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Cold Caps Users Past and Present, to Save Hair

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Comments

  • jc254
    jc254 Member Posts: 332
    edited April 2016

    7of9, were you able to get your caps cold enough in time for the next cap change when using only three?

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    thanks hikerchic! I'm getting more tired so at this point I hope I can finish!

    Wow so you're pregnant? That's exciting! I'm curious how chemo works with pregnancy.

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

    jc254...close as damn is to swearing though im addind a fourth ekastagel one onto the rotation and my husband wants some smaller bags of dry ice to go on the inside of the caps. He thought one was not cool enough so we swapped at twenty to twenty-five min max throughout then did 25 after,slowing to 30 min last two hours but we did do full four hours after tax done.. We had them in our freezer at 5 the night before then dry ice cube cylinders by 830 am. Pre capping starred about 130 pm. Solid 45 _ 50 min prior to startling the tax. My husband the engineer u0is still confident we can do 3 caps with 35 lbs instead of 25 dry ice in the cold cap cooler and hold at 10lbs in the smaller cooler for the mitts and feet covers. Zero neuropathy from just chilling feet and hands during tax only. I am doing all four rounds regardless to ensure I dont get permanent hair loss.

  • hikerchic
    hikerchic Member Posts: 25
    edited April 2016

    7 ~ my husband is an engineer, too....so I know exactly what you are going through! He has been working on the cold cap project for the last week....down to the detail.

    Runner ~ From what I have read and from what my MO and OB have told me, my AC+F is safe in the second trimester. We are doing Tuesday and Thursday every three weeks for six cycles...finishing a little over one month prior to delivery. It is a coordinated effort and naturally I still worry.

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Hi ladies,

    I am starting chemo on Monday. I am getting overwhelmed and have so many questions. I have my cold caps in the freezer. They seem so heavy! We are going to do a dry run tonight to make sure we can get them on and off timely.

    - I will be talking docetaxel 123 mg and cytoxan 984 mg. Do these drugs generally do okay with the cold caps?

    - I have to start the caps 50 minutes before treatment. I will be using dry ice. The center only has a regular freezer. Should I arrive early? They said that my blood work and pre meds will take approximately 30 minutes.

    - I changed my deodorant to no aluminum, bought the recommended kind of shampoo, I'm fine with only washing my hair 2-3 times a week and I can live without styling it (I work at home), but no caffeine? Really? Ugh! Did you really eliminate all caffeine? I love my tea in the morning.

    - I did get the extra caps for the hairline. Anyone uses these? tips?

    - I know I have to keep my head cool. Does that mean I can't stay outside in the sun?

    Sorry for all the questions! Thank you!

    Sheri

  • JCS28
    JCS28 Member Posts: 92
    edited April 2016

    Good luck, Sheri-CT!

    I can only answer some of your questions.

    I am on Taxotere which is docetaxel. But I am not on Cytoxan. My experience has been great.

    I think each center is different, but mine works like this. I arrive first for blood work and port access. Then I see my doctor. Then I go back to infusion and wait for a room. So, it's usually 1.5-2 hours form when I arrive to when I actually start the chemo. Once in the room I get a nurse and they get the premeds started. And yes, I get 30 minutes of premeds before starting the chemo. I start my cold caps at 40 minutes before, so we usually go ahead and get started with the first cap when I get my premeds. Mine are all pills. Then the nurses have been very kind and just say for me to let them know when we're ready for the chemo. That way we can time it. I've heard that some nurses can be annoyed by working around the cold capping, but so far, we have had an excellent experience every time.

    NO WAY did I give up caffeine. Haha! I'm drinking a fully leaded Coke as I type. I've had 5 of 6 treatments and have nearly all my hair. Absolutely no one can tell.

    Do you mean the extra bands for the hairline? Are you doing Penguin Cold Caps? I have the Penguin Cold Cap, then there is one cold band that goes around, and then there are two more elastic but not cold bands that tighten it all up. I think the recommendation depends on the thickness of your hair. My hair is medium to thick but not super thick and I do use them.

    I have been out in the sun. I think the keeping your head cool mostly means not sweating and not getting hot water on your head. I haven't worn any hats. I wash my hair in cold water in the sink. But I take a hot shower nearly every day and just don't get my hair wet.

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Thanks, JC528! Good to hear about your success and the caffeine! I don't drink a ton of it, but I really need that tea in the morning.

    I am using Penguin. I have a box with 4 gel bands, but no elastics? Maybe they forgot to send them. I just held one to my head and it feels so cold.......yikes! Hope I can do this!

    I did call my clinic and they seemed very open to me using the cold caps.

    Sheri

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited April 2016

    Sheri, I did cold-capping a year ago already and my chemo drugs were different from yours, but I will try to answer some of your questions.

    I was using Penguin Cold Caps and dry ice too. I used to see my doctor first and then I would be taken to the infusion room where they took my blood through my port. While I was waiting for the blood work to come back, we would set up all our tools ready for cold-capping. The nurses knew that I needed to have the caps on my head for 50 minutes prior to my Taxol and my premeds were all done via the port. If I recall correctly they took about 40 minutes, but my nurses worked with me to get the 50 minutes before the chemo drug was hooked up. The moment we would get the blood work results and I knew I was OK for chemo, we would start cold capping and I always had enough time to get the 50 minutes. 50 minutes is the minimum, if you get more time of cold capping before chemo, that's OK.

    I did have the extra cold bands, but I never used them. My hair is thin to medium and we deemed the extra bands to be overkill. We did use the two elastic bands to tighten the cap to the skull strongly - you definitely need to have the elastic bands.

    I did not give up my morning coffee. I drank it weaker than usual, I added more milk than normally.

    I avoided sun and not only because of cold caps. My understanding was that sun was to be avoided due to chemo too. Once I went to a driving range with my husband and I used an umbrella to shield myself from the sun, but generally I stayed inside. I washed my hair with cold-ish water.

    I felt very overwhelmed and scared for my first chemo/cold capping. I did 12 sessions altogether and by the third time we felt like we were pros, it was like a well-oiled machine. The results are well worth all the work and cold. I estimate I lost about 30% of my hair and I don't think anyone can tell I went through chemo.

    Good luck on Monday, you got this! Best wishes.

    BB



  • phaila
    phaila Member Posts: 177
    edited April 2016

    Let me give you a little bit of advice for before you start cold caps...brush your hair like crazy! Put it in pony tails and wrap it into a bun....drive down the road with windows down, let people touch it, especially if you have kids! Just let them run their fingers through it and pet your head:) Take the best warmest showers of your life with your favorite shampoo and conditioner. These are things you are going to long for while Cold capping! At least it's what I'm going through now:( I miss being rough with my hair. I miss just running a brush through it and getting knots out. I'm about to start on TC number 3 and I've lost about 60% of my hair:( But it ends up I had really thick hair (I never realized before) so it looks like I have thin hair. I realize that I lost so much because we didn't realize how thick my hair was and it ended up insulating my scalp from the chill. It got cold but never REALLY cold. The bands were a necessity to me because without them all the hair on my neck would not have been covered. Also it really helps to cool the temples which is where most lose hair. I'm actually ordering 4 more bands because the bands don't cool down enough for their second round . Also they are great if your head is on the big side. Small heads can totally get away without them. If you feel you don't need them after treatment one send them back. That's 40 bucks extra a month!

    Super good luck! Make sure the caps have very tightcontact with your scalp. That will almost ensure your hair being saved!!

    Vicki

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    im glad you stayed with it phaila! Ive been wondering about you! I agree about the pre-capping advice! I miss being rough with my hair too. But I've gotten used to it. I have 2 cycles of CT left, but now I trust the process and feel confident in how to do it. I got past that awful shed at 21 days. For about 4 days it looked like I was running a golden retriever rescue in my house. Hair was everywhere! But, my vacuum serviced and so did my hair. It's completely worth the effort!

  • phaila
    phaila Member Posts: 177
    edited April 2016

    hi runner, I'm actually getting worried. My day of shedding last treatment is coming up😬. When I bathed last night a lot more came out, more then usual. This week will be the big test:)

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Another question- I start chemo Monday. I was planning on getting my hair trimmed Friday. Good or bad idea? I have shoulder length hair and I was only going to get a 1/2 inch or so.

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

    Day 14 post first Taxotere (no Cytoxin) still have hair - no major shed (yet) worried - but you know what, (this is a damn recurrence for me) my first time around with ACT chemo- - I had shaved my head at around day 10 because it was starting to fall out...so I'm further along than that at least.

    I also only lightly brush or use pick on my hair once in the morning and if I need to after work (got a short mom-do back when re-diagnosed - so glad, it's easy and actually have gotten used to it and have received compliments) but my new trick is I do it when I take my glasses off and BEFORE I put my contacts in. I try not to look at the brush nor do I comb/brush over the sink or counter. Any hair that was too wimpy for chemo despite cold cap and bails on me can fall to the carpet and I'll suck it up later anyhow. I'm do for a wash/rinse tonight or tomorrow so I know that is going to be scary. I have also switched to wearing mostly black, gray or dark blue shirts / sweaters at work. I don't want to see a bunch of hair and be reminded throughout the day.

    Keep on keeping on ladies!

  • estelalorca
    estelalorca Member Posts: 26
    edited April 2016

    Sher-CT - It might be a nice little treat for you to go get your haircut and blown out. Just a trim, then get it styled....and enjoy every second of it. Especially, the massage at the sink....sigh.... I miss that. Good luck with everything, and I wish you success with cold capping!!!



  • JCS28
    JCS28 Member Posts: 92
    edited April 2016

    Sheri-CT -- Yes, I did just that. I had a fresh cut and style less than a week before my first chemo. It was great because then my style lasted a long time and I didn't worry as much about a bad hair day for a while. And I've just figured out that my hair isn't really growing (obviously!), so the shape of the cut has lasted longer than usual. It's been just over 3 months and it doesn't look as bad as it should.

  • phaila
    phaila Member Posts: 177
    edited April 2016

    7of9 it's not scary until the shedding starts. You've got a few days so enjoy your shower:)

  • Runner70
    Runner70 Member Posts: 177
    edited April 2016

    phaila, my hope is that with less hair going into treatment 2, you will have more success because your scalp got colder. It's got to be so traumatic for you having to see all this hair come out everyday. I'm at day 20 after my 2nd chemo. My hair loss has been normal, but I didn't start my epic hair loss that lasted 4 days until about day 23 after the first treatment. I'm hoping to not repeat that. I've decided to just trust the process and if I lose all my hair, so be it. Maybe not worrying about it has helped. You haven't posted a pic in awhile. We are our own worst critics.

  • phaila
    phaila Member Posts: 177
    edited April 2016

    hi runner, well super super good luck to you!! Do you have any pics? I'll hold my breath as you enter into day 23!!!! I am very hopeful your "shedding" is over❤️

    Thing is my hair looks like there's lots but honestly it is so thin it's just surreal -BUT less surreal then being bald right :p

    I'll take a pic after top gear is over;)

    Vicki

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Thank you for the responses and advice. I am feeling a little less stressed about Monday. I do have another questions. I did get the extra cold bands. My head is not large, but I feel like my hairline is not fully covered by the cap. I am confused how to use the extra cold bands? Do they go under or over the edge of the cap? I did not receive the elastic bands, but they are mailing them to me.

  • ILoveArt
    ILoveArt Member Posts: 25
    edited April 2016

    I found this You tube video helpful. I have been having my cold cap helpers watch it.

    You've go this!

    ILoveArt


  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    ILoveArt- thank you! That's a great video!

  • phaila
    phaila Member Posts: 177
    edited April 2016

    imageok here are a couple of pics. Thing is it looks like way more hair then it is. The hair is sort of like a dusting that's hanging all wavy with no mass to it. If I shed again the dusting will be gone. My hair is usually straight, blond, and like 7 inches longer (I freaked out one night and cut off 7 inches before first chemo:p) So I guess my hair must have been REALLY thick before this if you can imagine that 60% is gone

    imagePlease ignore rosacea/period face and ripped wallpaper waiting to be repapered:)

  • jgab
    jgab Member Posts: 24
    edited April 2016

    Ok...Phalia....you have been scaring me! I have been following your posts because my regimen is pretty close. I am on carbo instead of cytoxan. Your hair looks amazing! Even if you feel like it is so much less, it is still there and if I saw you at the grocery store I wouldn't think anything was going on!!! Thank you for posting pictures because I am seriously impressed!

    Next monday is day 14 for me. I am trying not to think about it since I don't need another thing to worry about!!!!

    I think it looks great....how many treatments have you had?

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    Phalia- I think your hair looks great! I will be taking the same meds as you starting Monday.

  • phaila
    phaila Member Posts: 177
    edited April 2016

    I knew you'd say that! It really truly isn't as much as it looks I promise!

    well 2 treatments so far but technically only 1 has kicked in. I'm on day 15 of round 2 and my hair loss started around day 17-20 of treatment 1, so I'm getting all freaked out. Plus my hair is just crap quality now. It's like wirey and kinky. I'm bitching but seriously happy to not be bald. My hubby said it seems as though all your soft normal hair fell out and all the grayish tough hair stayed around. He's getting a little worried with the shedding day coming up since he's the capper in charge:p

    So remember new capers- the first time is THE MOST IMPORTANT TIME! Super good contact and tightness and keep those caps cold! We went colder then our routine 2 round seeing as how much hair I lost the first time. If we had known how imperative those 2 things were in the beginning I know all my hair would have been saved! For real

    I guess I'll see if that all work in the next few days. Crossing fingers!

    Also dont forget to ice fingers and feet. Not sure if it's because of icing but I've had no nail peeling or numbness and tingling. Taking care of cold caps and icing hands andfeet keeps your mind off of everything else. My first time I was crying and they didn't know if I should do it. It ended up being a breeze and so was the next one!!

    Also suck on ice CONTINUOUSLY and you wont have mouth sores. I also haven't had taste changes or metal taste:

    Good luck to you all!!! Hope to hear your stories of success ❤️


  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    phaila- I was just going to ask about hand and feet. What did you use ice them and for how long?

  • phaila
    phaila Member Posts: 177
    edited April 2016

    Sheri,

    Ok it's a ridiculous looking set up but if it's why I don't have numbness I'll willing to look like a dork!! You need 2 bags of peas per foot and one per hand. Put socks on and have them duck taped to feet. One on bottom and one laying over toes. Then wear gloves and just plunge hands into the bag. The hands get REALLY cold and you'll have to pull them out every now and then but as long as they're cold it should be ok! Find out if your center has ice for sucking. Ours ended up not having ice and we ran out towards the end and I made hubby grab an ice cream from cafe. If you bring a big Baggie of ice,keep it in and out of cooler. Dry ice makes ice TOO cold. It makes peas too cold Too so onlY Put them in cooler as You're leaving for treatment

  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    Hi Ladies, I am new here. I will be starting my chemo probably in a week Taxol regiment 12 times once every week. I am thinking about capping. I was told it works with this chemo drag. I just not so sure if it matters what caping company to choose are they all the same? From my phone conversations and reviews I liked Arctic caps. They friendlier and offer sky training plus cheaper a bit.

    What worries me is that I have a lot of grey hair, always had colored hair and plus every day i had to wash them to style using products. They short kind of Lisa Rinna style.

    So, if i don't use any products for 6 month and no coloring..it will be a mess. How do i manage it.?..:( I read somewhere i can use maybe some natural color? Anyone knows anything about it? Also i am planning to buy a wig just in case i need to go to some event and my hair a mess. I was told i can only wear a wig for very very short time...Maybe i can use some fancy scarfs (like gypsy scarfs) just to kind of keep them in shape?.. I know it is sounds maybe crazy to be concerned about all these.. but it is important for me to look good not sick during chemo.Any hints and recommendations appreciated!

  • Sheri-CT
    Sheri-CT Member Posts: 40
    edited April 2016

    phaila- I'm trying to imagine me sitting there with peas on my feet and hands......LOL! Are others at your center also doing that? Do you remove them to go to the bathroom? My clinic is going to love me.....ha ha!

  • phaila
    phaila Member Posts: 177
    edited April 2016

    Somehow they said they've never heard of either! They were excited about the cold capping though. They politely looked at me out of the corner of their eyes but never asked or said a word about anything. But this is a tiny center and not sure they'd be excited about the extra room being taken up with coolers but whatever! We can always choose to go to an accommodating center in Baltimore that actually have freezers and offer the ice gloves and booties. I'm sure losing money will talk lots;p

    I only had to go potty 1 time and we did it between medicine changes and took peas off and retaped them after. Once you're there you really don't give a rats ass how you look to anyone else. Plus NOTHING looks more ridiculous then the cold caps. I keep saying everyone just thinks I had a lobotomy or something as we walk through the medical center afterwards. At least the peas aren't on my feet or hands at thatpoint😜


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