyone sheds differently, it depends on many things--how long or short hair is(shorter hair gets more coverage in caps), how thick it is, your normal shedding and growing cycles, how cold caps were, how well caps fit your head and hair, etc.
I asked Frank how long after chemo to take gentle care of hair and he says 6 months. He said to continue cool washes, gentle products and only vegetable dye after 2 months. til 6 months are past. Gentle cuts and trims too.
Well I can do it, if it means my hair will be strong and good after 6 months, I don't mind the gentle shampoo, but I need some kind of mousse or gel to give my hair body--I'll have to find some non-chemical or organic one. The gentle dye, I guess that will be okay. The hair cut and style will be essential, I cannot look like this mess for 6 more months!! Maybe a few more weeks or another month, maybe even 2, but that is the limit!!
I haven't had a haircut since Nov 5th. My chemo started in Jan, but Frank said not to cut it before you start chemo and I was due for a haircut in Dec. I think I should have gotten a haircut in early Dec. and it would have been okay, but "cest la vie"! My short haircut is now creeping down my neck and my bangs are down my face. Well at least it shows my hair is growing during chemo instead of becoming bald!! It really is amazing--my hair is shedding, but it is growing!!.
Keep Positive Ladies, this is really a milestone journey we are on!!
Hopefully we will get the word out to enough people and Dr.'s and Oncology people and they will be more open and receptive to this process. Maybe soon it will be FDA approved, and when that happens, everyone will be given this choice!!!
Nancy
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Annie and Keep: Thanks for the positive words and the 'math' (Annie)...I won't give up until I have to. I did my in-between caps today and will be more diligent about those.
You ladies sure are helpful and give me hope! It is just so much more hair than I've ever seen.
THANK YOU!!!! THANK YOU!!!!
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I have found Giovanni (available at Whole Foods...probably some other places too) has some organic hair straightening gel and the Organix line has some styling products too (available at Target, CVS, Walmart, etc...)
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Hi y'all--I am 3 1/2 mo post chemo and it pulls at my heart to hear so many of you going through that awful period around the 2nd treatment--the uncertainty, the itching. I shed a lot--I remember one combing in particular where it almost qualified as clumps--but I made it through w/ about 1/2 of my very thick hair. If I had any advice it would be to focus not just on the cap temps (clearly important) but also keep them as tight as you can. My hairdresser noticed that the areas where I lost the least hair--virtually none--was in a band around from back to front where the really tight velcro straps were holding my Penguin Cold Caps down, tight. They weren't as tight in other areas (around the perimeter and crown of head) and I lost more hair there. Think about it--if they're not tight, then you could be losing the cold to the air or the top of your hair strands, but not getting it to the roots where you really need it. Does that make sense? Annie is also right, you can lose a LOT of strands and still have plenty of hair left over. (I had 4x taxotere and cytoxin).
KeepPositive, I've been easing into the more normal hair care, sort of putting a toe in the water first. A little trimming, then a little temporary coloring, etc. Today I washed my hair with two shampooings in luke warm water (for the 1st time). And including the combing, lost only maybe 10 hairs in the whole process. So I think things are pretty much back to normal but I'll continue to be careful til the 6 month mark, better safe then sorry.
Hang in there ladies! Lucky.
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Lucky: You sure make me feel better. It is just so frightening to see so much coming out and haven't even made it to TX#2 which should have been Monday but the doctor had a conflict and rescheduled to next Thursday.
Need to make sure my caps are as tight as possible in the future.
Thanks for the encouragement.
Arlene
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leeann56-
I went by time, not temperature...I never used a thermometer, because I was originally told that I didn't need too....I had no problems with changing out every 20-25 minutes. I just "knew" it was time to change and welcomed the "brain freeze"..to me, it meant that they were cold enough!
Most of my shedding were days 17-24 after the first treatment (and 3 days into the 2nd)...I knew from reading the thread that during that time there would be more shedding...then, after each of the 4 treatments after there would be a "bit" more shedding around day 14 in the 21 day cycle.
Remember, NORMAL shedding is 100 hairs a day....you are not washing your hair as much as you were before chemo, so when you do, it will appear that you are losing a "grip" of hair, but a lot has to do with the fact that you are not messing with it like you were normally, so it appears to be coming out in droves....As stated above, we are all just more in "tuned" to it during treatment....more aware of the hairs that fall out when before we just didn't notice....at least, that is the way I thought of it....
It's hard not to stress during this, but stress is never a good thing either...
You are all doing wonderful! You can do this and WILL TRIUMPH!
xoxo
Tori
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Time vs temp - both are important. It doesn't matter if you change every 10 min if you have Advance lousy caps because they are too warm whenever. The problem to over come is keeping the scalp from warming then cooling - rapid vasoconstriction - what Frank tries to avoid with his caps. If a cap gets to +38 like the Advance did, then it doesn't matter if you change every 10 min. It cost my daughter a lot of hair. Her actual harir loss doesn't show in the cell phone photos, but it is significant. When her hair is wet or needs washed, you can really see how much she lost and I blame it directly on the Advance caps used during the 3rd chemo. Yes, they did not charge me for them wanting good publicity in exchange, but I would rather have paid the PCC $500 a month and not had a totally wasted chemo session with warm caps.
As for the shower cap liners, maybe good to keep hair from being pulled but Frank said use nothing between caps and hair. Maybe this is a design problem with EG since they were originally for migraines.
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Whew! Shedding has slowed way down but I learned a lot from the shedding, like where the caps need to be tighter. Oddly, I haven't lost any in my bang area or the base of my head (yet). It seems to be pretty much evenly distributed but more on the left side of my head than the right so I know where to tighten.
I'm doing time too and can actually tell when they are warming and if it is earlier than 20 minutes, I change them out. When I do the home caps, I time them for 15 minutes and I haven't been wetting at home.
My caps were brand new and I keep the cardboard inside of them and keep them in the plastic bags too.
I'm feeling more positive today! Thanks to everyone for their helpful comments.
Arlene
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you've posted some great info! i'll be starting with my cold caps in about a week. AC/Taxol. Anyone with more advice/tips/comments?? Can't have too much info!!!
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Hello and welcome LivCar. There are a lot of very knowledgeable people on this blog who can guide you along the way. Which caps are you using? Probably more here are using PCC but the Elastos are gaining ground too...many of us purchased our caps outright.
I'm too new yet to help much but I think they are working. Had a few frightening days that is for sure but things have settled down now.
Good luck!
Arlene
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LivCar: good luck! I am done with 3 of 4 TC treatments and still have hair. Was at the doc's office today getting a neulasta shot and the nurse was stunned - could not believe it was my hair. My doctor even asked me the other day "have you even lost any hair?". Between you and me...yes, I have lost hair. I have lost a little evenly spread I guess....no bald spots or clumps came out. Shedding is scary but to everyone else I look just like me (with a little different hair styles since I can't wash and blow dry hair straight as I usually do). If you have questions, feel free to PM me. I have my last chemo in 20 days! I am going to try an post a photo of my hair when I wash it again...right now it is on day 6 after washing...not too pretty but it's amazing what a cute headband and hair clip can do!
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