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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Mecool
    Mecool Member Posts: 5
    edited March 2016

    Thanks ladies. I just ordered an infrared thermometer and my mom has agreed to come with me to every one. At least until we determine if it's working ;) As for the number, I'm going to stick with the 4 after looking at the timing of my infusions. If I can get 45 minutes out of one which is what my neighnor gets out of his elastogel mitts & boots) then #1 will get me the 30 minutes before and my 15 minute adriamyacin push. Then #2 will get me through most or all of my 30-60 minutes cytoxan drip. If I had to go to #3 during that I will leave it on until it reaches temp change and then use #4 until it's above temp which should be 30-45 after infusion. Worth a shot I suppose.

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2016

    Mecool, I'm sorry to say that your plan seems like a recipe for failure. Especially with adriamycin, maybe 50% of cappers using the strict Penguin capping guidelines lose so much hair on the AC regimen that they quit trying. It's just a tough chemo for cold capping. If you try to extend your caps for 45 minutes they will be way too warm to protect your follicles. And ending your capping so quickly after chemo is also a problem. If you want to save your hair you need to make the full commitment

  • zinny
    zinny Member Posts: 169
    edited March 2016

    We got a laser thermometer from Amazon, cost about 30 dollars, does the job pretty well. Our caps on dry ice last about 30 minutes and start to warm. I can't imagine trying to do it myself - my husband is in charge of the head stuff. You want the fit to be snug so your head is cold enough.


  • Mecool
    Mecool Member Posts: 5
    edited March 2016

    I don't know, those "guidelines" seem pretty specific to the Penguin brand. The others I've looked at don't have that strict of instructions yet the success rates seem to be similar. Like I said, I was already preparing for it to fall out, so if I can try it this way and it works it will be a pleasant bonus. I'm willing to give it a shot for the $350, not really willing to risk any more than that.

  • jc254
    jc254 Member Posts: 332
    edited March 2016

    Mecool, you've been given some good advice here. Generally, the success rate is higher for Penguin caps than ElastoGels, but women who use ElastoGel and follow the Penguin protocol seem to do pretty well. The protocol is strict for a reason- it gives you the best chance of keeping your hair. With either brand, 45 minutes is way too long to wait for a cap change and 4 caps won't be enough. It flat out won't work.

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

    mecool, did you say you were in Texas? There is a cold cap foundation in Texas that helps women get caps/provides financial assistance if you qualify. Please read about it and check the FAQ thread for additional information. It would be great if you could get more caps through them to increase your chances of success. I understand the financial limitations...this isn't cheap!

    http://ccaps.org


  • Mecool
    Mecool Member Posts: 5
    edited March 2016

    Thanks, ladies. I really do appreciate all of the feedback. I'm going to return the cold caps. I just went and tried on an amazing wig that is the same price so that just makes more sense and is way less work! Good luck to everyone!

  • Kdending
    Kdending Member Posts: 2
    edited March 2016

    Hi All-

    Just wanted to share (what I hope..not done yet!) is another A/C + Taxol success story. I went through four rounds of A/C and I'm currently 10 rounds down, 2 to go of weekly taxol (tomorrow I will be 11 down!). Hopefully not jinxing myself by posting before I'm done!

    I'm SO thankful for Penguin Cold Caps- they have kept me feeling "normal" in such a non-normal time in my life. I would say I have lost about 30% of my hair thus far, mainly in shedding little balls of hair (as seen by the picture). I first started truly shedding about a few weeks into my taxol treatments I thought I was going crazy- Geralyn assured me that during weekly taxol it does slow down at some point and I was VERY thankful that around treatment 8-9 this proved to be true.

    I have followed to a "T" exactly what PCC told me us to do from day 1- we did not have use of a freezer in the facilities so we used slabs of ice from Harris Teeter in the coolers they recommended. I would say that keeping them on for the correct amount of time and being conscientious of "needing" the caps every ten minutes really helped in my success rate (VERY minimal shedding on the top of my head because of this). Having that awful, greasy period of adjusting your hair to a once a week wash also proved to be very helpful (the dreaded weekly wash/light brushing of my hair nearly put my in a coma).

    Please feel free to ask any questions and if you live in the DC metro area I would be happy to help at any infusions with cold capping!

    image

    Right after surgery, before chemo (note horrible looking bra!)

    image

    A bald spot from a bad bed sore from nurses not moving my head during 6 hour surgery- this was before chemo

    image

    That same spot, two weeks ago (hair starting to grow in already)

    image

    What the little balls of hair look like during my weeks of biggest shed (this was an occurrence that happened multiple times a day for a few weeks around weeks 4-8 during weekly taxol)

    image

    Back of head two weeks ago (4 A/C Treatments and 8 weekly taxol treatments)

    image

    Hair this past weekend (4 A/C Treatments and 10 weekly taxol treatments)

    image

    Happy cold capping! You can do this!

  • JCS28
    JCS28 Member Posts: 92
    edited March 2016

    Hi Cold Cappers! I just wanted to ask what brand of shampoo everyone is using. Someone had suggested Yes to Carrots to me, so that's what I've used since I started capping. I have completed 4 of 6 of my THP protocol. And I still have pretty much all my hair! But I just realized that Yes to Carrots has sulfate in it! What the heck! I know we should use shampoo that is sulfate free, paraben free, and alcohol free. So, what are you using? I am sort of tempted to just stick with it since I haven't had any problems. But if someone has something they love, I'd love to hear it.

    Also, how about dry shampoo? I've used Bumble and Bumble Pret a Powder. It is free of sulfate, paraben, and alcohol. It's alright, but it's not just amazing. Any dry shampoo you love?

    Thanks!

  • phaila
    phaila Member Posts: 177
    edited March 2016

    imageKending-your hair is gorgeous! That stinks about the bed sores:(

    How did the mitts work? I was going to get them but couldn't afford 3 sets:( is that how many you used? I live in Baltimore area:)

    Also curious about shampoos. Got these yesterday but just had no des what to get.image


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

    kdending - you look amazing! I hope when you are completely finished and the shedding has stopped that you will post your success story on the success thread!

  • JCS28
    JCS28 Member Posts: 92
    edited March 2016

    Thanks, phaila! But it does have alcohol. What do y'all think about that?

  • phaila
    phaila Member Posts: 177
    edited March 2016

    I didn't know if I got the right stuff or not:(

    Here were so many choices I tried to grab the best one. Figures it's the wrong one

  • imacaligal
    imacaligal Member Posts: 1
    edited March 2016

    My PCC rep recommended DermOrganics shampoo/conditioner and I ordered it from Amazon. It lathers nicely without too much effort and gets the hair clean. Generally speaking, I didn't put any product in my hair because it seems to make it dirtier.

  • Ruddycat
    Ruddycat Member Posts: 13
    edited March 2016

    I've been using Aveda Scalp Balancing shampoo & conditioner. Or sometimes Nuance by Salma Hayek hydrating mask - her line is at CVS & is really nice - mostly plant based.

    Just had my 3rd of 6 TCHP treatments today & I'm actually starting to believe this is going to work for me! The area above my ears is really thin - I think because my ears keep the cap from fitting tightly there - but my longer hair above hides it so you'd never know. Today, I tried to periodically just press & hold the cap up against my scalp in that area to see if I can keep from losing anymore.

    Here are some pics:

    image

    At 1st chemo during Taxotere - icing hands & feet

    image

    At an event last weekend.

    image

    After washing this past Saturday - Day 40

    image

    This morning before chemo #3.

    And believe it or not, I actually had a man in Target compliment me on my hair this weekend - that has to be the ultimate for a cold-capping chemo patient! He even turned to his wife & said "doesn't she have nice hair?"

    Of course, these are all pics just after I've washed & styled it - it looks AWFUL after a week of not washing and rolling around in the bed for days. But I'm really happy with the Penguin Cold Caps so far - especially in light of how pissy & uninterested the staff at my infusion center acts toward us!

    Wishing all of us the best of luck!!

    Leigh Ann

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2016

    Looking great, Ruddycat! What a great smile.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Kdending- You are an inspiration! Beautiful!!

    I also use Nature's Gate, but the Clarifying type. I don't see alcohol on that one. Have had success so far

  • zinny
    zinny Member Posts: 169
    edited March 2016

    Ruddy cat - you do have fantastic hair! Mine has looked dreadful as I have been afraid to style it because even a wide toothed comb leads to more shedding. JellyLoopy

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Ruddycat- gorgeous hair! And day 40! Wow! Congratulations!! When you say "styled", what do you use to style it? I have been so fearful to curl or do anything with it.

  • JCS28
    JCS28 Member Posts: 92
    edited March 2016

    Ok, I bought some new shampoo and tried it last night. And I think it's good! And my hair feels soft today. It's this one. And I got it at the grocery store!

    https://ogxbeauty.com/hair/argan-oil-of-morocco/


  • Ruddycat
    Ruddycat Member Posts: 13
    edited March 2016

    Thanks everyone!

    Nolagirl112 & Zinny - I know you're not really supposed to style your hair but after my first attempt at letting it airdry - I knew I'd have to take a chance at doing something more! And I know other cold cappers have been wearing hats and ponytails - which you're also not supposed to do and without any apparent problems - so I thought as long as I kept heat and products away from my scalp - I'd be ok. So here's what I do:

    I wash my hair in the shower, leaning back as far as I can and using the handheld spray, with barely lukewarm water and then rinse with cold water. I press as much water out with a towel as I can and then comb with my wide tooth comb. I add volumizing mousse to the ends and then lightly smooth dry hair oil over the top surface. Then, I dry my hair upside down on Cool and Low until my hair's about halfway dry (I had to buy a new hairdryer at Target that had an actual "cool" setting) and I use the COLD button when I'm anywhere near my scalp.

    Then, I flip my head back over and then gently finish drying sections of hair at a time using the wide-toothed comb and a wide bristle vent brush to just barely curve my hair up or under the way I want it to go. When I'm finished, I use a flat iron on one of the coolest settings in just a couple of places - it seems to work well and since my hair's slick and straight - it doesn't seem to put any pressure on my roots at all. Then I spray it with shine spray and that's about it! The whole process takes forever because of the cool hair dryer and how gently I proceed but it's worth it and I only have to do it once a week!

    I've been washing my hair on Friday or Saturday before my treatments on Monday and then not again until the next Sunday or Monday - yes - yuk - 9 or 10 days - but those last few days (Thursday thru Sunday) I'm pretty much in bed anyway so I don't really worry about it.

    I'm not sure how much of this is against protocol but I know Penguin says women with long hair can use hot rollers and curling irons on the ends of their hair so I figured as long as I kept everything away from my scalp I'd be safe. So far, so good - I think! I still freak out every time I wash my hair but I'm pretty sure that when I washed it this past Saturday that the fur ball in the drain wasn't quite as big as it'd been the previous week so maybe my shedding is slowing down - figures crossed!

    Take care and let me know if you have any questions!

    Leigh Ann



  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    thanks so much Ruddycat! I have an event coming up in mid April and didn't know what to do about the styling situation. I have been washing twice a week. If I don't, I end up scratching my scalp like I have fleas! And I think that is doing more damage to the roots then the extra wash.

    #5 Taxol on Thursday...so far so good(knock on wood

  • Scarlett152
    Scarlett152 Member Posts: 43
    edited March 2016

    I used big Velcro rollers in my hair after it was halfway dry and it really helped with styling. They don't pull and it did not cause any additional hair loss. Good luck

  • ILoveArt
    ILoveArt Member Posts: 25
    edited March 2016

    Everyone,

    I am truly so thankful for all of your postings and photos. I have learned something from each and every one of you. THANK YOU. I have only just begun, and it seems daunting, but you are all giving me the inner strength to do this! I am one A/C down. I'm finding myself feeling the best and most happy outside and intend to walk my way everyday back to health. Happy Spring!

    ILoveArt

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Thanks Scarlett, I have some Velcro rollers that I was thinking about trying.

    ILOVEART- glad you are here and that we have been supportive of you! You can do this

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

    Well yesterday was my 1 year anniversary of being diagnosed and by coincidence I happen to have my 1year follow up mammagram all seems fine have appointment with my Dr for results today then hopefully I can relax a little bit. To all of those who are cold capping at the moment stay strong and good luck to you

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Thanks Aussie- and Congratulations to you!🎉

  • Runner70
    Runner70 Member Posts: 177
    edited March 2016

    I'm brand new here and I have a question for you guys that have started the process. I'm doing 4 rounds of taxotere/cytoxan and I started March 10. I'm doing the cold caps and being very careful with my hair and all the rules. I'm hoping for a really good result but yesterday and today just the top of my head started feeling sore/sunburned. Everything I've read said this means I'm about to lose my hair. I know I'm going to lose some, but did you guys get a sore head and it stillturned out ok? I'm at day 13 and it sounds like people who don't cold cap start losing hair about now, but then I've also heard it's day 21. I'm picturing myself going totally bald on top with long fringe around the sides. Not really the look I'm going for. I just really want this to work. I'm not brave enough to go bald.

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2016

    Runner, I don't think it's uncommon to have a tender scalp on top. I did at times, and it didn't end in losing hair. Hope the same will be true for you

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Runner70- my scalp was tender above my ears, and I thought I would lose hair...but didn't! And tenderness went away in a few days. Hang in there!!

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