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Cold Caps Users Past and Present, to Save Hair

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Comments

  • char1110
    char1110 Member Posts: 13
    edited February 2016

    33 Triple I would check with Geralyn, but if it were me I would bring a mini cooler with some dry ice. I would try to find out why the temps were so off. Maybe she will recommend that you you use your own cooler. It's a pain, but if that is the only way to get the correct temp you might have too. Hugs!!!

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2016

    33triple, I think you will have better temps if you get the caps in the freezer two days before chemo. I had a freezer, and two sets of caps were in it all the time. I had some temp problems when someone had used the caps the day before me. I believe the rule now at my infusion center is to not allow cap usage two days in a row, because of temp issues. (Angiel is that right?). That being said, I don't think a small variation in cap temperature will cause problems for you

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2016

    Brandysands, if you are doing the weekly taxol first, you will be absolutely fine during that 12 weeks. The caps work extremely well on that regimen. I had herceptin but not perjeta. Not sure if perjeta has any hair loss effects. Once you move on to AC, the results are more questionable. Probably a 50-50 chance of pretty significant hair loss, judging by others' results posted here. When I started my 12 weeks of taxol/herceptin I figured I had 12 times for mistakes that would cause me to lose my hair. But it didn't happen - capping became very routine and my helpers did great

  • lovingwhoyou
    lovingwhoyou Member Posts: 1
    edited February 2016

    Hoping to find safe hair and skin products for my sister who is starting chemo next week. She is doing the cold cap therapy and they suggested mild shampoo and creme rinse not conditioner. Has anyone had any luck with certain products that you can recommend while using this cold cap therapy. We know it can't have parabens and sulfites. Also, can you wear a cap or wig over the hair while undergoing this therapy? Any info would be so gratefully appreciated.





  • moderators
    moderators Posts: 8,746
    edited February 2016

    Dear lovingwhoyou, Welcome to the boards. We are sorry for your sister's diagnosis but glad that you reached out here. While you are waiting for some responses you may want to check out this Podcast on Cold Caps. We hope you find some information and support here. Stay connected. The MOds

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited February 2016

    lovingwhoyou, I have used Beauty Counter products because they are sulfate and paraben free. In addition, their other products do not contain the 1,500 chemicals banned in the EU that are allowed here. The shampoo and conditioner are very gentle. My mom's cancer center recommended Nioxin. I switched to that after round two of my TC chemo.

    The owner of Chemo Cold Caps told me not to wear a cap or anything on my head that would heat up the hair follicles. She shouldn't use any heat on her hair. I've done very well with my hair. One balding spot on the crown, which I cover with Toppik. Good luck

  • 33triple
    33triple Member Posts: 48
    edited February 2016

    Thanks ladies! For some reason the will only let me bring my caps in 24 hours prior which is ridiculous so i think I'm gonna bring the small cooler with dry ice for back up. Fingers crossed! 

  • pch
    pch Member Posts: 185
    edited February 2016

    Windward, there is also a little pump that comes with a starter Toppik kit that you can use.

    On the very off chance you're anywhere near Madison, WI, my stylist has been so, so fantastic with my trims. If you're not, comb your own hair out very gently when you get there, let your stylist know what's up, and have him/her do a very gentle dry trim. No pulling necessary. Mine has been a godsend. But I do my own combing even now, all this time later (10 months PFC?). (I have a ton of "undergrowth" so my only real style is straight, no layers, so the dry cut works.)

    Anyway, good luck!

    pch

  • pch
    pch Member Posts: 185
    edited February 2016

    starsaresta…, I can weigh in, re: surgery. I had two surgeries--one @ 3 months PFC and one at 7 months PFC. And then I had my exchange a couple of days ago. Between the stress and the shock to your system (it's a real thing that happens with surgery, yes), you'll probably notice a little more shedding--not like with capping, but some. The good news is that I've been through it twice now and while the extra shedding is distressing, I still have more than enough hair to look ok. Also, your hair begins to grow even through the surgeries and that helps a lot. The very thin spots will thicken up. You may get thinning elsewhere, but It balances out. I was bummed to start losing hair again with the surgeries too. But (again) you have a lot more hair than you ever imagined. I was just thinking today (three days after surgery #3), that I kind of almost look like myself again. I'm sure I'll probably go through another quick shed. But try not to stress about it. It'll be ok. Hang in there.

    Ok, and here's proof of hair. Taken today. Happy Valentines Day. xopch

    image

  • milkchess
    milkchess Member Posts: 14
    edited February 2016

    Hi All- just wanted to share my PCC experience. So I finished capping and am 4 weeks PCT and... Barely have any hair left. I was on TC x4 and I guess it just didn't work for me. I have two huge fist sized bald spots on the top left and right of my head so I always have to wear a wig or beanie. I have maybe 10% of my hair left. Better than nothing I guess, but I'm hoping even with 10%, growing it back with some hair versus non will be easier mentally.

    One piece of advice I would have using the dry ice is to get more than they recommend. And also to freeze an hour earlier than they say as well. After the first time and not having super accurate temps, we froze earlier and had more ice and were able to get colder temps later (I was -34).

  • zinny
    zinny Member Posts: 169
    edited February 2016

    Hi Milkchess…so sorry to hear that after all that hard work and suffering you didn't have luck. Agree with the advice - need to have the caps on the ice 3.5 to 4 hours before you need to start capping ( which is 50 minutes or so before your "appointment.")

    I hope I have more luck, though AC is tough and I am shedding lots.

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited February 2016

    pch - still looking beautiful as ever :) What a PCC success story xoxo


  • starsarestars
    starsarestars Member Posts: 30
    edited February 2016

    Thanks PCH and Wildflower for the reassurance. I just hadn't heard anyone talk about more shedding right after surgery. I totally believe it stressed out my hair. I have noticed small little hairs starting to grow on my head, so I know it will all come back eventually. Luckily I started with lots of hair. Beautiful pic PCH too! I'm staying positive and thankful to be on uphill side of this journey.


  • heatherbless
    heatherbless Member Posts: 55
    edited February 2016

    I have used ELASTO-GEL CAPS AND DRY ICE and it has gone wonderfully well for me!! I am at my 5th CHEMO and have had minimal shedding. I could not be happier with my experience! I wish you all the very best! heather :)

  • Cesca2T1
    Cesca2T1 Member Posts: 2
    edited February 2016

    There's so much information here that I want to stay up. I started PCC February 3rd. Rapunzel was willing to donate a freezer. I gave my hospital Kaiser Permanente all the information and they promised they would have it there by the date of my first infusion, make arrangements to borrow fro another facility, or send me to a different hospital until they received it. It has not happened and I have written, spoken and met with the personnel in charge of approving it with no results. So for my first session, we had a professional capper. The second session, my husband and mother did all the work. Cold didn't seem to bother me so much. I felt very cold for about five minutes only. I didn't get a headache. The capper had my hair parted in the middle which I never do and said I should always wear it parted in the middle and to cover the center with a folded strip of gauze or net. I have had two session and right in the middle it burns a little and there is one spot that hurts. Should I cover it with another layer? Is that frostbite? It is not peeling or blistering. The thermometer was acting up and taking accurate temp. of everything and the caps were stuck at -38 C for a while and the had to be kneaded because they were stiff. My hair is long and curly and I was asked to just braid the ends and not close to my scalp. I have been having trouble with hair getting tangled up at cap change. The hair in the front is long and it gets in my eyes and in the frame of my glasses. Would it be a good idea to make three little braids with all the hair from my bangs, just braid the ends? I have been taking the Silica, but it does not agree too well with me. Going for my 3rd of 12 Wednesday. What products are you all using? I am using products that are sulfate/paraben free as I always do and satin sheets or pillow cases. How are you keeping the hair off your face? The best to you all!

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2016

    Cesca, I'm sorry you're having to deal with dry ice when you thought you would have a freezer. I had access to a freezer and it does make things a lot simpler! I'm not sure why your professional capper said to leave your hair parted in the middle. My local Penguin rep/capper/expert told me to change my part with every cap change, so as not to cause frostbite in the part area - made sense to me. I did have a tender scalp - I think that's very common. You probably don't have frostbite as I think that would cause scabbing. Since your bangs are long, I would include them with the rest of the hair - pull them back or to the side when changing your part. Otherwise the area where your bangs come forward from the rest of your hair may get too cold, since that's a bit of bare scalp just like a part. For your issue with hair getting tangled up at cap change, some people who had that problem solved it by fastening the velcro loosely and making sort of a helmet of the cap before placing it on the head. Then tighten the velcro completely. Sounds like you may be doing 12 weekly taxol - the caps work great with that regimen so don't worry too much about cap temps.

  • Cesca2T1
    Cesca2T1 Member Posts: 2
    edited February 2016

    Thank you so much PatinMN, I will take all that information into consideration! We will keep on working on it and let you all know. The nurses have been very good about giving me the needed time. Like they all say here next session will be easier.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited February 2016

    hey ladies, I've been off the grid awhile because I was tired of having to reset my password every time I logged in!

    I am on infusion #13 this week with only 3 more to go and still have a full head of hair. I shed 1 Baggie on the AC. I shed 1 Baggie on the Taxol. I actually shed more the first weeks of Taxol then all the Ac. They said it was from the AC still being in me. I was scared for a few weeks but then it just stopped. I don't even shed now.

    I'm getting anxious to cut if off now..:how long did everyone wait. The ends are pretty dead and it definitely needs to be done!

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited February 2016

    Hey, LRFTexan,

    Good to hear from you again and yay that you're almost done with the Taxol and also have no more shedding! woohoo!

    I had 4 rounds of TC and got my first trim at 3 weeks pfc. In my opinion, you could do this now if you're not shedding anymore. The first time, I had the stylist do a dry cut which was gentler than wetting/combing/cutting. Since then I have had two more trims (wet cut just like normal) and my hair is growing out so fast! I am back to doing everything I used to do with my hair (cutting, highlighting, daily blow drying, warm water washing, the works) and it's so awesome to finally be on the other side of the hair care thing! I am so happy I chose to cap. It made this whole crappy bc experience so much more bearable.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited February 2016

    thanks for confirming what I was already thinking. I've had growth for weeks too. I had one spot that was frost bitten so we have watched the growth there. How long did you wait to color?

    I think it's like the timing of the caps, we cut my down on Taxol. We know 4 hours works but was it necessary. No.

    We know not cutting works but is it necessary.

    Happy Wednrsday!!!

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited February 2016

    LRFTexan,

    My hair is baby fine and thus more fragile, so my stylist did a few test highlights at 17 weeks pfc and we waited a week to see what happened. Everything went ok, so at 18 weeks pfc we did a complete set of blonde highlights using foils and a peroxide based product by Davines from Italy. The color took well with no weird undertones, and there was no damage or shedding, even though the process uses heat to develop the color. It felt so good to finally get rid of those 4" dark blonde roots! Since then, I've had one more highlighting session and another trim, and my hair is looking better and healthier all the time :-)

  • LRFTexan
    LRFTexan Member Posts: 57
    edited February 2016

    I have the same very fine baby hair! I am convinced it is why the cold caps work so well for us because our heads freeze faster!

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited February 2016

    Maybe so...they sure seemed to get colder each time! Brain freeeeeeeze!!!

  • Angiel
    Angiel Member Posts: 175
    edited February 2016

    Just checking in....have been off the boards in a while...can't believe it's been 1 year since I began chemo....anyway...

    Yes, 33Triple, PatinMN was correct in saying that with freezer use, caps should have a full 48 hours in the freezer prior to use. Because of this, caps at our center could only be used every other day. If you wanted to use them on back-to-back days, you needed to supply dry ice as that brings the temps down faster.

    pch - you look great!! So glad to hear your surgeries are all done!!

    Someone posted earlier about doing chemo for 5 months and if the caps would work. Well, that's what my regimen was - 16 treatments over 5 months (AC plus Taxol) and I am so happy to say I was a success! I figure I lost about 35-40% of my hair but no one really could tell but me.

  • estelalorca
    estelalorca Member Posts: 26
    edited February 2016

    Hi ladies,

    The shedding is starting to drive me crazy, and don't get me started on when I have to wash my hair! I get so scared that there won't be any hair left when I get out of the shower. I'm currently sitting on the fence trying to decide if I should continue cold capping or throw in the towel. I'm due for a hair wash on Saturday and I figure I'll give myself till then to decide. I'm expected to do round 3 next Tuesday if my blood work comes back satisfactory. Does the shedding ever slow down?

    I know there is suppose to be some shedding, and reading from people's experience it seems normal. My hair is fine, and it appears that most of the shedding is coming from the top of my head.

    Sorry, I just had to vent and work out my thoughts...I don't know what to do.

  • zinny
    zinny Member Posts: 169
    edited February 2016

    estella - I am shedding like crazy too. I try to gather what I can especially after a shower and put it in a little bag. Silly, but you can see how much it really is and it is not as much as you think. I wouldn't give up yet!

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

    Estella and Zinny I know how you both are feeling. I was a stressed out mess the whole time I capped wondering if  I would have any hair left but I did now it wasn't and 7mths PFC still isn't the hair I had it is thinner but I never needed a wig and I have all new re growth everywhere so try to keep at it if you can.

    Just a question to those who are PFC I'm finding in the last few weeks that my leg and pubic hair growth has seem to slow down I'm 7 months PFC was wondering if anyone else had this happen to them? It seems to be growing at a rate that is slower than before chemo even. I know I should be happy with this but wondering if that hair is slow growing will my head hair start to slow down to?

  • Mypinklife
    Mypinklife Member Posts: 18
    edited February 2016

    Hi ladies! I'm two weeks out from my first TCHP and have had no shedding yet but am loosing pubic hair, can I take that as a sign the cold caps may have worked?!?

  • mdg
    mdg Member Posts: 1,468
    edited February 2016

    I felt the same way 5 years ago when I was going through chemo. Remember the goal....to have a full head of hair so you don't need a wig. I thought I would shed until I was bald, but I didn't. Was my hair super thin at the end and after chemo? Yes. Was I freaked out? Yes. Was I worried it would all fall out? Yes. Did I have emotional breakdowns because of this? Yes. At the end of it all, I still had what looked like to others is a full head of hair that did not require a wig. Was it attractive hair or like my pre chemo hair? No - but I had a full head of hair. Hang on ladies.....we get it. We have all been there! Hugs!

  • estelalorca
    estelalorca Member Posts: 26
    edited February 2016

    MDG, Zinny, Aussie, Thanks for the encouragement and talking this out with me. I will push through this!!!

    Zinny, I wish I started a hair baggy.

    Mypinklife, wishing you success with cold capping!

    xoxo

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