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Cold Caps Users Past and Present, to Save Hair

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Comments

  • 7of9
    7of9 Member Posts: 474
    edited May 2016

    I would now evaluate my hair as Dorothy Hamill on crack meets Tom Petty. Well, weekend #4 after starting Taxotere and still no wig = success for me I guess though the bar has gotten low. Problem is this first shed is so bad I haven't really been able to comb or brush even lightly the last two days. Put on makeup, sunglasses and ran my fingers a little through my bangs and got a way with it this weekend. A bunch of friends dropped off all kinds of gift cards for restaurants for my husband, son and I today congratulating me that I'm half way done and to hang in there. It's the little things..... sniff.

  • phaila
    phaila Member Posts: 177
    edited May 2016

    I lay in the tub and just let my hair float around. It feels fabulous and I do it often:) I also wash when I want not following the 2-3 rule. Mostly because the cradle cap is so bad that when it peels hair comes with it and thats NOT good. So trying to keep it moist

    Good luck

  • phaila
    phaila Member Posts: 177
    edited May 2016

    7of9 do the float in the tub thing. It feels so good. You don't have to wash it just let it float all free. Feels great on the sore scalp and aching bones to

  • lydialydia
    lydialydia Member Posts: 12
    edited May 2016

    Today is day 12 since my first Chemo and cold capping. I had a terrible night mare that I woke up bald I actually ran to the bathroom last night to see if I had hair.!!!!!!!!! Ive had no shedding yet. I assume my big shed is coming.........should I expect it any day now? Is it a constant shed? or just when I wash my hair?

    Just to note I used the Chemo cold caps I bought 8 caps from them. I don't need the cooler as I have a freezer in my facility in Manasset, NY. I dropped of the caps a few days a head of time so they can be cool enough. I can only stay in the facility for an hour after my Chemo to continue cold capping. So, I bought a small cooler and pounds of dry ice for the capping to be done at home for a few hours. I made sure the caps were tight. I had my husband push them as far down on to my scalp as possible. I also wrapped an ace bandage around the cap so that it was even tighter. I used the thermometer to measure the temperature of the caps and I did not wet my hair. I started capping before while I was getting my premeds at least 50 minutes prior. I capped in all from 10 am to 430. I bought paraban and sulfate free shampoo and leave in conditioner and stopped all heat and styling products. SO far I hope im doing everything right!


  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited May 2016

    lydialydia I had the no hair nightmare to just before my 2nd treatment I even had one couple weeks ago and I am 9 months PFC. When I was capping I had a constant, even shed and continued to shed evenly up to 4 mths PFC. Good luck with it all

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Girls, I rented Arctic cold caps. Had a Skype training session. I have my first chemo Taxol + Herceptin tomorrow. I am so worried how will the chemo go? Will there be any side effects?

    Besides medical issues My huge concern how will I handle the cap? Besides the cold( that I didn't even feel it yet) when we paractice caps it's so painfull under chin ...I even feel the whole side hurts so much up to a tooth ache where I have an old crown due to a change:( ( didn't have time to fix it before chemo and now it's too late). My husband " invented" to put under chin straps a piece of cardboard in a soft sock. It feels a bit better. But if I try to open my mouth to try to eat it's torture! I tried to stay in a cap for 15 min. Omg it's bad! And I will need to do it for 6 hours Tomorrow. Does anyone has this issues? Or is it only Arctic caps have it and it's their screw up? I almost cried yesterday and was ready to quit but I can't without at least trying after all the money I paid. I am dreading tomorrow.

    Very worried. Any suggestion please....

  • Kazclc
    Kazclc Member Posts: 3
    edited May 2016

    I am using Penquin cold caps. Round 3 of weekly Taxol tomorrow. My husband and sister are an amazing tag team. First session we were so determined definately think we did too tight. I had every headband strap etc!! I had lots of pain(tried putting aloe vera and coconut oil on to heal but had tons of peeling day 10.(no hair loss yet- though I know too early to tell) so yes worry about not cold enough or lose from frostbite!! Used thin guaze 2nd time. My nurses and dr are super nice about it all!! Night before first treatment every grocery store around was completely out of dry ice. Complete panic!!! We were lucky enough to find actual supplier- also welders need dry ice so might have a name. Definately find supply beforehand. We wheel in hospital with coolers and snacks/magazines and make a day of it. About to research silica and biotin after seeing other posts.

  • SusanBP
    SusanBP Member Posts: 73
    edited May 2016

    Quick question: penguin cap users...how do you keep your hair from getting caught in the Velcro

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

    Take the cap off like a "helmet" instead of undoing the velcro while it is still on your head. That helped me significantly.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited May 2016

    Victoryak,

    I used the penguin caps which were at first uncomfortably tight under the chin as well. I got a pair of the thick, fluffy, "cozy" lounging socks and cut off the toe and then slid the sock over the strap. It provided enough padding and was really easy to thread the sock back onto the strap with each cap change. I don't know what your straps look like and how they fit, so if a sock doesn't provide enough comfort, you could try going to a place that sells the insulating foam wrap that fits around plumbing pipes. Maybe around 1.5 inches in diameter. It is slit down its length to allow a person to pop it on over the pipe. I think that might provide you with a nice, rounded "bolster" that should cushion your chin and yet flex enough to maintain close contact with your scalp. Try Walmart, Home Depot, or Lowe's. Good luck tomorrow and let us know how your first session went!

  • SusanBP
    SusanBP Member Posts: 73
    edited May 2016

    Thank you for the suggestion! I have also heard to get a wig cap. I think Penguin suggests that.

    I am going to try sucking on ice chips this time around...with the cold caps. Good thing I am a former Minnesota girl and love cold. It helps but I am still saying, those first few minutes are brutal.

    Also, took a good hike this morning. Stayed in the shade and went early and my head didn't get super hot. I am sitting here with a bag of frozen peas on my head to cool down. I bet I look great!

  • phaila
    phaila Member Posts: 177
    edited May 2016

    I went and got wig caps and some like ghetto caps and they were all kind of tight and I never used them. I ended up getting plus size pantyhose and used the waist band part down to where it connects to the legs. It worked perfectly!! Kinda weird Looking but not one piece of hair got stuck and was comfortable:)

  • zinny
    zinny Member Posts: 169
    edited May 2016

    Susan - I exercised when it felt good. I am a head-sweater and so when I went at it on the elliptical, my head would be soaked almost like out of the shower. I was also unwilling to give that up. It might be part of why I shed a lot, but that is ok. It is amazing that I can still walk up hills in spite of all of this, granted, not as fast as usual!


  • SusanBP
    SusanBP Member Posts: 73
    edited May 2016

    zinny...that is great to hear. So far I have been feeling much better than I had expected. And I am figuring out ways to keep my head cool

  • Trixie16
    Trixie16 Member Posts: 20
    edited May 2016

    Happy to report I completed Round 5/12 today and still no major side effects. I have been supplementing with B6 and putting an essential oil blend on my feet every night to ward off neuropathy.

    Hair shed is still concerning. I shed at least 100 strands every morning and massive amount on Friday...hair wash day. Most of my loss is on top and at crown and bald spots behind the ears. Today I made sure my caps were extra cold and continually molded it to those areas. I am using the gel bands as well. The area behind my ears had been itching for awhile and I do wear cheaters so constant rubbing in that area. Friends says can't really notice loss unless close enough to cap. Think I may try toppik for crown area which shows most thinning.

    At least it's a beautiful day here in MN. Peace, joy and love to you all.

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    hi ladies, did my first Taxol + Herceptin chemo. Used Arctic cold caps. What a pain in a butt...;)

    I started premed around 2pm then 1 hr taxol + 1.5 hr hereptin. Changed caps every 17 -20 min .last cap was removed at 9. I was so happy when it was out... What a long day. On the way home we stopped once on the street in the city and once on gas station to change. My husband did it on the back seat of the car. Since we left hospital late there were no traffic!

    I am so afraid we screwed up somewhere...and if I did the right desission about Arctic. Seems all know only penguin.

    My nurses even asked if we made those ourselves..

    I just praying they also effective as penguin.

    The under chin strap such a hassle even though I put protective padding. I couldnt eat just drink all the time.

    Caps, please work....after all the hassle. ..

    P.s. ladies a few off you mentioned topic to cover bold spots...what is it? Is it like a topper wig?


  • Trixie16
    Trixie16 Member Posts: 20
    edited May 2016

    Viktoryak- Toppik is a keratin fiber spray that you get in a color to match your hair. It is lightly sprayed on balding areas to cover the scalp and temporarily mask the balding appearance. Google their website for more information and product video.

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Trixie,16, Yes i checked it. thank you! Hope will not need it....I visited a wig store prior to chemo and they have such thing as topper (not full wig but partial) . I was wondering if that can be an option in case i get bold spots. I have short hair up to my neck and i believe most people use caps for long hair. Now i am thinking did i do a right decision with going through so much with cold caps.. Should i just gotten a cool wig. They had so many nice so much looking like my hair in the store.... and they styled so nice compare to hair mess i will have now without any products.But what scared me the most is for myself to see me without hair in the morning. I don't know if that is stupid but it was scariest thought for me.Ii guess to late to go back now ... will keep trying caps.

    Another question, can anyone recommend how to shape elastogel caps.? when we remove them from freezer they not shaped right and my husband tries to mold them with his hands. However they are some not even not to soft on the top and i am afraid it is where i will get bold spot since it is not be so attached to my head. Any recommendations?

    Thank you, ladies!!!

  • Trixie16
    Trixie16 Member Posts: 20
    edited May 2016

    Viktoryak- I do have long hair which is a big reason why I chose to cap. I am shedding so much however, I too, am wondering if it was a good decision. I have 7 rounds left so I plan to continue and see what I'm left with in the end. I have heard about topper wigs and might have to explore that option as well.

    As for molding your caps...you have to be careful if your husband is doing too much handling of the caps as that can warm them up significantly. I use penguin caps but even those don't mold well at first then they are too cold. After I get them on my head, me and my cappers do a lot of "head hugging" where we continue to hug the cap to the scalp to continue to help mold closer.

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Trixie16, What chemo regiment are you using? I heard caps work better for some then others. I just called Arctic caps and asked for one cap to be changed since it has to many folds inside. They are very nice said will send a new one right away and also they assured me that it works very well with Taxol regiment i am in. I hope so 11 more times seems like to much to me..

  • lydialydia
    lydialydia Member Posts: 12
    edited May 2016

    Good Morning All,

    So today is day 14 since my first chemo treatment no shedding yet but today is hair washing day UGHHHHHHH. Anyway i have a question My friend is starting chemo but only having adriamycin she having 3 rounds. How are cold caps with Adriamycin? ive read some sonflicting information. I plan on giving her my cold caps for her to use once im done.



  • phaila
    phaila Member Posts: 177
    edited May 2016

    Hi Lydia, it seems like hair falling out after chemo starts day 13-14 but using cold caps the shedding starts around day 17 and lasts well into day 27-30 and then continuous to shed unit you're done but nothing like that first horrible week. Personally I think that first use of chemo cold capping is VERY important. I know if I had been way more vigilant that first time my hair loss would have been much less severe. So when your friend does it tomorrow tell her how super important it is to make super duper freezing contact with her scalp. Good luck to all of you:))))!!

  • Trixie16
    Trixie16 Member Posts: 20
    edited May 2016

    Lydia- Prior to Taxol I started with four rounds of Adriamycin and the cold capping worked very well. My chemo nurse said I would have been bald by the 2nd round if it had not been for the capping. Also, I didn't experience my first major shed until day 21 after my first chemo.

  • cody_mx
    cody_mx Member Posts: 57
    edited May 2016

    hi everyone, I am a week after my second TC treatment, Ive been cold capping, on day 17 after the first round I started to shed like crazy! its been like that since then some days are a little better, some very bad, Im afraid if I continue at this rate i won't have much hair left by treatment 3. Does anyone know if the shedding will be like this from now on? or should I expect it to diminish? How do I know if the cold caps are going to be a failure??

    Ive been using toppik for super thin spots and it works wonders! it even covered my gray hair.

  • phaila
    phaila Member Posts: 177
    edited May 2016

    Hi Cody-my,

    You sound exactly like me! We're going through the same thing!I just did TC number 3.

    My hair is so thin is feels like a veil. It is in horrible condition and it is still shedding like crazy. Thing is there is (to anyone looking) it looks like I just have really shitty looking regular head of hair. I'm not really sure what is going to happen. As of right now I'm just going to make it to my last treatment in 2 weeks and cross fingers that my hair makes it until it's strong again:) here's what my horribly thin hair looks like from behind.

  • sarahrae
    sarahrae Member Posts: 52
    edited May 2016

    Phaila~ your picture didn't upload on my computer... I really want to see Smile we are on the same regimen and schedule. I start on Tuesday. Still feel that hanging onto a good amount of your own hair is a huge WIN! just think, it will start filling in and you will be back to a full(and long!) head of hair long before you would without the caps! Also, I am feeling that the 'privacy', the bit of 'normalcy', and not being immediately labeled as 'cancer patient' by others will be such a blessing. Feels also like I'm fighting the chemo and a heap more active in my treatment~which I think will be a real benefit for my psyche! BTW did you get a port/PICC or are they just using your left forearm? hang in there and thanks for all of your great info on this forum!!

  • phaila
    phaila Member Posts: 177
    edited May 2016

    Hi Sara, I had thought that I had a photo loaded on my phone but didn't. I will take or find one tonight. Seriously the weirdness that my hair is now is just so hard to describe. My hair is usually long and straight. Now my hair is this weird curly black or grey hair. I'm usually a dark blond with gray hairs speckled throughout. Like the hair that's falling out now is curly and not very long and the texture is coarse but sometimes soft which is just SO WEIRD! It feels alien also. Nothing like me real hair.

    I did get a stupid port. I think it's what caused my first round infection and 4 day hospital stay. Grrr...

    So people don't "know" I have cancer when I'm out and about but tey do think "wow, that chick looks like shit!!" Because when you count in the unexpected 22 pound steroid gain I'm just a wreck! 😜😜😜😜

  • phaila
    phaila Member Posts: 177
    edited May 2016

    let's all post some pics of how's it's looking right now

  • Trixie16
    Trixie16 Member Posts: 20
    edited May 2016

    Viktoryak- My chemo cocktail was four rounds of dose dense AC and now I'm doing 12 rounds of Taxol...7 left to go every Tuesday.

    Phaila- Thank you for making me laugh this morning. I really needed that!! :) Our hair stories sounds exactly the same. I too, have just a thin veil of hair on the crown and sides of my head. Seems like I have a tad more in the back My hair is typically long and straight and right now it feels nothing like my own. I especially appreciated your comment... people don't "know" I have cancer when I'm out and about but they do think "wow, that chick looks like shit!!" My hair looks like crap!! I asked my boyfriend the other day..." would you have preferred I was bald, or have this crappy looking head of hair for the next several months?" He said he thought it best not to answer the question...LOL

    Loopy

  • jgab
    jgab Member Posts: 24
    edited May 2016

    I am also shedding like crazy. The sides above my ears are very light. I feel like I have hairs on my arms all the time. I am three days post second treatment. Does the shedding slow down or is it just continual throughout the whole process? I am trying to stay positive, but it's hard when hair keeps falling out. I found the wash days were the worst:(

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