Cold Caps Users Past and Present, to Save Hair
Comments
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Willa - during chemo fusions I did include Perjeta as part of the chemo time, I figured What do I have to lose. Now that chemo's done, I'm on Herceptin/Perjeta fusions alone for a year and not weating caps.
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Kechla, hang in there!! You'll be in my thoughts! Remember to drink a ton of water before, during, and for 3 days after! Get that junk out the faster the better!
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Willa, nice to hear from you today! You've been on my mind too:)
Dancetracer,Zinny, Aussie Thankyou for posting such encouragement !! It really does help!
KD I'm wondering about the cap reps too. I have emailed mine 3 times for questions and nothing. Very disappointed how do they expect recommendations? Do you hve Arctic or PCC? Next week is my 3rd infusion and wanted to knw what can I do since I lost almost all hair on top and very sensitive now. Still on the fence about switching cap company but don't knw if it'll do any good bc I've list so much or try to hold on to what's left.
Jiffrig, no hair lost! Good job who was your cap company's?
Aimless,I did t use pillow cover bc I have high thread count thats very soft. But hear the rich use them to ward off wrinkles too. I'm not sure when to get a wig bc I have little left on top , get a topper or wait til the end maybe I'll need a full wig. Any suggestions ?? I have 2 more apts to go. At least shedding has slowed but will it start up again? I'm wearing hats tight now. We have big 50 th anniversary party to go to next month and want to go but my hair is a serious mess.
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ladies it gets better. I'm 3 months out from chemo and 2 weeks out from radiation and I'm starting to feel like the old me (but without any estrogen). I really do feel good. I went kayaking this weekend and went 5.5 miles. I wasn't even sore the next day. My brain still has a long way to go in the healing process and I feel raw like you guys do. It's hard for me to talk about cancer stuff to my non cancer friends because I feel like I have to "dumb down" what I'm saying and they still don't understand. You guys are being really hard on yourselves. I 2nd guessed some of the decisions I made regarding surgery and I finally had to let it go because it wasn't serving me well. What's done is done.
Phaila and victory- I finished chemo around the same time you guys did. How come I got so far ahead on radiation? I did 34 treatments and finished 2 weeks ago. Weird.
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Meow, I am using penguin cold caps with the additional cold band that goes around the back and up around ears and top of head. I think that is the key to my success so far. It keeps the perimeter of my head cold. I have a big head and lots of hair to begin with. I always thought I was lucky to have such good hair at 67 when my friends are losing hair but then someone told me it's because of all of the estrogen in my body...oops
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Meow - I used Peguin cold caps. 80% of my shedding happened post chemo. I called 3 of their reps, and when I asked why this is happening to me when I was doingso well during chemo? They said:
1) it's unusual but everybody is different 2) Shedding should stop soon 3) Just wait and see what happens
When I asked one of them if it's possible I'll lose all of my hair? He said: at this point anything is possible.
Anyhow, you should keep your scalp cool, not sure wearing a hat is wise right now, of course other ladies who have been successful with capping can chime in.
Think positive (I keep telling myself that).
Hugs.
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Ok thanks, your right about the hat and keeping my head cool. I just don't knw whst else to do since I lost most of my hair on top already. What did you ladies wear? I can only do so much w Toppik. I have 2 more infusions to go. If I wear a wig it could make my head hot too?
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Meow - A whole wig is heavy too and I don't think is a good idea. I have a beautiful wig, paid $1,600 for it,but I haven't worn it since I'm still shedding. Although it is very natural I feel fake with it, so hopefully if/when the shedding stops, I'll have enough hair left to get away with a woman's boy or a pixie haircut. God willing. I pray every night I go to sleep.
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Cody I lost a lot of hair post chemo from the nape of my neck so I cut it shorter so the new hair would catch up quicker to the old hair and look thicker.
Aimless I did stop sleeping on the satin pillowcase this past summer and was fine but when winter came and I put flanette sheets on the bed I noticed hair on my pillowcase so I switched back to the satin ones also cooler for me when I get my hot flushes at night
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Runner, I started chemo a month after you, that's why I am behind on radiation. My final chemo was 5 weeks ago. Today I am doing radiation #3. Total 20 times. I asked yesterday why it is only 20 when most have more. According to MSKC protocol they do less treatments for years now -16 + 4 boosts. Based on UK and Canada trials some years ago. Based on studies there even a bit higher 12 yr survival rate with that. Well...12 yr...what happens after?;)
Anyway, I am glad I have less visits for radiation
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Thanks for the pillowcase input..I gave it the heave-ho last night - and actually, my hair looked a little less crazy this morning.
Meow: My solution for covering is a VERY wide plastic/cloth hairband (Amazon - took weeks to arrive - came from China). I cover the plastic (with grippers) with ribbon so there's no friction on my head. That and Toppix does the trick. I also clip my (VERY THIN) hair gently back and pin a "bun" in. It may not follow the rules, but a girl has to face the world! (I also wear mesh backed hats,and the topper for dress up.)
Runner, I agree with your outlook - as the treatment is almost behind me (4 more radiation tx) - I am feeling more and more like me. I'm running up stairs - my body is craving exercise (I could NOT move off the couch during chemo), I had dinner out with my family last night - and strolling down the street in center city (Philly), with the breeze in my (TOPPER) hair - I felt as good as I have in MONTHS. I have down days and up days. Grateful for the up days to sustain me!!
I'm moving my youngest to college this weekend - can't decide how to do the hair thing...hat? Topper? N natural (well, with Toppix and bun pinned in?). My daughter said she is proud of me no matter how I look, and assured me it's how I feel comfortable. Empty nest and a new chapter await.
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No chemo today. Could not get an IV started after digging in 4 different places. Got a picc line instead. On my way to get more dry ice for tomorrow. Frustrated!
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Thought I'd share that my RO suggests 50mg of B6 per day to prevent neuropathy. (Not to exceed 100mg/day.)
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vicktory- you'll be finished before you know it! I suspect my protocol was a little different since I had lymph node metastasis. I did some kind of newer radiation called IMRT to limit how much of my lungs it hits. I didn't burn at all which surprised everyone since I'm so fair. I did burn during the boost. I did 7 or 8 of those. I don't care that I did a lot of radiation. Whatever it takes to fry those little SOB cancer cells.
I met someone today who finished TC chemo in March. I told her I finished in May and I got the weirdest look from her. I finally figured out it was because I have hair so I told her what I did. She had heard of it but not known of anyone who tried it. I'm a believer.
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Kechla: Wow, sorry about your chemo delay. That's frustrating. I can relate a bit as I don't have a port and am nervous each time that I'll have that prob with getting a vein. Best of luck tomorrow. I'll be thinking of you and the lovely caps as I'm doing round #3 tomorrow also.
Runner and Aimless: You guys give me hope that one day in the not too distant future we can feel good, like ourselves again!!
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Hi all, I am considering using PCC's and my chemo regimen is TC x 4 but I will be going on Tamoxifen after and I see that hair thinning is listed as a SE. Is there anyone who has done the PCC's that took Tamoxifen and their hair was okay. I guess what I am trying to say is, is it worth to do PCC's to save your hair if you end up taking tamoxifen after and losing it with that?
Sorry I am very new to all of this and this cancer journey has been an overwhelming one with all the information you get and the info your not getting but need to know.
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I had my first infusion this morning. Unfortunately about 7 minutes into taxotere I had an allergic reaction (flushing, trouble breathing and hip/back pain.) The team was all over it and was resolved in about 5 minutes with Benadryl. After about 30 minutes they started up the taxotere again with no issues. The allergic reaction came right at cap change time so one of my caps was about 10 minutes late. Hopefully no harm done. Anyone else have a delay? I think icing my hands and feet was even more difficult than the caps. 1 down. 3 to go
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Kechla, you look great! Maybe sounds crazy but that's pretty much how I look! I hate that you had a reaction. I got Benadryl and steroid, nausea bf my infusion started. I'm glad your ok now and as far as the capping it's kinda hard to say Drink a ton of water for 3 days after as back up. Hang in there!
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Go girl, hope you are as lucky as I have been with cc! Looks like you are snug in the cap. Looks good. How are you icing your hands and feet. That's my worry. Doing taxol after 2 more a/
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tanyam, I took Tamoxifen for about 7 months. (Stopped for various reasons, mainly because my ER+ was only 26% and I was PR- and my oncologist thinks the Herceptin took care of everything.) Anyway, I did not notice any hair loss while taking Tamoxifen. I am sure it causes thinning for some - no way to know until/unless you try it. I empathize with all you're going through right now, trying to make the right decisions. It IS very overwhelming!
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I put bags of frozen peas in a pair of socks and laid my hands and feet on them while curling my fingertips and toes into them. I took some breaks when it got to be too much. I tried wrapping the peas on with an ace wrap or another pair of stretchy socks but it was easier this way. I needed to take breaks from it, especially on the feet
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the top of my head is really sore after cold capping. Anyone else have this issue
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Kechla, good job! You look so cute. I had benadryl and steroids all the way as premed trough chemo. Even when I started getting a lot of leg swelling my MO would not reduce a steroid dose. He thinks it is a must.
Yes I agree icing is difficult but I did it all 12 times through My Taxol. Had no neuropathy.
Good luck! I am 4 radiation down 16 more to go.
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kechla - yes, sore top of the head is normal! Nothing to worry about. Glad you made it through #1.
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Thanks Vik. Are you done after radiation? It will go very fast. Good luck!
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Kechla, I did not get sore but a burning sensation as I thawed! 😳 How long did you keep on after? I am only doing 3 hours. I come home with it on, immediately fall asleepand my poor husband has to wake me every 1/2 hour to change it.
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I did 4 hours after. Head is feeling less tender now. Hopefully nothing to worry about
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Kechla, I will still have Herceptin every 3 weeks and will have to start Tamoxifen.....😢As long as it keeps it under control......I feel kind of scared to be over with weekly or daily treatments...
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kechla - I took B6 throughout and also glutamine for 7 days after chemo - 15 grams twice a day, I think? I didn't ice fingers and toes. I had 4 doses of DD taxol and I had a little neuropathy, feet more than hands, just tips, but it is gone now (4 months PFC)
also got sore scalp, made me super worried at times, thought all my hair was going to fall out…didn't happen, settled on its own.
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Viktoryak you said something about your legs swelling? My legs have been achy and now they're rubbing together like I've gained weight and I'm like WTH ? So most likely from the steroids tooI'm thinking.
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