Cold Caps Users Past and Present, to Save Hair
Comments
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elastogelgirl, your hair looks great. I too cut mine before starting chemo to the same length you have. Except mine is curly so it looks awful. I used to straighten it so I hate my hair curly. Looks dry with no products.
Latchol, your supposed to leave the caps on for 4hrs after chemo. I too live about 45 min away from my infusion center. We have to stop 2times and park somewhere to change the caps out on our way home. Better than waiting at the infusion center for 4hours. Good luck.
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Hi Everyone!
I've only posted once before - asking if PCCs
would work for 12 weekly rounds of Taxol followed by 4 rounds of AC @ once
every 3 weeks. Thanks to all for replies. I've had 3 Taxol infusions so far
and my hair loss seems minimal - I'm seeing some but nothing that makes me
gasp. I've been good following the protocol - capping up an hour before and
about 4 hours after and washing just once a week. My hair is so dirty/stringy
in between that it is laughable. I’m practically knocked out during the
taxol infusion bcs of the initial 45 min of Benadryl and anti-nausea drugs (and
whatever else is in there), so for the caps, my DH just pulls me up, makes a
cap change, and I just roll back down for another 25 minute snooze. We are
lucky enough to get a room to ourselves– I think more for the other families’
comfort than ours – DH is banging the ice around in the cooler, always jumping
up to rearrange the caps, and all that screeching velcro! Infusion day would almost be pleasant if it
wasn’t for those dang caps.So here are some Qs for you cold cap veterans:
1. Should I expect a big shed soon? My 4th
infusion was cancelled bcs my white cell count was down. Altho I’m frustrated
to be adding even one more week to this whole ordeal, I’m assuming that can
only be a good thing for my hair. Has
anyone been given filgrastim-sndz to increase white cell production? What’s that like?2. For those experiencing tingly fingers and
feet - is it constant or does it come and go? Is it just a weird jiggly
sensation or do your fingers or toes actually feel numb?3. Anyone using dry shampoo? (I put it back
on the shelf tonight bcs isobutene for the spray was the first ingredient) – am
wondering if it works or is worth it?4. Do your heads itch a lot??
Thanks!
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Hi Cold Cappers!
Has anyone used the Arctic Cold Caps? I am evaluating the different systems out there and would love some feedback on this system. Thanks in advance!
Anne
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lovesgreenthings. I use the ACC. I just finished with my infusions yesterday. 4 of AC and 4 of Tacol. I have about 60% of my hair left. What are some of your questions?
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Lanne2388, just dropping in to say Yes to the dry shampoo. I used it successfully all through chemo and still do now. Not every day, but it does help give my hair the good-girl/bad-girl volume i like. I stockpile the Dove brand stuff when it is on sale. Been using it for a few years.
If dry shampoo is wrong, i don't want to be right.
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Lanne, I never had a "big shed" on weekly taxol. I finished my 12 weeks with probably 95% of my hair, at least. I started getting tingly hands and feet after abut three infusions, if I'm remembering right. Those are the first signs of neuropathy. That's when I started taking l-glutamine (30 grams per day), and vitamin B6, 100 mg per day. I took the B6 every day, and the l-glutamine 4 days a week - the day of infusion and subsequent three days. It seemed to work for me - the tingling never developed into anything worse. At least until about three weeks after I finished taxol, when one of my big toes became completely numb. My infusion nurse had told me to keep taking the l-glutamine for a few weeks, but I didn't and the numbness was the result. It took many months to go away
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Lanne, I use Acure Dry Shampoo that I get on Amazon. It's like a miniature baby powder bottle and it just shakes out into your hand. I just rub it through my hair before bed and by morning the grease is gone! There are not nasty chemicals in this product, so it should be safe for us to use. I also use Acure Shampoo and Conditioner. The Dry Shampoo is in a tiny bottle for $8.49, but it doesn't take much to do the trick.
https://www.amazon.com/gp/product/B0071HIE94/ref=oh_aui_detailpage_o02_s01?ie=UTF8&psc=1,
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hi lanne, I do the neupogen injection which is the same one your asking about. Just take Claritin about 30 min before because it does cause bone pain. I also noticed it causes flu like symptoms like body ache, head fog. Or maybe that's the chemo who knows but that's how I feel. I inject myself starting the day after chemo for 7days. Good luck
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I did not use dry shampoo, but I did make my own out of corn starch and a few drops of your favorite essential oil. I used a (clean) blush brush to apply it to my hair. Worked great.
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For those PFC...how long after your last infusion did you notice the shedding slowed down?
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Dee - how long did you keep your cap on after Taxol infusion? You did Artic Caps right? Did they advise you how long to keep the cap on?
I have the same question about shedding PFC. I have my last dose dense Taxol next week. I did AC first then Taxol, I hardly lost any on AC and have lost tons on Taxol.0 -
Luvmyys
Yes I did the Acc. Same here I feel like taxol has been worst with the shedding. I changed caps every 15/20 min. 30/45 b4 infusion, during and up to 3/5 hours afterwards depending on how much pain I was in... I'm now starting to regreat not doing it longer. I didn't comb my hair yesterday before my infusion and this morning it was coming out by the hand fulls. So worried I made it this far to let it go now. I've lost 90% of my eyebrows, my nails are black and now I'm faced with the ginormous shedding.
Hoping some past cappers can shed some light.
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IL311--I've been thinking about you! Hope the shedding is quick and done before you know it. Is to like the big shed after #1? I'm a week and a half behind you. I'll let you know how my shedding is without doing anything to it.
Elastogelgirl--you are AMAZING still skiing. I'm dying just walking on the treadmill some days! I'm keeping my hair in a bag too. Just to get an idea of how much I've lost. I think I'll know in another 2 weeks how much I really lost. Hoping it's just the constant small shedding and no more big sheds! After reading IL311, I'm nervous!
Hanginginthere-- I'm sad about the BBQ article but not surprised. My husband has a big green egg and I haven't eaten anything he's smoked only because I lost my taste in Nov and when I've tried his meat, it tastes only like I'm eating smoke, no other flavor.
A happy day for me, I sent back my cold caps today!!! It took me 10 days to be able to even be around them without feeling like I was going to gag. I didn't want to smell them although the really didn't smell like I thought they would. The SE of this last round really did a number on my GI system. Now I'm in the fatigue stage. I'm SO thankful I'm done!The SEs have been worse and lasted longer with the past 2 rounds. It's mentally challenging too. Gray winter skies in IL don't help when you are so tired all the time.
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pamela23-thanks for the ski compliment..I had my last of 4Ac treatments on Friday. I did make out on the skinny cross country skis for about 30 mins yesterday...now I'm starting to feel the SEs pretty bad this am. My face looks like a frog..never had this before..
I might have gotten a little sunburn. Maybe why I get so puffy. I used sunscreen but apparently not enough...my head hair started to heat up so I put snow under my hat! Warning there! if any of you are playing in snow you can do this it will chill your head but it's a one snow handfu!l if you try move the snow on head it might pull your hair!
My fourth AC was my most emotional so far I cried on the way and at the dry ice store. I could not wear the cold mitts on hands and feet. I will need to be stronger with those on the taxol! I hope I can.
My hair is great I think for this many AC treatments but the Taxol has me really scared!
Now my current battle will be with my bowel! I'm going to try to get ahead of this now!
So here's another photo from my backyard skiing a few days ago.keep in mind this skiing I do is in very short spurts..these areas I ski are mostly all in my back yard! And Heavenly ski resort is 15 mins away. I'm so lucky to be able to do my sport even for a short run...to lift my spirits!
Lower photo is from yesterday 1 day post Ac right before my neulasta shot. I can do those locally thankfully. I only lasted 30 mins so dang tired. Today I'm trashed won't get out on skis for a few.
Hugs all0 -
elastogelgirl, what a beautiful back yard!
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Elastogelgirl - I've been thinkinig about you since Friday. I'm glad you made it through the treatment. Now to get through the SE. I'm so glad that you live in such a beautiful place!
Pamela23 - Congratulations on finishing up with those cold caps! I can't wait until I do the same thing! Keep us posted on the hair! I haven't had my big shed yet and I'm not looking forward to it! I shed a lot on a regular basis and have thick hair anyway, so I'm dreading it! I still have 3 treatments to go!
I hope everyone is enjoying their weekend!
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Thanks to the determination and dedication of my husband, gel cap therapy was successful. Private message me if I can be of service in how he did this.
Coach Vicky
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For those asking, I had a noticeable decrease in shedding at about 7 weeks. I did TC
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Elastogelgirl, don't worry about the hand mitts. I got the information from this board, but just could not do it. My friend said she would paint my nails if they get dark. It is all I can do to survive the cold capping.
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Willa216, sorry it took so long to reply:
your quote...
My stylist just wants to use my regular color but I've read (not here) that dark hair can turn orange if colored incorrectly or too soon.
Jstan: I remember now you got Daniel Field - I looked into that and it does seem wonderful. My stylist doesn't know it so she seems uninterested. I may delay my Saturday appt and order that. I also spoke to some other hair stylists who seem like they're more willing to think outside the box and help me. Kind of annoyed at my stylist (whom I love and have had for years and years) because she doesn't want to think at all. But maybe that's unfair . Is your hair dark? Do you think the shade of the color came out the way you expected?
My hair is dark and it took perfectly,my hairdresser was happy to use it it was a little weird for her to use because it was not what she was used to.its a powder and you add water and it turns like a loose pudding.i have actually bought more to use again i like it better than the kind my hair dresser uses it doesnt sting or smell or wash out in the shower the next day, really there is no color coming out in the shower water is clear. i hope its not too late, it does take a while to get it from the UK but its worth the wait.
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Elastogelgirl, I'm impressed with anyone who can ski, especially during chemo. I went skiing for the first time in Vail last week and here's what I looked like most of the tim:
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ok so I'm going to write another post. I finished chemo at the end of May and anyone who was around then may remember I lost a lot of hair on top, about the size of my palm was bald. I could hide it pretty well by parting it on the other side and combing it over. It's about 5 inches long now. I've always had highlights in my hair but I noticed all my new hair is coming back a really pretty copper color, like it was when I was 12.
So I got my haircut yesterday and decided to skip the highlights and go with the color that's coming in. To hide the old highlights, I started parting my hair on the side that really exposes the area that made me lose a lot of hair but my hairdresser somehow managed to flatten and smooth the coarse chemo hair and it blends in with the other hair so well you can barely tell it's shorter. Hopefully I can emulate what she did. For the first time since March, I like my hair again. It has a long way to grow out before it catches up with the other hair but at least I have the appearance of a lot more volume. And I love the color!
What do you guys do to tame the crazy chemo hair that's growing in? Mine took lots of hair product and a straightening iron. Otherwise, the top of my head looks like pubic hair.
Has anyone else noticed their hair has reverted back to its original color? Maybe it's the tamoxifen. It seems like even old hair that didn't fall out is now turning copper at the roots. It's so weird but what a pleasant surprise!
Cap on, ladies!
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My hair is coming in very dark with little gray. Before chemo I thought I was 100% gray!
I keep a short buzz cut to tame the new hair.
Coach Vick
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My hair is coming in very dark with little gray. Before chemo I thought I was 100% gray!
I keep a short buzz cut to tame the new hair.
Coach Vicky
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runner70
lol thanks for the cute pic! And you made me laugh!
Hugs e😎
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Kechla- I noticed your dx is very similar to mine. They found residual breast tissue not cleared at the sternum area is where the new cancer grew on me. What happened with yours ? Since you had mx too I am interested if you don't mind.
Thank you
Daniell
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Question for you all: on your once-weekly shampooing, is it better to do it right before treatment, so your scalp is clean, or is it better to have a little buildup? I'm going back in for Taxol session #4 at the end of this week after an off week, so my wash day is flexible. I just want to make sure I pick the optimal day.
@elastogelgirl, you inspired me. We took the twins up for their very first snow experience this weekend. We stayed clear of highway 50/80 ski traffic and took them up to Arnold, near Bear Valley. No skiing or sledding yet, but it was so fun to watch them learn their way in the snow. My daughter especially seems like a natural in it. Though it was only a 2-hour drive from home, it made for a LONG day. You are so lucky to have it in your own backyard.
Here's us. I'm 3 weeks in, after 2 Taxol and 1 cisplatin. No big shed yet, so am enjoying it while we can!
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lizjo- thanks for adorable photo!...I love all these photos! Great t see lighter sides of living and enjoying moments during this treatment.
I'm having a problem with flashbacks to my capping. I think of it then I feel nausea. My brain won't let go. I have 4 DD taxol to go. Halfway there. I just hope I have the stomach for it! I need some biofeedback or something to get my brain rewired. The weird thing is the caps don't hurt me that bad but it is the relationship to the chemo I think that has got my head al messed up. I also fear it's not going to work...though I talk a lot about just having any hair being okay....I think it's just getting harder on me all the way round!
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My Penguin directions say do NOT wash two days prior to treatment to limit residue. It also says to make sure to wash on day 3 after treatment to remove any chemical gunk that can mildly burn the scalp. It seems the directions change periodically, but this was what they sent me with my caps. I'm not good at only washing weekly. I wash about every 3 days on non-treatment weeks. I just hope I don't regret it! I've only had one treatment and I'm not to the shed stage yet, so we will see.
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Hi everyone I wanted to do a check in. I am 12 1/2 weeks PFC. I wanted to shared a little about my journey with the cold caps to hopefully help someone. Still in radiation with 12 more treatments to go. Have had a difficult time in radiation due to problems with my expander so I have had to stop and start a few times. I know what a difficult process it is. There were times during the process I thought about stopping the cold capping but I am so glad that I stuck with it. I did have some steady shedding post chemo till about 6-7 weeks and now I may get a strain here and there. I mostly had success my hair thinned all over and I had bald spots around the ears (from the first treatment we didn't used the headbands right). I used Penguin Cold Caps and followed the instructions as best I could. I did straight iron my hair and washed it more often than suggested. I would estimate I lost 40% of my hair maybe less. Sending hugs to everyone.
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