Cold Caps Users Past and Present, to Save Hair
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elastigel girl, i bought fine hair nets (ie cafeteria lady) in case i had a problem with it getting caught in velcro. Didn't need it since my hair is fine/limp, but i think it would do a good job without adding bulk or insulation.
I think people have mentioned padding chin straps with folded washcloths or soft fabric, but dont remember which type of cap they were using.
Just spitballing since I didnt have her regimen, but can the chemo meds be given in any order? Ie, if she can pre-cool her scalp for however long polar recommends, and then have the carboplatin and taxotere, she could count the herceptin and perjeta infusion time as part of her required post chemo capping hours. Or do those cause hair loss too?
Willow
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Happy early morning ya'll! TC #4 was Tuesday-- YAY! 4 down, 2 to go!-- so I've been chillaxin, but dealing with the usual messed up steroid sleep now, so wanted to check in on everyone!
To begin, I did have what seemed like some "extra shedding" the day or two before #4.... similar to right before #2 around day 21. Not sure if others experienced the same or not. Boy, if I only had to have 4 TC infusions, I would be ecstatic with the hair I have left, even knowing PFC would take some too. Pretty incredible, and my friends are dumbfounded by this process! I keep praying it holds on for another 2 infusions. I would say I've lost 25% of my hair if not a bit more. To a stranger it looks normal, even my teen children think it looks totally the same-- which thrills me since they are 1/2 the reason I did this process anyway. Fingers crossed as we keep on truckin! 🤞🏼
Alletan-- You are lovely no matter what you decide to do with your hair! It is only one time, so I think it would be okay to be gentle and have fun styling your ends....but I would be sure to stay away from sticky products like hairspray and such. And don't forget how lovely updos are for weddings-- especially when loose knots and braids are so popular-- all which would work safely for your hair. Just remember that a beautiful smile is your best accessory! Have a wonderful time & Enjoy all the love at the wedding!
Elastogirl-- Def suggest your friend purchase some hairnets! I bought some heavy duty ones from Amazon that have been working great! They have gotten stuck in the Velcro several times, and so happy it was the net and not my hair-- which is thick and wavy/curly/frizzy. Let me know if you want me to send you link to nets I chose. I sleep in them too....and wear them if cooking a big meal.... or if hot and simply want hair up especially a day or 2 after wash day when I don't want to put it in a braid yet. As for the chin strap, I pull it down hard with my hands while my "capping crew" get the cap all on and strapped down, and then I simply let it go. I have found that the cap is very secure in place and goin nowhere-- so I give myself a break on the chin strap.... but again, my hubby has got those 3 stretchy bands working hard to keep it down to my head! And love the pic of your dog by the way-- hilarious!! Thank you for sharing and good luck to your friend!
Magari-- proud of you for being so positive through your 1st shed! Sounds like you did great! On to #2! I love how you are having fun practicing your caps with friends-- You are going to have great results with your great attitude!
You all have had some chat about eyelashes/ eyebrows. Like Magari, I started using castor oil on mine, and attempting to go without mascara as much as possible. Such is usually my norm all summer, but in winter when I am more fair and tend to wear more makeup, I certainly miss my mascara. I did steal my daughter's faux glasses the other day and wore them walking around the store and I felt less self-conscious. I will probably use them when eyebrows fall out because the rims fall right at eyebrow height too. This all may sounds silly, but they were fun, and can easily be used if in a situation they would be helpful.
Off to try and catch a little more shut eye before the house awakes! Merry, merry to all!
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Good morning, all -
Elastogelgirl - I think I mentioned above that I have my infusion ordered TCPH. I cap for 55 minutes during premeds, during the Carboplatin and Taxotere, and start counting my 4 hours of post chemo time with the start of the Perjeta. I found that using a sleeve from an old polar fleece sweatshirt to pad the chin strap this last round made a big difference in comfort. I'm using light hairnets during the capping process and they tend to get caught in the velcro, but better them than my hair.
Day 25 from first infusion, 5 days out from #2. Still shedding far more than I would like. But at this point I haven't needed to shave my legs in a week and there's not a hint of stubble so I imagine I'd be pretty near bald by now if I weren't capping.
I did a very careful wash today and of course my scalp doesn't feel even remotely clean but at least my hair is a bit "fluffier" and less greasy looking/smelling. I think the Nizoral needs to be massaged into the scalp, which I cannot do right now, to do much good re the dandruff. So the flakes remain. I've got some definite scalp showing along my part line on the crown, but will sprinkle a little Toppik on that area and live with it.
My eyelashes and brows are holding on fairly well. Don't know if the castor oil is making a difference, but it can't hurt. I wear reading glasses anyway so I can always use them if I need to disguise thinning brows.
I'm tidying up the house and off to do a couple of errands while I still have the energy. Merry merry!
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Good afternoon Ladies,
Just checking in! I will have my third TC next Wednesday and the hair is hanging in there! I had a big shed just prior to chemo #2 and that went on a week. I thinned on top-a problem for the Dignicap! And, like many of you, I thought, "whelp, this is it." But, then it stopped and here I am. I am just doing four rounds of TC so I will complete this journey with chemotherapy on January 17th. I will be so happy to ring that bell! It has been interesting to be in treatment over the Christmas and holidays. It gives me even more perspective on what it means to be grateful and thankful. I hate chemo, but if it adds years to my life, I am blessed!
Magari~hopefully that shedding comes to a halt! It did with me, hang in there!
MamaFelice~congrats on #4 under your belt! I have a 14 1/2 year old son and an 11 year old daughter. Even though they are old enough to understand why I'm going through treatment, they are one of the many reasons I decided to cold cap. I think because they are old enough to understand, it helps for me to look and feel more like myself. Thanks for sharing your experiences with all of us!
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Elastogelgirl - For relieving the strap irritation, I used a fuzzy fleece sock to put under my chin for shielding the strap. Just one sock of this super soft texture, folded in half, and tucked under the chin. It worked like a charm!
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I also use a fuzzy sock under my chin strap! The receptionist at the check out desk at my MO office calls me “sock chin!” He’s of course being funny and not being rude. The chin strap is the worst part for me! I feel like I have TMJ by the end of the day! But I won’t complain
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Hello everyone,
I am at the start of my cold cap journey....any Taxol success stories here? I am doing weekly and have 2 of 12 done. I haven't had anything go on with my hair, but it's early given it's a low-dose Taxol. I have a question about working out...I've really gotten away from it with sugery and such, but wanted to try to get something in once per week. From what I've read in caring for your hair, you can't pull it back and it seems there's concern if your scalp gets too warm during a workout you should put a cold towel on your head afterwards? How did other cold cappers handle workouts? It may seem like a silly question, but I'm concerned about it falling out from working out??! I also have fine, wispy hair, so I need to keep it out of my face somehow or it gets in the way.
Tonir24- Totally agree about the chin strap thing being the worst- I use a fuzzy sock as well!!
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Hi Shay! I am getting weekly taxol + herceptin as well (12 weeks). my infusion center has seen great results with this chemo regimen and my oncologist actually encouraged me to cap. i just had #8 yesterday. 2/3 finished! from what i understand, most women on weekly taxol who aren't capping lose their hair around or after the fourth treatment. i have had no discernable hair loss at all. i also haven't lost much body hair but the chemo nurse i talked to said that they don't always go hand in hand. i know from the experience of some of the other ladies here that there could still be significant hair loss post-chemo so i am not counting my chickens, but so far so good.
What type of caps are you using?
I have been working out a bit but don't get too sweaty. the dignitana people say it's fine to get your head hot but i know others advise not to. i don't pull my hair back but i would use a a loose scrunchy low down near the nape of the neck if i needed to.
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Hi red, I'm using artic cold caps. They are the ones that mentioned the cold towel Thanks for the advice. Are you using the digni caps? I wish we had those systems here. I've been treating my hair like glass and doing everything I can to preserve it! Today i got fitted for a wig "just in case". Well the hairdresser who styles them raked a brush through my real hair several times to put it under the wig and I almost had a panic attack- considering a gentle comb is all I've been doing. I don't think a bunch came out but I was not ready for that! Glad to hear there are taxol success stories though.
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Hey Cold Cappers,
I just had my third infusion of Taxote/Cytoxan (every three weeks) and my hair is hanging in there. I started chemo six weeks ago today and had a BIG shed around days 18-24. I thinned on top but I still have hair and I have only normal shedding since that time.
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Yay Lizabeth!! 3 down! You look fantastic! You must be so pleased with how the Dignicap is working! I finished TC infusion #4 a week ago today. Handled treatment 4 better than 3.... probably all the holiday joy pushing me through! Still have 2 more TC to go!
Washed my hair today, so thought a good day to take a pic update too while out shopping for craft supplies with my family. Note the "fakie" glasses I'm wearing to camouflage me not wearing eye make up on my thinning lashes. With everyone's heat running on super high, my eyes have been so dry and manage better without makeup....so again, thispic is taken 1 week post TC infusion #4. ☺️
I am finding that the hair along the bottom of my neckline is thinning most, and with long layers, I feel like that long bottom layer needs a trim.... so I was thinking about trimming that layer myself a 1/2" every other week or so until it catches up with other layers to get rid of the stringy layer and join the thicker layers. Has anyone done such....or any thoughts or suggestions?
And it is my understanding that the Taxol only regimen has the greatest success with capping...so Shay should have great luck capping! Yay!
Counting down to 2018! Looking forward to the blessings the New Year will bring!
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You both look amazing!! Fingers crossed for me!!
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Something funny to share from the holiday..... after dinner each night we would answer a question from a question book. One evening, the question was: "Share two adjectives to describe yourself."
My husband's two adjectives were kind and "cold-capper extraordinaire" !!!
Cracked me up in laughter! Laughed so much this past week-- it felt sooo great! Cheers to all the cold-capper extraordinaires in our lives! 😍
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Thought I would take one of back of hair to show update as well.... and for reference, there is an earlier pic of back on page 656 and the back of my hair prechemo on page 651. Toodles!!
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Felice-your hair looks great!!! And, you are beautiful with out makeup, by the way! I think you and I will be finishing chemo both in the month of January-I'm doing 4 rounds of TC with my last January 17. And, I hear you on “2018," I am so looking forward to the new year-nothing like a diagnosis of breast cancer to put life into perspective and to celebrate healing!
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Hi all -
Glad I found this forum! Quick question (I'll keep researching the archives - found a great hair care regimen in an earlier post in 2016). TC, four rounds, just finished second round. Cold capping with donated elastogel caps. FYI - a big cooler, with 50ish lbs of dry ice, brought in my family has worked wonders to get each cap colder than necessary. I started shedding a LOT around day 14 and today, day 22, still thinning. I'm determined to stay the course.
My question has to do with HOW to wash my hair. Was doing it with cool water in the kitchen sink. But that may have contributed to my slightly wavy hair getting knotted and really shedding. Or coincidence. Should I wash in a cool shower (brrrr) with a high shower head, or try the sink again. OR my hair dresser of 15 years has a sink with a cushionto rest my head. I'm thinking a mask over my face and strict instructions on gentleness and using my low ph shampoo may be a compromise.
Thoughts? Thanks ❤️
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lizabeth and mamafelice - you both look beautiful! Congrats on such awesome results!
Metooand you - welcome! I also had 4 rounds of TC... my last was on sept 29th so I am 3 montha PFC tomorrow! I have been slowly moving towards washing my hair normally over the past 2 weeks, and gradually changing to a warm water temp was my first move.... such a relaxing sensation after all the cool water!
Up intil now I had been using a "shower cape" i made out of a 70" round flannel backed, vinyl tableclotb. You can probably find it on clearance after the holidays. I cut a slit from the edge to nearly the middle, and rhen cut about a 4" circle at the end of the slit dor my neck. I put it on and rolled the front edges together, then used small binder clips to hold it shut. Covered my torso and kept most of the water off my legs. I would do my hair first, then turn the water temp up, take off/wring out the cape and finish my shower. I just threw the cape out last week 🤗🤗🤗, but think I posted a photo already. I'll see if i can find & post which page.
Happy New Year everyone!
Willow
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the photo of my shower cape is on page 640
willow
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I’m 6 months post chemo and I’m losing my eyelashes the second time. I lost them 2 months pfc (August) and now again in December. Just in time for New Years Eve! I’m using latisse type product and castor oil periodically. Has anyone else had this happen to them?
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MamaF - your hair looks awesome, I am sure you can tell the thinning, however you have so much of it! I am envious.
Liz - almost there. You have got this -- you look great and I love the smile.
Willow's shower cape wins the award - I remember when she originally posted it and I thought - I need one of those in my life. So creative!
Happy healing & Hair growing everyone.
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For my thick, curly headed friends for whom Kendra leave-in conditioner still leaves you with frizzy hair, I would recommend Silk Elements Coconut Heat Protection Spray. Not only did it reduce the frizzys, but it made a HUGE difference in my ability to comb thru my hair.
Willow - thanks for asking how I'm doing. I'm 5 weeks past my 6 week TCHP chemo regime. My hair has thinned, but I have no bald spots. The thinning definitely slowed almost exactly 3 weeks after my last treatment. No one notices a difference in my hair, not even my daughter.
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sjane - congratulations on being DONE!!! and such great capping results!
Willow
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Wow, MamaFelice and Lizbeth - Both of you are looking great! SJane - Congrats on being done, and on having such great success!
I am 32 days out from initial chemo, with 2 out of 6 rounds of TCHP completed. I've continued to have significant shedding since about Day 18, which has been extremely discouraging. Since my hair is wavy, it still looks passable on the sides, but there is definitely visible scalp on the top, much like Travelgirl's wet photo even when my hair is dry.
I figured out yesterday that I had seborrheic dermatitis of the scalp, which is probably the reason for the ongoing shedding. Perfect; another health problem to deal with that is making me physically uncomfortable (scalp itchy and sensitive) and compromising all the hard work I've been doing to save my hair. I've been a little blue over the past few days as a result, but at least now I have an explanation and a game plan.
Did a pre-shampoo application of apple cider vinegar/water, which did a pretty good job of removing a lot of the flaking and buildup and also reduced the itchiness. Got in to see my dermatologist and was prescribed a topical steroid solution to apply to my scalp. I am hopeful that getting this under control will save most of what is left of my hair.
I plan to continue cold capping, but also went ahead and ordered the wig I had "on hold," as well as a beret to cover my bald spot on a limited basis.
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Magari, so so sorry to hear about your scalp problems. I hope the vinegar/steroid combo will save the day. I had a big hair setback a few weeks ago (which I'll post more about it when this is all over). My hair seems to have survived it, but I know how demoralizing it can be. It's so unfair that after everything we are going through, and how much time, effort, discomfort and money we are putting into capping, to have even more roadblocks put in front of us. Rooting for you!
MeToo, I run a hot bath to keep my body warm, and wash my hair when I am ready to get out. I use a handheld shower nozzle with a gentle spray and lukewarm water, while still sitting in the hot bath. the shower cape sounds like a great idea as well!
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Metooandyou -
I have a large bathtub and fill with warmish water then lie down in it letting my hair swirl in the water. Then I sit up and wash it then lie back down gently running my fingers through it. then sit up and apply conditioner. Then back down letting it swirl around again. Then I sit up and use a cup and rinse with clean, warmish water. I found that I could get it much cleaner this way than in the shower.
I finished my 4th and last Taxotere/Carboplatin two weeks ago. Used Chemo Cold Caps and essentially lost ZERO hair. I have flat ironed it and used a curling iron on it a few times lately (not going near the scalp) and have used a little hairspray over the holidays. I'm thrilled with my results!!!
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Hello,
This is my first time ever joining a discussion forum. Thank you for being here.
I am 57 (getting my port on my 58 birthday). I live 1.5 hours away from Wake Forest Baptist where there is a Dignicap. I have an appt. there soon. My oncologist locally is wonderful and has encouraged the use of a cold cap, but there is no machine there, so I would have to rent from Penguin or Arctic. I am triple positive. Long hair my entire life. Thin hair. Taxol (12 weeks, once a week) and herceptin every 3 weeks.
I don't have any questions at this time, but I am finding this forum very helpful. Thank you.
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Welcome, NLH! We're glad you've joined us here, and we hope you find the support you need. Best of luck on your port placement!
The Mods
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Hello everyone, I am on weekly taxol (12weeks) and have been using artic cold caps. Tomorrow is treatment #4 and I am so nervous because I heard that hair loss starts at tx 4. I just really hope this works! Did any cold cap/taxol users lose a lot after a particular treatment? Im so worried I' ll start shedding and not stop, my hair is fine and thin as it is!
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Shay, most on weekly taxol don’t have a “big shed”. I didn’t. I lost very little hair during or after treatment. In fact, when I finally went in for a hair cut, my stylist told me he thought my hair was actually thicker than before! Just keep on with what you’re doing, and you will do fine.
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hello! I will be starting taxotere, carboplatin, herceptin on January 12th, and was wondering if anyone had to deal with post partum hair shedding as well? I can already tell my hair is way thinner than before, mostly around my hairline and temples. I’m going to use the penguin caps, but I’m wondering if I will shed more than the average cold capper or if I will become one of the 5% that this doesn’t work for? Going to try my best! Finally found a place to guarantee dry ice for me. I think I’m ready!!
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