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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    hi captain support. My husband was my cold capping buddy through four rounds of AC and twelve weekly taxols. Kept my hair. Now three weeks post final taxol. It was worth it to me. I was going to be brave and shave it all off, but he encouraged me, saying you'll never know unless we try. My doc gave me a 50/50 shot of keeping it. It has made a huge mental difference in my fighting cancer. Lots of AC posts on pgs 429-433, or do a search for AC cold cap in the search section on the left side of the discussion boards. Good luck.

  • Alibeths
    Alibeths Member Posts: 167
    edited March 2015

    So Is PCC the only COld cap available to us? All others aren't available in the US?

  • Leslienva
    Leslienva Member Posts: 343
    edited March 2015

    Alibeth, you can also get Elastogel caps on Amazon.

  • pcher5
    pcher5 Member Posts: 10
    edited March 2015

    It has been a year since. I was on TAC and used elastogel cranial caps. If you search my username you will see my old posts with updates during my use. If there is someone who's interested in buying the caps I have six of them that I'm willing to donate to someone who really needs but cannot afford it or if you can afford it sell it for half the price. PM me for more info.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    Yesterday, 25 days after my first chemo, I had my first big shed. Well, it looked like a lot of hair, but who knows what's yet to come. It did make me worry a little. Sad

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


    BB I freaked when my first shed came....it was a lot, but you can see photos on my blog that even though a ton came out, I still had a full head of hair and no one would know I was doing chemo.  Hang in there sister!  You got this! :)

     

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited March 2015

    ok ladies, freaking out a bit.... I had my last AC almost 3 weeks ago, and will be starting weekly Taxol..... I have lost about 50% of my hair, shedding has slowed a bit... but my head is itching like crazy..... the front is a little sore this am... I did have a lot of breakage from my frostbite to the front of my head from the cap... any ideas what i can do... and why is my head itching!!!! now before chemo when i was about to have a big hair growth spurt my head would itch, but i have seen on some of the other boards that that means there hair is about to completely fall out... help i am panicking big time!!!! I am afraid I am about to go bad!!!!

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi, CaptainSupport,

    My first A/C treatment was this too:

    (A= 60 mg/m2 and C=600 mg/m2)

    But, because of the side effects of that amount my MO dropped my dosage by 15%.

    I never really thought about it, but come to think of it, I am not sure if he only dropped the A by 15% or

    both medicines.

    I also had Taxol, but I had it every two weeks. I believe that dosage was 175.

    I didn't lose anything at all on the Taxol.

    Unfortunately, though, between the A/C and the latissimus dorsi double mastectomy I did.

    I still have a fairly full head of hair, though.

    I hope you find this helpful :-) Please remember nothing ventured nothing gained..

    I wish you and your wife the very best!

    Lynda

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi, Tripper4ya,

    I had itching and tingling and swore I was going to lose all of my hair.

    But, I am SO happy to say I did *not*.

    Maybe, your scalp is dry. I know others have posted suggestions to ease a dry scalp that will probably help you.

    I think I remember something about apple cider vinegar, and maybe, baking soda or powder. But, please

    do not quote me on that. I would do a search.

    And a quick fyi-I didn't really lose any hair on Taxol, so your hair may start growing.

    Hope I have somewhat eased your mind.

    Wishing you all the best!

    Lynda

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited March 2015

    JoeyJamesMom,


    That is great to hear.... I have noticed some stubble under my pits that wasn't there, as well as stubble to the pubic region, so maybe the tingle, itch is my hair wanting to start growing again. I noticed that you are Triple Negative... I am as well and am new to the triple negative world, mine was a grade 3 as well with 0 node involvement, how are things going for you? I know I worry about reoccurrence a lot!! how long after your AC did your hair start to grow? How long did you keep your caps on after your Taxol treatment?

  • Alibeths
    Alibeths Member Posts: 167
    edited March 2015

    I just had a recurrence and I am tn😫. Waiting for a plan. I'm thankful my recurrence was in ONE stupid lymph node!!! But I was node negative 2 years ago at my initial diagnosis. This is all such a nightmare. If I do chemo again, I will DEF be using the cold caps. Stay strong !!

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi, Alibeths.

    I am also sorry to hear your dealing with cancer again. What a nightmare!

    Question for you-How did they find it was in your lymph node?

    I was very lucky that I found my lump last June because a mammogram would have

    never found it. It was up high on my left breast.

    I worry about the cancer coming back and not knowing about it until it is too late :-(

    Thank you.

    Lynda

  • Leslienva
    Leslienva Member Posts: 343
    edited March 2015

    Tripper4ya, I put about a capful of apple cider vinegar in with the shampoo and left it on my scalp for about a minute or two.Then I put two capfuls in two cups of water and used that as a rinse. It got rid of the itches for me.

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi, Tripper4ya.

    I feel great now, thank God!

    I finished my chemo treatments on Nov. 7th. I had no major hair loss and my hair looked as it did before.

    Dec. 15th had my double mastectomy and my hair looked good.

    But, by the middle of Jan. my hair looked horrible because I had been shedding SO much!

    I also laid on my back for weeks because of the surgery and drains, so I do not think that helped at all.

    In the beginning of Feb., I ran my fingers through my hair and I could feel so much stubble. I couldn't believe it.

    I didn't even know I lost that much. It is slowly but surely coming back in.

    Regarding using the caps with Taxol. I think I kept the caps on 4 hours after my treatment.

    I have to admit, I do worry about the cancer coming back. My Mom had it 3 different times before it took her life

    in 2011.

    I wish you luck :-)

    Lynda

    P.S. I was also new to Triple Negative even though my Mom had breast cancer 3 times. It is scary, huh?!



  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi again, Tripper4ya.

    I forgot to mention that I had my Taxol first, then I had the A/C.

    So, you will probably do a lot better then I did.

    I hope this puts your mind somewhat at ease :-)

  • Leslienva
    Leslienva Member Posts: 343
    edited March 2015

    Lynda, Alibeth, and Tripper4ya, I'm not Triple Negative but have three friends who are and they're doing great! All are at least six years from original diagnosis. One had a recurrence but she's doing well, too.

  • JoeyJamesMom
    JoeyJamesMom Member Posts: 78
    edited March 2015

    Hi, Leslienva.

    Thank you very much for letting us know that.

    It is really great to hear!

    Have a good night :-)

  • wpmoon
    wpmoon Member Posts: 53
    edited March 2015

    BB - I'm on TCH-P, once every 3 weeks for 6 round. my shed hit around day 23-25. I have a thin spot on top of my crown, like dead center. I think where the cap doesn't quite hit my scalp because of an air pocket it makes due to the shape of the cap, no matter how tight I get the chin strap. I was able to move my hair around to cover the majority of the spot. It just looks a little thin near my part, but it's not too bad. It just feels like every time I move my head, more hair falls out. But, everyone here has reassured that the shedding slows down, so I'm keeping that in mind, and just waiting for that time to come.

    I know many of you have tried Toppik, and I might give it a go, but does it leave a residue or get flaky?

    My scalp has been dry, and I have dandruff now too. Something I never dealt with before. But at least if I don't touch it or move my hair all day, you can't notice.

  • wpmoon
    wpmoon Member Posts: 53
    edited March 2015

    I'm using Chemo Cold Caps, by the way. Since my treatments are spread out, the cost worked out better for me for the rental.

  • makingway
    makingway Member Posts: 465
    edited March 2015

    wpmoon-Did the company provide you with straps? If not, you can make some yourself to secure the caps closer to your scalp. You can get what you need at a fabric store. Buy 2 inch elastic bands and sew 4 inch velcro to the middle of strap, and each end.They don't stick well to the Elastogel caps so you will need to put something on first for the straps to grab onto. I found these at the 99 cent store: http://www.westendmedicalsupplies.com/Superband-Elastic-Wrap-Wrist-Ankle-Elbow-_p_1314.html

  • CaptainSupport
    CaptainSupport Member Posts: 3
    edited March 2015

    Thanks, ladies. This is really encouraging. I think I'm going to order the caps and encourage my wife to soldier it for the next 6 months. All the best.

  • Alibeths
    Alibeths Member Posts: 167
    edited March 2015

    Has anyone on here done

    Carboplatin???

    How was it? I did ACT 2 years ago and it wasn't easy.....My one said this is what she is thinking for my recurrence in my Node. Its every 3 weeks she said for 4 cycles. Thanks for any input...Also, did the CC work with this regimen?


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


    I know there are some girls that were on Carboplatin.  I know caps worked....hopefully someone with experience will reply.

  • Alibeths
    Alibeths Member Posts: 167
    edited March 2015

    Thanks MDG. : )

  • pch
    pch Member Posts: 185
    edited March 2015

    Hi Alibeths, I'm on taxol/carbo and the caps worked great. I have had the normal amount of shedding (probably around 20-30%)and some loss around the hairline (the usual issue with fit in the back and around the ears), but like with the others, if you didn't know I was going through chemo, you wouldn't know. I'm also every three weeks. After the fourth cycle I have plenty of hair left with two to go. (I also think the taxol is harder on the hair than the carbo. So you may do even better than I did.) Sorry to hear you're back, but good luck and don't worry about your hair!

  • pch
    pch Member Posts: 185
    edited March 2015

    image


    Ok, so here is a totally crappy, unwashed hair day (taken today) after four taxol/carbo treatments. And while my hair is neither as plentiful nor as glorious as my dog's (I've probably lost 20-30%), I don't think he would guess I'm on chemo. See below for the back of my hair.

  • pch
    pch Member Posts: 185
    edited March 2015

    image


    Here's the back. Again, in desperate need of a trim and unwashed. But I'll take it. Oh, and today I felt the stubble of new growth, in my part, thank god. :)

    (Full disclosure: My part is a bit wider than shown here and above. But I just use Toppik medium brown to fill it in. Toppik is a godsend for the thin parts. Been using it for about a month with no ill effects.)

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited March 2015

    Hey pch!! You're looking BEAUTIFUL as always!!! Argo, gorgeous too! xoxo

  • Alibeths
    Alibeths Member Posts: 167
    edited March 2015

    pch, OMG!!!!!! Your hair is gorgeous!!!!!!how is chemo

  • Dakjo
    Dakjo Member Posts: 28
    edited March 2015

    pch - Your hair looks beautiful!

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