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Cold Caps Users Past and Present, to Save Hair

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Comments

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited November 2015

    Taxol ladies - if you don't hear anything, I know Suladog did TaxolX12 with great success. You can PM her in case she's not watching the thread right now.

    Jodi - take a look at the newbie thread again for companies I listed that I've heard about here. https://community.breastcancer.org/forum/6/topics/...

    Hopefully someone with personal experience with other companies will chime in.

  • jodes001
    jodes001 Member Posts: 53
    edited November 2015

    dancetracer...I just found that!!! So sorry, I should of checked that first! :P

  • pch
    pch Member Posts: 185
    edited November 2015

    I did dose dense taxol/carbo every three weeks (which I think is tougher on the hair), and I did fine with PCCs.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited November 2015

    No prob! This thread is the main resource, that's just a reference thread! I'll bump it for any other newbies.

  • jodes001
    jodes001 Member Posts: 53
    edited November 2015

    Hey I was wondering if anyone has used Arctic Cold Caps?? They are a bit less expensive, and supply you with much more...

    Nerdy

  • jc254
    jc254 Member Posts: 332
    edited November 2015

    Jodes, Penguin has their own brand of caps. The other companies all use ElastoGels. I think it's worth it to go with Penguin- especially since you're getting the grant money.

  • Angiel
    Angiel Member Posts: 175
    edited November 2015

    Hello Ladies....haven't been on the board in a while. This week marks 5 months PFC and I'm delighted to say that Penguin Cold Caps have saved my hair and I couldn't be happier! I'm back to washing in warm water, blow drying and using my flat iron! It sure has been a long 10 months!

    Anyway, I just wanted to chime in to those that are doing AC followed by 12 Taxols as that was my regimen over 5 months. Yes, the Taxol portion is definitely better on your hair and you may even experience new growth. I did. I did continue to have shedding, too, up until about 3 months PFC. I swear I felt like there was no way I was going to make it with any hair left but I did and you will too! I estimate that I lost about 35% of my hair which was really thick to begin. The shedding was very even and I don't think anyone would have noticed unless I told them.

    During Taxol I was washed my hair very gently twice a week....my infusions were mostly on Wednesdays so I would wash on Mondays and then again on either Friday or Saturday. I also exercised like normal during chemo - mainly running 4-6 miles a day- and I would always rinse my sweaty hair with cold water and use a conditioner following my workout to no ill effects.

    For more info, check out my past posts as I posted a lot during my journey in chemo. I know it's small, but my profile pic was taken after 4 AC's and 7 or 8 Taxols. Please PM me if I can be of any more help to any of you ladies!

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited November 2015

    Madisonmom and Andraxo I am so sorry that capping did not work for you I know I would be devastated if that had happen to me. I used Penguin Cold caps and even though I've kept my hair and my head is covered I has lost a lot if hair at the nape of the neck with post chemo shedding it is very thin now and while it was not the result I would've hoped for I'm grateful that I have hair and don't have to start from scratch. I'm sure people look at me and think "that poor bitch has really thin hair" which is better than them looking at me as a sick person. I'm wondering (if you both don't mind ) what type of diet do you have? I ask because I'm wondering if my results are due to that, I don't eat a lot of vegetables I love my meat and chicken and also chocolate and I have to have a can of Coke a day to. On another note I also recently went back to using regular deodorant as the aluminium free one was not cutting and its starting to get hot here in Australia I couldn't stand the smell of myself😂😂 also forgot to mention I'm taking a hair, skin and nail vitamin and biotin.

  • MadisonMom
    MadisonMom Member Posts: 22
    edited November 2015

    I eat a healthy though not extreme diet. Chicken, fish or vegetarian with lots of veggies. Used to eat a lot of fruit but it tastes bad to me now so I eat some dried fruit. Still drink 1 or 2 cups of coffee daily although it doesn't taste good anymore. Some herbal tea. A few cookies. I haven't heard anything about diet affecting cold cap results but who knows? I am on TC and have not yet lost body hair or eyebrows or lashes, just the hair on top of my head.

  • suladog
    suladog Member Posts: 837
    edited November 2015

    http://www.rapunzelproject.org hey there,

    Jodes,

    I did penguin cold caps with no problems. I was very satisfied with the capping experience. My husband did my capping. He works for food. Check out the Rapunzel Project as I think they do grants also. The link is up above for some reason!

    I was lucky enough to have the Writers Guild ( my insurance also my husbands insurance) paid a good chunk of the cost to my surprise! They are my primary, and my husbands primary (we're writing partners) and so we co- insure each other. Don't just think that your insurance company won't pay... Work on them.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited November 2015

    Suladog did you submit any special codes to insurance to help with the coverage or anything special?

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited November 2015

    Angiel and suladog - would you please be willing to share your story on the "Success Stories" thread I have put together for newbies? If you are willing to share photos of before/after, that would be fabulous, if not, even just sharing your summary of your story would be a wonderful thing for newbies! Thanks! Here is the thread:

    https://community.breastcancer.org/forum/6/topics/835766?page=1#idx_10

  • aj93
    aj93 Member Posts: 37
    edited November 2015

    Hi all, I got my cold caps covered by my insurance. I don't know if I can post these details on the forum. So unless I am told it's ok - for anyone interested, PM me.


  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited November 2015

    aj93 you could write the moderators and ask if it is ok. If it is, you can then post it. I could then add your details to the newbies thread, so that the information is not lost.

  • mdg
    mdg Member Posts: 1,468
    edited November 2015

    For those asking which caps to use.... Just remember you get what you pay for. Yes PCC's are more expensive but they also appear to have the greatest success rate. Some have had good success with Elastogels but not as many as with Penguin. You need to evaluate if the cost savings is worth the extra risk. Just my opinion.

  • jodes001
    jodes001 Member Posts: 53
    edited November 2015

    Thanks to all who replied about different Caps, I will stick with Penguin. Patsy from CCAPS ( where my grant is coming from) did say that I could choose which company to use, but she highly recommends Penguin. Now, I'm going to try and see what my Insurance has to say. I called them once and they wanted a "code" to look up coverage for me, which I don't have.

    BTW- Appt with MO tomorrow to discuss and schedule chemo (i havent told him I will go ahead with treatment) My daughter is getting married on Nov 21st, so I have put off starting treatment until this very happy event is over!! bittersweet...

    to be continued...

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited November 2015

    jodes - check the FAQ thread. I listed a few codes I found on the rapunzel site in the initial entry.

  • jodes001
    jodes001 Member Posts: 53
    edited November 2015

    Oh Boo-

    My insurance does not cover wigs OR cold caps. I gave them the code A9282... That really s****, we are part of a multi BILLION dollar corporation!! They will be hearing from me....GRRR

  • Andraxo
    Andraxo Member Posts: 168
    edited November 2015

    Aussie-girl - I eat super healthy and mostly vegetarian (tons of fruit and veggies, whole grains though low carbs because they make me sleepy) and eggs. I did start eating a little meat again (chicken) during chemo because I was craving it and I listen to my body. No caffeine. Exercise everyday - often exercised twice a day on weekdays, and super long outdoor adventures on weekends pre-chemo.

    A little sad that the caps failed - especially when I look at pictures from just 3 months ago with dark hair down to the middle of my back. It is going to suck to grow it back out - especially because it is so wavy, and I'm not a person who spends energy on hair or make-up.

    I may be bald, but most people still don't think I'm sick. I ran 8 miles this morning, which is 8 days post my second TC chemo and without neulasta this time. Yay!! :) I hope this continues for my next 4 txs. I'm also working full time for the 2 weeks after my chemo week.

    For those considering the caps - go with Penguin. I would if I had a do-over. The elastogels don't have a great shape for all people's heads (no matter how much you try to shape them) and that is what failed me because I followed ALL the instructions perfectly and meticulously and the caps were the right temp.

    Happy Wednesday everyone! xoxoxo

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited November 2015

    That's interesting maddisonmom and Andraxo about our diets you both eat well and I not so much and I've often thought maybe it's my diet but it looks like that it doesn't matter. It would be interesting to know why some people have really good results and others have mediocre or lousy results. Well I'm 15 weeks PFC today and all I keep telling myself is everything will be different this time next year. Hope everyone enjoys their day. Good luck to all those who are starting chemo and all those going through it now I pray it all goes quick for you.

  • aj93
    aj93 Member Posts: 37
    edited November 2015

    Thanks, dancetrancer! I sent a PM to those who asked and also to the Moderators. Once I get the ok (which I really can't see why not), I will post the details.

    Malonejen - if you need a back up for cold capping, my boyfriend and I can help you. I live in center city Philadelphia. We can start the first week of Dec if you are still getting chemo.

  • jodes001
    jodes001 Member Posts: 53
    edited November 2015

    Hi ladies!

    Is there anyone in Arizona that has used the caps??

    I'd love to know if any supplies are available near by for me! Thanks!!

    Jodi

    Nerdy

  • Andraxo
    Andraxo Member Posts: 168
    edited November 2015

    jodes001 -I'm up in Chinle AZ, but get chemo in Santa Fe NM. Chemo Cold Caps ships anywhere but I'd recommend going with penguin caps. The elastogel caps don't have the best fit (no matter how hard you try to get them right) and I failed using the elastogels. I think penguin ship anywhere too. Good luck! :

  • malonejen
    malonejen Member Posts: 20
    edited November 2015

    Hey, what does PFC mean? I am a newbie.

    Today is exactly three weeks since my first A/C treatment. I have them every other week. I am using Penguin caps and I did get the grant which was desperately needed to do it. I am late 40s, divorced mom of two teenage boys. I work at a very large place and see tons of people every day, and will be working through chemo, and don't want to look "sick." My boys would also benefit from me looking more like myself, as they have been worried. Today I started shedding and I hope it is just shedding! Send lush hairy thoughts my way today! I have two more A/Cs and then four Taxols.



  • malonejen
    malonejen Member Posts: 20
    edited November 2015

    where do you get Latisse?

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited November 2015

    Malonejen,

    You have to get a prescription from your doctor. My oncologist wouldn't give me one himself , not sure why, but said he was ok if my dermatologist gave me a prescription as long as I told her I was being treated for cancer. My insurance didn't cover it. It's pretty expensive (like $127 for a 30 day course), but it worked really well for me. I am fair and have always had kind of sparse eyelashes, but just a month on this stuff and my lashes grew back thicker than they ever were, pre-chemo.

  • Angiel
    Angiel Member Posts: 175
    edited November 2015

    malonejen, PFC stands for post final chemo .... I got Latisse from my derm. I used it throughout chemo on my lashes & brows. I lost about 30% of my brows and about 50% of my upper lashes. My bottom lashes all fell out once or twice but grew back quickly. I'm still using Latisse 5 months PFC and my lashes & brows are thicker & longer than pre -chemo. I did AC & Taxol also. As long as you are having even shedding & not losing clumps of hair, the caps are working. Good luck! Sending you warm thoughts of long hair!

  • MB12
    MB12 Member Posts: 44
    edited November 2015

    Hi Malonejen,

    Can you tell me what grant you got or how to apply for it?  Tysm!!

    Michelle

  • malonejen
    malonejen Member Posts: 20
    edited November 2015

    There is a website, ccaps.org, where you can apply for a grant.

  • malonejen
    malonejen Member Posts: 20
    edited November 2015

    It's pretty even shedding... I try not to comb my hair much, but even if I touch it with my hand a couple strands come out. But no clumps yet....

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