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Cold Caps Users Past and Present, to Save Hair

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Comments

  • shipsgirl
    shipsgirl Member Posts: 197
    edited June 2013

    Hey Sockmonkey, I've been wondering how you were doing.  I was just thinking of you yesterday but somehow missed your post.  I'm sorry your shedding just kept going.  I sometimes think mine will too, but I'm doing the best I can to prevent it.  If it happens, at least I know I've tried.  Your advice and input in my early days were so helpful!

    I have found Penguin to be completely non-responsive.  If someone hadn't given me Geralyn's number (which wasn't on the new website at the time) I'd have missed out completely.  Thank heavens for Geralyn.

    My question to everyone is: the boxes for the caps have taken a beating. They are so brittle when on ice and I have had several casualties.  Where can I get replacements?

  • schoolmom
    schoolmom Member Posts: 327
    edited June 2013

    I read someone on here talk about a container store.  I guess it depends where you live.  The big container stores have bigger selections.

  • makingway
    makingway Member Posts: 465
    edited June 2013

    Storage Box replacement can be found here: The Container Store

    3.2 qt. Klip-It® Rectangle 3 ltr.

    9-1/4" x 6-7/8" x 4-3/4" h

    Item# 10042176
    $7.49 ea

  • jc254
    jc254 Member Posts: 332
    edited June 2013

    Hope, I was glad to see your recent post. I've been wondering how you're doing since finishing with the caps. I was following your progress as I was deciding whether to use the caps and as I began treatment. I hope your hair's holding up and you're feeling well.  I consider everyone on this site part of my cold cap team.  Your coaching and encouragement has been invaluable.

    My last treatment is today. I thought I would feel happier but the nerves are kicking in this morning. I think I'll feel more relieved when I get through the side effects of this final round. 

  • fab1
    fab1 Member Posts: 43
    edited June 2013

    Hi girls

    I've just been given a date fir my 1st chemo, 2nd of July. This was delayed due to my surgery scare nit healing, fingers crossed that im good to go on 2nd July .

    Just a quick question my partner us thinking if getting a puppy. Is this a good idea?

    I've been reading the updates of all those who have started tge chemo journey and I pray you all end your journeys with as little side effects as possible and a speedy recovery to road if normality. Mt prays and thoughts ate with you all. Xxx

  • sciencegal
    sciencegal Member Posts: 546
    edited June 2013

    Kay good luck with your port placement procedure! I love having one, I cant imagine having my veins accessed each time, through all of this. Best wishes.

  • sciencegal
    sciencegal Member Posts: 546
    edited June 2013

    JC congrats on your last chemo- I hope it is easy and with minimal SEs.



    Fab I cant imagine having gotten through this past eight months of cancer-chemo-surgeries roller coaster ride without my two little dogs and especially the one who is the "mama's boy" and my comfort dog, he was by my side through every step. Puppies are a lot of work but SO worth it. I would say yes!

  • schoolmom
    schoolmom Member Posts: 327
    edited June 2013

    FYI just got the results back on my bloodwork and followup CT scan.  3 mos after final radiation and 5 months after final chemo..............all clear , everything good.  YEAH!!!!!!!!!!  My onc. still will not remove port from chemo until the results of the next CT in 3 mos.  Bummer.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited June 2013

    Yay schoolmom!  My onc made me wait a year post chemo before letting me get my port out.  He's very conservative, though. 

  • shipsgirl
    shipsgirl Member Posts: 197
    edited June 2013

    Hooray for you, schoolmom!!!  Fabulous news!

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2013

    Great results, schoolmom!  I was assuming I could get my port out right after my final Herceptin in September, but...I guess we'll see.  I never had any scans throughout this whole thing, except the CT scan for set-up of radiation, and I don't think the oncologist plans to do any scans unless I have symptoms.  I do see the breast surgeon (who also put in the port) in July in connection with my first mammo since diagnosis, so I'll talk to him about it then.

  • SusieQ_inCA
    SusieQ_inCA Member Posts: 57
    edited June 2013

    AWESOME news schoolmom! Congrats!



    JC- congrats on your final treatment!!!



    I am 2 weeks from final treatment and shedding has slowed to just being annoying. Got my first haircut since February and feel almost normal again, just in time for my husband's 40th birthday party tomorrow. Thank goodness for cold caps! Those of you still in the thick of it, you'll get there, with hair! They do work!



    Keep the good news coming, everyone!

  • tmb173
    tmb173 Member Posts: 94
    edited June 2013

    Shedding has slowed considerably- yay :)

    I have also been using a warm water, baking soda, and salt rinse for mouth thrush.  Still get a little emotional, but things are looking up.  I get an extra week off because of a family wedding and I think its saving my life- I'm not sure I could face "the chair" again.  

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Please help! I am trying to do all my shopping and I cannot find the recommended shampoo products.



    For example, Regis DesignLine shampoo and conditioner. I can only find it on eBay. I called the only Regis store in my area and they do not have it. Is everyone using the organic line In the green bottles?



    Dermorganics...which products? Where to buy?



    Alterna spray in conditioner. Is this the product the life volumes zing or sun hemp?, or breast cancer awareness? Can someone provide a link?


    Also has anyone uses castor oil for brows and lashes? I did latisse before and really didn't notice a difference. Castor oil is so cheap so I figured it was worth a shot.



    Alternative product recommendations are welcome too. I need to get something soon. I already use sulfate free shampoos but they are all creamy.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited June 2013

    I used Nature's Gate sulfate-free shampoo (organic/health food type stores usually sell it).  

    I did not use conditioner (rinse out kind), but I did use a spray leave-in detangler/strengthener by Joico called K-Pak liquid reconstructor.  It can be kind of hard to find, but you can use this link to see if a distributor is near you. 

    http://www.joico.com/products/k-pak-liquid-reconstructor/

    I love this product and found I had much less shedding when combing out my wet hair if I used this product first. 

  • schoolmom
    schoolmom Member Posts: 327
    edited June 2013

    I was afraid to comb at all during chemo.....I used a pick sometime but never on wet hair......I just fluffed with my fingers and detangled with my fingers when the big clumps came.  I hated that!  I supposedly can color and cut the beginning of July, 6 mos PFC but because it is summer and I am in and out of the pool I will probably wait until Aug. before I go back to work. 

  • SusieQ_inCA
    SusieQ_inCA Member Posts: 57
    edited June 2013

    Marsha,  here is what I used/still use:

    DermOrganic Argan Oil Sulfate-Free Shampoo

    http://www.amazon.com/gp/product/B003JKHUR4/ref=oh_details_o04_s00_i00?ie=UTF8&psc=1

    I also use DermOrganic conditioner.  I tried Kenra leave-in conditioner but found it made my hair feel greasy so I switched to DermOrganic conditioner.  (the kind you wash out)

  • Hortense
    Hortense Member Posts: 718
    edited June 2013

    I use DermOrganic also. I find it at TJ Max stores, but it can be ordered on Amazon which is where I got my first supply.

  • makingway
    makingway Member Posts: 465
    edited June 2013

    marsha1970-This might help: http://penguincoldcap.wix.com/help#!do-it-yourself/cy41

  • makingway
    makingway Member Posts: 465
    edited June 2013

    Marsha1970-This might help: http://penguincoldcap.wix.com/help#!do-it-yourself/cy41

  • makingway
    makingway Member Posts: 465
    edited June 2013

    If the link doesn't work, click on the link in my bio. From there go to the 'Do it Yourself' page.

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Thank you, that list of shampoos is helpful.



    So the one person I've enlisted to help me is a bit uncomfortable with the dry ice. She is trying to conceive and she has asked her ob/gyn if its safe. I'm thinking I need to try to find someone else as a backup or helper. I don't have many friends who can be out of work, and I don't know why but I'm embarrassed to ask people I don't know well.



    I know this one person who is always looking for work. I'm thinking she might do it, and if others do it she would have experience and I could refer her. Does anyone know what a fair wage would be? I know there is a service in California, which has a much higher cost of living.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited June 2013

    Marsha, I don't know a fair wage, but just want to say if I were there I would help you!  Don't discount the kindness of "strangers".  There may be someone through the American Cancer Society or Susan Komen Foundation who would LOVE to do this for you.   Call them and see if there is a volunteer who would be willing to be trained. 

  • makingway
    makingway Member Posts: 465
    edited June 2013

    Marsha-Charges range from $150.00 to as much as $900.00 per day depending on where you live. I'm sure a freind would be happy to help you! Have her read the dry ice instructions on my website, it will save a lot of headache.

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    I think if we get through the first time we will both have less anxiety. We are going to do a dry run the weekend before.



    I have a caring bridge and I know if I made a call for help someone would come forward. It just seems really personal and not something I want to ask so many people, especially if it doesn't work out. I don't want the pressure of people asking about my hair. I'll see about the ACS. Maybe my church. Most of my friends work and it seems like a lot to ask to have them take time off. It seems like a big commitment.



    Marsha

  • sciencegal
    sciencegal Member Posts: 546
    edited June 2013

    Hi Marsha- I would help too if I was there!

    I would say to reach out for help. There are kind souls out there. I hope that some of them are in your town.



    I would not feel pressure about the hair, regarding asking for help. If it doesnt work fully for some reason for you, the helpers would know that they did their best, and the hair will grow back more quickly than for those who got the full dose of chemo to their follicles.



    BUT, for most of us it does work and it is something that your helpers can feel really good about. Mine are so happy and proud that they could do somethng so real to help.



    Reach out through your caring bridge- you are deserving of this help. good luck!!!!!

  • jc254
    jc254 Member Posts: 332
    edited June 2013

    I'm finished!  Had my last treatment yesterday and boy does it feel good to cross the finish line.  Feels even better to cross it with hair.  My oncologist and the nurses were all duly impressed with the final result. The caps are on their way back to Michigan.  For those who started around the same time as me- hang in there (Curly and Shipsgirl and there may be others).  I know you have a longer tougher road than I but you will get there and I'll be rooting for you.  I'll be back (with pictures) after I push through the side effects over the next few days.   

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited June 2013

    Huge congrats jc!!!!!  PFC!

  • shipsgirl
    shipsgirl Member Posts: 197
    edited June 2013

    jc - let the bells ring out and the banners fly!!!!  Hooray for you.  with hair.

  • SusieQ_inCA
    SusieQ_inCA Member Posts: 57
    edited June 2013

    Yay JC!  Welcome to the PFC club, something no one wants to join but is somehow happy to finish the journey and get there.   In the meantime, we look forward to welcoming new members who are still in the journey and will root everyone along until they get there.  Embarassed

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