Cold Caps Users Past and Present, to Save Hair
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Kthielen- thanks! I don't feel like I have much hair and it feels like "troll hair" now. Lol. So, I don't do anything to it. Sometimes I blow dry the ends until my hair isdamp just to speed things up. I use a product called KMS Curl Up. It brings out the natural waves in my hair. Other than that, I don't do anything to style it. I miss the days of hairbrushes and straightening irons. Hopefully soon....
I did notice my hair has grown an inch since I started chemo. I got highlights about 2 weeks before I started and they have grown out. I was kind of surprised. I assumed my hair would stop growing. Also my nails have been growing like normal.
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sarah- I started losing hair around day 23 after the first chemo if I remember right. It started very suddenly, too. One day I wasn't losing hair and the next day my comb was full of hair. This lasted 3-4 days then suddenly stopped. I think anything from 18 days on is normal. If you make it to 21 days and you aren't bald, than it worked. Try not to freak out too much if you start pulling out hair. I lost A LOT and it's turned out fine.
The same thing happened after this last shed but to a lesser degree. All of a sudden I had a ton of hair in my comb and then 3 days later it finally stopped.
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First, Runner70, Nola, ViktoryAK -- y'all look GREAT!! Thanks for sharing. Good idea, Viktory -- good pics will be morale boosters.
I'm on day 15 from my first TC round, and just had a big shed. It might have started yesterday, but I didn't do a serious hair comb until today. (My hair is pretty wash & wear -- normally don't do much to it other than run a pick through it on non-wash days.)
I haven't been too worried about shedding so far, since I normally shed a lot -- I started with a lot of long hair, so normal shedding for me looks like a lot of hair. But today was very noticeably higher in volume... Saved it in a sandwich bag as a reference point. Runner70, I appreciate your sharing that your sheds happened over a few days; won't be terribly freaked out if it lasts a day or two more.
Also started my "free Brazilian" yesterday too! Not quite there yet, but well underway. My brows, lashes and nails seem normal, although my leg hair doesn't seem to be growing as fast...
Trixie, and folks who still shed a lot.... I am encouraged to hear of folks' hair growing back more quickly with the cold cap therapy, so hope that it helps you too, even though it's not apparent at the moment. I'm so sorry to hear that initial results weren't what we all hope for.
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p.s. when I got my weekly PICC maintenance yesterday, the nurse seemed surprised that I'm not nauseous. I was nauseous through days 3-4, but haven't been since then, and haven't been taking any meds for it. TC gals, have you been feeling nauseous through the whole interim period too?
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Sarahrae: I am on the same chemo regimen as you and my shedding also started on Day 15. I am now on Day 28 and although hair has thinned it is not noticeable except for a bald spot behind my right ear which I can hide with my other long hair.
SacCat: I never had any nausea either or needed to take anti-nausea meds they gave me, was just very fatigued for 4 days post infusion with some joint pain.
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mine comes and goes. I haven't been the days after chemo but then I'll randomly get nauseated 10 days later. Or if I eat too much I feel bad. Currently my pantry has something in it that smells bad and I get nauseated when I go in there. I threw away all the culprits but the smell is still there. I think just the normal smell of food bugs me now.
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Never had any nausea with TC.
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I have very small bouts of nausea. So small that by the time I get to medication (I am using a cannabis cream that goes on my wrist) it has passed. I have used it twice in 5 sessions.
Is anyone finding that the capping is getting easier? My husband has it down now. It is so helpful! Today I kept asking if the caps were cold enough. They were. I am tolerating it so much better. Not sure what that means.
Day 29 and still no shedding. I think the taxol is a little easier on the hair.
I have decided not to stress about it. I got married last September and we were remodeling (the entire house). We had guests coming in from all over the country. Our guys were so far behind my stress level was through the roof. Did I mention we were living in the house while it was being remodeled?
I was so stressed I was losing hair. Every morning my pillow was covered in long hairs.
So, my approach to capping is to accept that it probably will happen but this too shall pass. It is temporary.
Our infusion center (UCSF) is full of people with all kinds of cancers. Infusion day is a huge reminder that there are so many people who have horrible forms of C and I am filled with gratitude that I have a curable cancer that resides in some cells in my breast and a couple of lymph nodes.
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SisanBP, So you also on weekly Taxol? How many times did you do? Its seems I am just a bit behind you.I did 4 Taxols it's my day 23 past first chemo . I do it on Tuesdays. Worrying when is the shedding will start. I asked my MO he said usually hair starts to fall between week 4 and 6. But nurse said week 6....Hope caps are working...I am worried if it works every day. Yes..yes..I know it's just hair but it keeps me distracted from other thoughts......tomorrow is my hair wash day. Will see....
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Thanks SacCat and Heidi! Second day of shedding(day 16), no bald spots yet, hangin' in but wig shopping just in case. also, I was super sensitive to the chemo drugs and knocked down by the neulasta. Seems likely that the all of my SE will be stronger than average, hence the wig shopping
and yes, I have also began my 'free brazillian' process, crazy! eyelashes and brows seem to be hanging tough for now.that being said, the nausea for me hasn't been that bad, but my appetite went south on day 2(my mouth feels ridiculous!) and nothing has sounded or tasted good. mild nausea here and there.
big thanks again to all of you for your strength and humor!!!
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To all Taxotere/Cytoxan users: Was the dramatic shed 15-23 days after the first infusion repeated after the subsequent infusions or was the shedding "constant" or slowed down?
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Heidi16,
I had the one dramatic shed during that first treatment time frame you mentioned around days 13-21. After that, shedding during chemo slowed way down and stayed consistently moderate until I finished chemo. I did continue to shed gradually for about 12 weeks pfc, but nothing ever came close to the sudden dramatic onset of shedding after the first treatment.
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victoryak,
I'm loving the funny chemo photos! I can't wait to see your next one! 😁
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Wildflower, thank you. I will ask my son to do one (if he comes with me ) next Tuesday. I hope more girls will post pictures to cheer us all up:)
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Hi everyone,
Just finished Round 3 and have about another hour of cold capping at home. I took some before/after pics with using Toppix which completely covers the wreckage from Rounds 1 and 2. You can't even tell or see it with the Toppix.
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Heidi 16 - I'm on TC+H, I started pre-shedding about 14 days after Round 1 and it got more profuse at day 22. After Round 2 it picked up and then by day 30, most of the shedding stopped. I even had a wash day without many hairs. So we'll see how Round 3 goes!
Susan BP Well said, me too...It is getting easier - the prep anyways, much less stress. My hubby is stellar about this. Its still a grind for me.
What I get from reading all the posts is that there is no straight up formula about the shedding right? We're all different. The reality is that for most of us, our hair with thin, thin, thin and some of us (lucky me) may get major bald spots. But we all get to use the remedies like Toppix, caps and such. And another gain is our hair growing back sooner, half the time of those that don't cold cap. But its work and I will be celebrating in 9 weeks sending back the Arctic Cold Caps and getting my port taken out! 3 more treatments to go.
And here is me today, at the half way point.
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Here's my funny photo! My hubby shaping a cold cap for me. Here's to all our partners and helpers!
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Lol! Anniekaja, anybody that will put an ice cap on their own noggin to help you out is a keeper! 😁
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Wildflower - well he has his moments but he's a keeper!
Viktoryak - LOL Love your ears in your photo!
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Thanks all for the nausea feedback. I had cut out dairy (fat -> estrogen), but started eating non-fat, organic Greek yogurt over the past week and noticed that my gut seems a lot happier.
Anniekaja, thank you so much for posting that pic of the Toppik help. I'm sitting on the couch stroking and finger-coming my hair, and collecting a huge, huge pile of hair (and crying a little).
Your pic looks SO great!!! I'll go ahead and order the Toppik now so I'll be ready. Hear hear re: all the great hubbys out there performing these labors of love. Someone's (Viktory's?) husband said "it's my hair now too"... and I love that. So sweet, taking on our crowning glories so we're not alone in this.
Am grateful to all of you too; we're not alone in this. xx
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Anniekaja, thank you for sharing pictures! You husband seems to enjoy cold capping
SacCat, yes, it was my husband saying it about hair and btw he was against cold caps bcs he thought it is pain in the ass but now he is doing his best to change them every 15 min. and with ACC it is a work out.lol . He has to stretch them and make sure they right temperature. Last time I overdid on dry ice. I usually get my ice every Monday for 2PM treatment on Tuesday. When I opened cooler on Tuesday morning I noticed a lot of ice evaporated so I figured i need more and on the way to treatment I stooped by ice company and got 2 more pallets of dry ice.. When we go to hospital caps were too stiff and too cold this time.
We had to get rid of a big palet of ice when we were in the hosptital bcs caps were freezing super cold and impossible to work with them. We made my 20yr old son to run downstairs to the street of Manhattan to get rid of the big ice pallet.. I wonder where he disposed it..lol forgot to ask...So it is a team work cold capping a lot of effort. I hope it will work for all of us... I am on day 26 after I started my Taxol, had hair was today I see a bit more hair shedding then usual but not dramatical change. Plus i am pretty sure its not time to loose hair yet, since I can see my hair still growing in other places....
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Love your pictures Victoryak! And Annie you are looking great! Toppik has been a lifesaver for me as well, I have pretty much the same bald patch as you as well as very very thin hair all around, but with the toppik nobody seems to notic
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I have the same bald patch too, it's just a little off to one side so I can cover it mostly withhair. Toppix covers mine great.
Has anyone had any experience with all the fluid weight from the taxotere? I've gained about 10 pounds between my 2nd and 4th infusion. When am I going to get rid of all this fluid? It's in my face and my abdomen. I feel/look pregnant.
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Thanks everyone and I'm so glad that there is a sisterhood of the bald patch going on! I might have some nice photos taken and send them to Toppix! The cold cap companies should promote this product.
SacCat - I decided to keep all my hairs and do some kind of art project or ritual with them when this is all over. Hang in, it is hard when you see the changes but you get used to it. We have a lot of hair and you'll like fine with it thinner. Watch people and a lot of people have thin hair. That's super you're getting the Toppix, its amazing.
Cody - thanks! And thanks for being the way shower about Toppix!
Viktoyak - that's funny about your son dumping the ice in Manhattan! lol My hubby sits on the hats and then shapes them onto his head as the temp goes up.
Runner70 - I'm on TC+H but don't know anything about fluid retention. Are you exercising? I've gained weight but its from huge post-steroid appetite. You're body will get back to normal when your done with chemo.
Annie
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Wildflower2: Thank you! I hope I won´t have another big shed again either!
anniekaja11: Thank you, that is very encouraging! I am on Day 30 today and will see how my hair wash turns out tomorrow. The Toppik coverup looks great! Do you use the spray applicator and/or the hairspray as well?
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Runner - make sure you speak with your onc about the fluid retention. Sometimes they need to prescribe diuretics to help, sometimes they need to run blood tests and/or heart tests - you just want to be sure he is aware and checks out possible medical issues that need to be addressed.
My hubby was a saint throughout cold caps for me - forever grateful for that.
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I was running a lot and ran a half marathon right before chemo 3. I'm too anemic now to run for any length of time but I walk 15 miles a week. The water weight I'm talking about is called capillary leak syndrome. It's a side effect of the taxotere and I'm told it takes weeks to months to resolve but I was just wondering if anyone else was going through this and could give me a better idea. I'm miserable.
I think I'm eating less than normal but I'm not sure. It depends on the day. A dietitian told me I should be getting 1,700 calories a day because your body needs more to recover. I probably go over this but not enough to account for gaining 10 pounds in 6 weeks. It's disconcerting.
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dance trance- thanks. I didn't see your post before I posted! Yes my dr knows. I've been having a difficult time with hydration because of it. Today I went in and got 2 liters of saline and felt so much better but a few hours later my abdomen got bigger without me eating anything. Anyway, it's not anything life threatening and there isn't any fluid in my lungs. I just want to be able to wear my jeans again and look like my old self. Don't we all, right
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Yeah runner I hear ya! I look back at my pics post chemo, even with my hair, and think "Oh man, I looked bad". Sometimes I forget just how sick it made me feel and look.
It really takes its toll - some of us more than others.
I finished chemo in June 2012, and in pics from Sept/Oct 2012 I still looked pale as hell. My red and white counts didn't come back to reasonably normal until Jan/Feb 2013. That's when my skin/color, etc. all started really looking more like "me"...and I truly felt more like myself. I mean by 6 wks post chemo I felt tremendously better, but it wasn't until about 6 months post that I REALLY felt like my old self. I was back to dancing about 2 months post chemo, but really couldn't push it to my previous level of cardio for several months after that.
That was me...chemo hit me hard, even though I am very physically fit. I do feel a big part of it was it sent me into instant menopause at age 43. Others bounce back much faster. It really varies from person to person. One of my friends I went through chemo with is a triathlete. She was back doing triathalons sooooo fast afterwards. I was so impressed! Wish I could give you a better prediction!
The key is - it WILL happen!!! I feel fabulous now, have been totally back to my normal self for years!
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Dancetrancer, thank you for sharing your experience.. I only did 4 Taxols and 8 more to go. So far it is not as bad. I feel tiered or lightheaded sometimes, still have my hair...too early yet for them to fall on weekly Taxol. I exersise every day now and I am thinking about hiking tomorrow. before starting chemo I expected to be in the bed sick all the time but so far I kind of have almost a normal life.. what scares me is expectation...what if it going to get worse...I read stories and I am waiting for IT to happen.. I am also scare of weight gain..and hair shed that my MO said it happens around week 6....I wonder if any ladies here had an easy experience with chemo .... I know it's a bit off cold caps topic..But you ladies such a great group here. Please share your stories.
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