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Cold Caps Users Past and Present, to Save Hair

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Comments

  • heidi16
    heidi16 Member Posts: 44
    edited August 2016

    Need to vent. 29 days PFC...sucks to have to wear my long hair down in this hot humid weather, hate feeling strands of hair on my arms and shoulders all the time. Hair is allover the house! Everytime I touch my hair at least 3 strands come out. When will this aggressive postchemo shedding slow down?

  • JCS28
    JCS28 Member Posts: 92
    edited August 2016

    Hi everyone! I just wanted to report that I'm 3 months past my last chemo, and my hair is doing really well! I've started washing in the shower again. And I just spent a week at the beach in the sand, salt, sun, and chlorine, and my hair is fine! Yeah! I still haven't had a haircut, but I think I will do it soon. Also, my eyebrows and eyelashes are nearly back to normal. I did use Latisse, and I think it helped.

  • Positivepower11
    Positivepower11 Member Posts: 81
    edited August 2016

    JCS28 thanks for the post gives the rest of us hope.

  • Runner70
    Runner70 Member Posts: 177
    edited August 2016

    JCS that's great!! If you feel comfortable, post us a hair pic! But if you feel weird about it, no worries.

  • JCS28
    JCS28 Member Posts: 92
    edited August 2016

    I'm not very good at selfies, but here you go! I washed it and air dried it yesterday. No styling. Hasn't been cut since January. But I'm very, very pleased! Eyebrows are back but I still fill them in just a little with pencil. But I never had thick or dark eyebrows before.

    image

  • windward
    windward Member Posts: 57
    edited August 2016

    Dear All who are suffering from swelling,

    I am a compulsive researcher with the naive belief that the answer to everything can be found on the web. Maybe you all know this already, but there are foods that are natural diuretics as is Apple cider vinegar. Just google natural diuretics and you can find a list of 20 foods. Also recommended are soaking poor swollen feet in epsom salts,and epsom salt baths.

    JCS28' prettiest selfie I have ever seen. You give all of us hope!

    Phaila, about your friend, nothing they can do for her does not mean that no one else can help her.

    Does she know that MD Anderson offers second opinions if you just send them your test results and CDs. Also has she checked into all the clinical studies that are being done all around the country? There are websites that list studies that she might qualify for.

    This is not yet the time for her to go quietly.. If you want information about where to find studies let me know and I can get you some websites. The NY times has just had a series of articles about the work that is being done at various centers using immunology, see if you can find the articles on line.


  • jgab
    jgab Member Posts: 24
    edited August 2016

    It seems like yesterday I posted on this board regarding information on cold caps. I completed 6 rounds of tchp one week ago. My cappers told me they didn't believe that the hair would last too many more treatments. My hair looks pretty thin and ragged. But if someone saw me they would just think I get all dressed up and don't fix my greasy/frizzy hair. I lost the most around my ears. I so miss pulling my hair up in the summer:(

    It was definitely stressful, but worth the time and energy to be able to keep my chemotherapy private when I didn't feel like sharing. But I can completely see someone not wanting the hassle. Now that I am done though...it is nice not to have to re grow hair!

    Phalia and runner, I wait for your posts. You two have been keeping it real on the cold cap front. I am so sorry about your friend. I am afraid every minute of every day. Now that treatment is over, I feel like I am not doing anything. I did get a shot to shut down my ovaries and started letrozole. Let the fun begin!

    Cold capping does work. And you have the luxury of not having to regrow hair at the end of treatment.

    Hope everyone is well and peaceful today:


  • car2tenn
    car2tenn Member Posts: 132
    edited August 2016

    Note to those who read that you can send in your information and get a second opinion from MD Anderson. I had horrific results from that line of thinking.. I played their game and sent every piece of information that I owned. I went there in January of 2016. 2 days of rudeness and hell. Never again. Others may have a different result but I went with 2 family members and we were all shocked and pained. It was an expensive and rude ending to that line of hope...I will be happy to answer any specific questions including the name of the callous and mindless female MD that I was assigned to (Jennifer Litton MD ) She would be too brusque and mean to treat my beautiful little doggie. now you know. Carolyn from Music City

  • windward
    windward Member Posts: 57
    edited August 2016
    Hi Car2tenn,

    Your experience with Anderson's second opinion sounds barbaric. How could they be so awful to someone turning to them for help. I will certainly not suggest their program to anyone else, ever again. Did you ever post about your experience to any message board or send a letter to. "Cure Today " Magazine? Do you know the magazine? It is both hard copy and online, and always has info about trials and new treatments in the pipeline.
    I hope you are responding well to your drug regimen. You have been through a lot, and are clearly a trooper!!
  • amyabs
    amyabs Member Posts: 29
    edited August 2016

    JCS28 - looking great! I have to say I am jealous, lol. I can't wait to wash my hair in the shower again or heck even wash it without losing 500 strands, lol. So glad you had such great success! It really does look good and I can't believe how nice and filled in your part is! My natural curl is helping disguise some of my thinness but it also leaves me significantly frizzier, lol.

    heidi16 - I almost hate to type it but I am 37 days pfc (started just a week before you on 4/19) and still shedding aggressively. Not sure what in the heck is going on but it has to end soon---- I hope! Unfortunately, I have lost more in post chemo shedding than I did throughout all of the treatments.

    phaila - I seriously wish we knew each other IRL and we could go out for drinks rocking our troll hair!! The hot flashes and sweats have been my only real Tamoxifen side effect (although maybe hair thinning too, who can tell???) - my period stopped after my first round of chemo and hasn't returned. My MO told me it could stay away with the Tamoxifen or could start spotting consistently - I am almost hoping for staying away! I am so sorry about your friend. I truly think that is all of our worst nightmare at this point. I have no idea what you can say - I am sure just listening is somewhat a comfort at this point. I would be at a total loss of what to say as well.

    Runner - so glad the hair is doing well and yay on the regrowth! I am hoping to see some of that soon! I am sorry about the swelling, my abdomen and face are still swollen too and I don't know if that is the new normal or will eventually go away. I agree, this whole year has been surreal. I still can't quite wrap my head around all that has gone on and the surgeries that are yet to come.


  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    Has anyone taken the red devil and used cold caps? How well did it work?

  • [Deleted User]
    [Deleted User] Member Posts: 14
    edited August 2016

    Heidi,

    I took epirubicin, also known as the Red Devil, not sure if that is the chemo you mean...but I have done it with cold cap and had good results so far!

    Dolly

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    doxorubicin

    I think that is the "A" in ACT, that is what my doctor wanted me to take. It has a red color. If my cancer returns I want to do cold caps

  • Positivepower11
    Positivepower11 Member Posts: 81
    edited August 2016

    Meow I am now doing AC , 3 treatments down so far on AC , its been fine, before that I did 4 of Taxotere but not ACT together.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    I hope your remaining treatments go well. I think my doctors was talking 12 weeks of those drugs. At the time I was sure it was not for me. But I hear of many people that have gone through it fairly unscathed.

    My recent scare has caused me to think of what I would do if the cancer does come back. Thanks for your input.

  • phaila
    phaila Member Posts: 177
    edited August 2016

    my eyebrows have always been thick and dark. I'm like that girl that had blond hair and brown eyebrows and you either got the "do you dye your hair blond?" Or the "do you dye your eyebrows brown?" Like who would dye their eyebrows a different color??? Right??! Anywho, mine grew back SOOOOOO brown and bushy! Like almost black! Like a big dark brown caterpillar! Kinda crazy! What's also crazy after all these months of fragile hairs everywhere I now need to pluck (haven't found a tweezer) my brows and it's causing major inner turmoil:p I mean to actually pull hairs out -ON PURPOSE- seems like such an alien concept!

    Ps. My order for that FAST shampoo came today. Damnnnn. It's expensive. I hated spending that when I could have gotten a bottle of the delicious biolage shampoo❤️ And now I want to order some of that NIOXAN shampoo. A woman in my fb group posted pics of her amazing hair growth using that shampoo. She bought it at Walmart in the salon. Here is her pic she posted. These pics are 2 weeks apart. It's the only way I can know what my growth might be like. I have no bald spots so I have no way of seeing new growth. So I'm hoping it's under there somewhere!

    Here's her pic

    image

    Pretty amazing right?!

  • Runner70
    Runner70 Member Posts: 177
    edited August 2016

    omg Phaila! You asked who would dye their eyebrows a different color? I do! My hair is very light, especially my brows so I dye them light brown. Otherwise you don't really see them and I look odd. Funny thing though, now that you mention it, my new brows are coming in darker. Fine with me. I just hope we can still be pals even though I'm one of "those people". I don't dye my girlie hair if that makes you feel any better about who I am. 😃

    You asked awhile back about tamoxifen's effect on periods and the answer is everyone is different. Some keep getting theirs on schedule, others are sporadic, and some don't get them at all but that doesn't meant you can't get pregnant so be careful! Getting pregnant on tamoxifen can cause severe birth defects.

    I haven't had one since my first chemo when I started Lupron shots to try and save my fertility. My night sweats are completely gone. I guess I haven't had any in 6 weeks. They were awful. Chemo is bad enough but waking up sweaty when you need sleep the most really sucks. My hot flashes have decreased but when I do have one, it's a big bad one. I don't know what that means. I just wasn't ready to be slammed into menopause if that's what I'm in now. I still hadn't given up on having kids. I always wanted them but it just never happened for me. If only I had known this was going to happen. ~sigh~

    It's been a rough day. Lots of stuff going on in my head. Nothing shows you who your real friends are like a serious illness.

  • phaila
    phaila Member Posts: 177
    edited August 2016

    Runner- you freak!! Justkidding!;)

    I think I should have said "who would dye their eyebrows dark brown when they have light blond hair" 😜😜😜 Right now if anyone thinks I dye my brows they will think that I dye them brown AND gray! I mean, come on, that's SO not a "thing" people

  • phaila
    phaila Member Posts: 177
    edited August 2016

    I'm sorry Runner:( Are you still goingto try to figure out a way to have kids? I really hope so. I had always wanted a 1/2 dozen but had such a horrific labor that I said "eh, one is just fine" ;p

  • viktoryak
    viktoryak Member Posts: 238
    edited August 2016

    runner and phaila, you are sooo funny😍

    Runner, I am so sorry about your friends..I have some huge dissapointment with some of mine. While it shouldn't bother me ( after all cancer should have thought me not to pay attention to little things) but it still bothers me a lot!!! I just can't accept it.

    If it makes you feel better share with us, after all this group is your friend now.it helps to vent... That's how I feel. And I wish we all girls can meet up somehow ..mAybe some retreat somewhere?? Maybe we should plan it?

    I am on 3 days vacation at Finger Lakes, NY. Celebrating our wedding anniversary and end Of chemo. I am now 15 days pfc. I always wonder PFC means not just past final chemo but past f..g chemo...That's how it's always in my head! ...

    I try to relax, not to think of cancer but of couse it would not let me. My legs Still swollen. I bought compression knee highs and try to sleep in them... Yeee...so nice to sleep in heavy socks especially when you hot with night sweats;(... When is it going to stop? I walk like a Pinguun...and sweating tones of water in bed at night. Hate it... My crazy hubby made me climb up the hill out of hiking trail yesterday on our hike...I thought I will kill him...it was such a chalenge with my puffy legs...but I did it😎

    It is a nice spa ( my first spa vacation) with great facilities. But I can't use sauna or steam room because of hair....it will overheat! But I went to Jacuzzi yesterday and I thought my hair ok( they short) they got wet a bit..I didn't realize it, but my husband noticed it and started to scream:" get out your Hair wet! Don't ruin in its my masterpiece!" lol...he was my capper.So, how long till we can use spa anscsteam room and wet hair in pools? Anyone knows?

    I also have intimate question...I know there a group for it but somehow I feel those other groups not the same as this one and I really feel connection to cold cap girls...

    Ok..here I go: does anyone have now a painfull intercourse? For me it's painfull at the beginning of intercourse.for a while.then it gets normal.. I don't think its dryness... It makes me so sad.... On the top of what we go trough now this......

    And hair. It what this group for, they so far ok..I am happy with result..not happy with my hair style .. Lol. I wonder if they still have a chance to shed more then now?

    That's My early morning vent...😍

  • Runner70
    Runner70 Member Posts: 177
    edited August 2016

    hey victory, how great you can get away! I dont know about the sex question. I'm not in a relationship. Lol. My boyfriend and I broke up a week before I got diagnosed with cancer so I haven't tested those parts out with this new menopause body! I have no interest in the work a new relationship requires. I have nothing to give right now.

    I bet your hair will be ok but omg be careful! You aren't that far out! I'm over 2 months out and if I wear a sleeveless shirt, I can feel hair that's fallen out dangling on my arms. When will this ever stop! I noticed my cleaning lady quit using her vacuum when she comes over and I have a feeling it's because of all my hair it was picking up. Gross. But I'm so excited because I'm getting my first highlights on Saturday! I haven't had any since February so I have a strange look to my hair. I hope it lifts my spirit.

    Phaila- I think you can dye the grey out of your brows. Too bad you don't live in Oklahoma City or I would have you over and dye them. You sound like you could be one of my posse here. Do you have any new hair coming in yet? I still can't figure out what color mine is. It's varying length so clearly some of it started coming back way before my last chemo. Another reason I'm glad I cold capped! My newest hair is about an inch long. I ran into my oncologist yesterday waiting on my radiation and she wanted to see my new growth. She's still amazed the cold caps worked so well. I wish everybody could have my oncologist. She is wonderful.

    Now if my damn joints and muscles would just get better. Omg they still hurt so bad. I think my facial swelling is better. My jowls are smaller. My medicine cabinet looks like I live with an 80 year old.

  • phaila
    phaila Member Posts: 177
    edited August 2016

    JCS28- you have like REAL HAIR! So happy for you:) it looks amazing

    Victory- sadly I can't help you on the sex front. My guy and I are more like roommates

    Honestly I can't tell if I have new hair or not. I mean I must right? But if I look at the one spot I would say is the thinnest I see nothing like little black specks like everyone says to look for. But then again I would be way past that growth stage so maybe I missed it? I dont know....

    Time to go take my shower using the FAST shampoo for the first time. Hope it works


  • jgab
    jgab Member Posts: 24
    edited August 2016

    What is fast shampoo? You have to let us know if it works! I need hair growth in a bad way! I can't even completely explain the ugliness of my hair. I am trying to be grateful, but when I look at pictures of myself before....it makes me so sad.

    Victor yak....I am going on getaway this weekend too. It is our anniversary and celebration of final chemo. With you on pain and sadness of sex. Worried anniversary trip might be a slight let down for someone!

    Runner....break up before diagnosis....come on! You have way good positive things coming your way now! You are done with all the bad stuff!


  • Icandoallthings
    Icandoallthings Member Posts: 28
    edited August 2016

    Hi all!

    I am being interviewed this weekend, and have to do my hair.

    I'm considering straightening it. Has a one done it? I'm scared... But I have to look decent for this

  • Runner70
    Runner70 Member Posts: 177
    edited August 2016

    thanks, Jgab. What is it with men, anyway? In the course of my treatment, I've been asked out by more men than I have been in the last 5 years! I'm seriously not kidding. I think they now see me as vulnerable. Me, the tough as nails doctor has a soft side. Well of course I do. It was always there. It just wasn't so close to the surface. But talk about bad timing....what are these guys thinking? "Why yes, my belly looks like I'm 7 months pregnant and I'm all sweaty from my last hot flash but sure I'd love to go on a date.." LOL. Men. All I need right now is a man to take care of besides myself. Actually I'm relieved my boyfriend and I broke up before my diagnosis. I don't have to worry he stayed out of guilt. I know I sound sarcastic. I guess I've had too much bad luck with men!

    I've never heard of fast shampoo. What's in it? I just took biotin. My nails always looked great all through chemo. But I have a vertical line across them with each chemo. Kind of like rings on a tree.

    Phaila- if you don't have bald spots it would be hard to see new growth. I bet you have some by now! I only know I do from the bald spot on top. It looks like that 70's shag carpet. Yuck.And I didn't realize it but I lost hair along my sideburns areas because I have hair growing in.

  • revnet
    revnet Member Posts: 17
    edited August 2016

    Cold Cap update

    Going for my 3rd TC in the morning. My hair is holding strong! So I am now 6 weeks out from my first treatment. I texted with Arctic Cold Caps this week and they mentioned that I am 'past the hump'.


    I did shed for about a week after starting the day of my 2nd chemo. So 21 days out from my first treatment. Then it has pretty much stopped.
    I am expecting more this week, but I am feeling really positive after freaking out a few weeks ago over the shedding. I have no bald spots. I even got a hair cut last weekend.

    I do wear VERY short hair, like a man's barber shop style on sides and back with longer on top and have very fine textured hair. I think this might be to my advantage as there just isn't a whole lot of thick hair as a barrier to cooling the scalp. No proof of that, but just an idea since I had minimal shedding and still seem to have all my hair for the most part. No bald spots at all and minimal thinning.

    I am so grateful for some of the comments that I've gotten in here. They really helped me remain calm during the shedding process and the info was spot on. So thanks to those who gave me comments when I was asking about that.

    Wishing you all continued luck and success.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited August 2016

    FYI, I got a second opinion at MD Anderson, and my experience was completely different. I had a different doctor. I had a great experience there, everyone was extremely attentive and caring. Please don't think the entire facility is bad based upon one doctor. (Sorry you had a bad experience - that's not right! I would complain about that doctor.)

  • phaila
    phaila Member Posts: 177
    edited August 2016

    I just realized my mindset hasn't been "when I stop shedding" I'm just assuming my hair will all fall out. I literally have 10% left. I hadn't really looked at it from the sides or back until last night. OH MY GOD! It is just disgusting. Straggle weird brown gray pieces of straw. I wish I hadn't looked. Also it is still shedding. There's just not much left. I think this mo th has been really really bad. The only way I can make it through now it to use headbands or sunglasses to hold it up to like fake that I have so much hair I need to hold it back👍I'm not complaining. I'm not bald. It's just this race to have my hair grow out before it all falls out!!!!! 😜😜😜😜😜

  • bab524
    bab524 Member Posts: 7
    edited August 2016

    Hi everyone, hoping someone has an answer for me! I just had my 3rd TC last Thursday. Between round 2 and 3 I thinned a lot on top and developed a bald spot. I've come to terms with it, nothing I can do now. I cover it with Toppik every day and you can't tell its there.

    However, I just noticed yesterday and really noticed today after I washed my hair that I have dandruff. I assume its from the bald spot and other thin areas. Has anyone else dealt with dandruff, and what did you do to help it? I use Beautycounter shampoo and wash my hair 1-2 times per week. I have never had dandruff before. Is there a shampoo we can use that helps? Unfortunately Head & Shoulders has sulfates. This is more distressing to me than the balding since I can't cover up tiny flakes all over my hair! Thanks for any help!

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    babs, I haven't dealt with dandruff from chemo but I did from arimidex. I had been recommended a shampoo from dermatologist over counter, DHS (I think). I would recommended going to dermatologist and have them look. Another time I got like 3 bald spots and it finally went away it was some kind of fungus.

    Good luck. My hair is fine now.

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