Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Cold Caps Users Past and Present, to Save Hair

1…481482484486487…717

Comments

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

    Thank you Hope! I saw you posted as well as mdg. It's great to have a place where those who are finished with the process can post their story and final outcome with pics - all in one place! Those who are finished, please share your summarized stories with pics or links to your pics over there. :D

    Hope, your final pic looks FABULOUS! You are great inspiration for others!

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

    Hope, I don't mind starting a FAQ thread, too, if you are willing to help me. I just need some time to collect my thoughts for the starter post.

  • wpmoon
    wpmoon Member Posts: 53
    edited October 2015

    Hi Ladies! Long time, no post. Thought I'd check in and give an update. I started chemo and capping in March, started shedding around day 25.

    image

    image

    image

    image

    image


    And my first haircut in 7 months! (4 months PFC) Cut off 4-5 inches to clean it up and get rid of the dead stuff, as well as help the new hair catch up. It also made my thin hair look fuller.

    image


  • pch
    pch Member Posts: 185
    edited October 2015

    Looking fantastic, wpmoon. Really. Isn't cutting your hair so liberating?

    I second the emotion that the only humane thing to do is have a newbie thread. The success stories focuses on pics and the newbies on tips? The tips have slightly evolved over the years (re: how often to wash the hair, shampoo brands, camouflaging products like Toppik). Some of us take a few more risks than others. How do we manage the gross tonnage (finally!) of info?

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

    pch, yes to the two threads. And, I agree...not sure how to manage the tons of tips, especially when not everyone agrees on the same tips...just seems overwhelming thinking of how to do that in an organized fashion.

  • melb44
    melb44 Member Posts: 64
    edited October 2015

    Wow you look amazing wpmoon! The haircut is great. I am getting mine cut today but only 5 weeks PFC. I can't wait!

  • tshire
    tshire Member Posts: 54
    edited October 2015

    Hi ladies! Checking back in at Day 16- so far so good!!! This was taken this morning. I'm feeling more hopeful every day. I washed my hair last night- Wednesdays and Saturdays are my wash days. I've been losing about the same amount of hair each wash since Day 10 or so, the loss doesn't seem to be increasing.

    I'm documenting this to show my MO, who told me (when I asked) that they don't work and I should "save my money." I found out that the sponsor of the Cold Caps Assistance Project, Patsy here in Austin, is a former Penguin rep and also a patient of my MO!! Patsy told me that our MO is very familiar with cold caps and she has already shown her that they do work. Our MO also knew about the Cold Caps Assistance Project- that they could help with a significant portion of the cost- and simply didn't mention it. I REALLY don't understand this!! Why can't doctors at least TELL us and let us make the decision for ourselves?? Thank God for bc.org, or else I wouldn't have found out about this! I am feeling so grateful to have the opportunity to keep my hair 5 months before my wedding.

    Cold Caps Assistance also helps people outside of Austin for everyone's FYI- http://ccaps.org/ Wonderful nonprofit!! Since I am using used caps my cost is 100% covered, other than the supplies and dry ice! I plan to make a donation after my treatment when I return the caps to Patsy.

    image

  • PatinMN
    PatinMN Member Posts: 784
    edited October 2015

    Tshire, looking good - way to throw it in the face of your MO! I was in s similar situation - no one mentioned the caps to me even though my MO's chemo center has a medical freezer and they have a dedicated room for cold capping! If a friend's sister hadn't remembered hearing something about "icing the head to keep from losing your hair" I would never have known until too late

  • jc254
    jc254 Member Posts: 332
    edited October 2015

    Tiffany, thanks for spreading the word about the nonprofit. There have been a few others on this thread who also received free or discounted caps through the organization. Cost is such a big obstacle for so many women who would like to try cold caps. The optimist in me hopes that some day they will be covered by insurance. If I ever win the lottery, ccaps.org will get a big chunk of my winnings : )

    I'm stunned that your MO told you they wouldn't work when surely she has seen evidence that they do! So very frustrating... what's with these doctors?

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    thanks for the nice comments dance trancer!Yes I'm happy to help with the tips board. I think we should share the general info to help those interested in capping learn more and/or get started. we can keep it brief and then this board is for the sharing of tips as cappers are in the process.

    Wonton, you look wonderful!!

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

    Thanks Hope, perhaps I'll have some time to work on it this weekend.

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

    Great idea on the tips board and photo board. Also if anyone wants to add there story with photos to my blog, I will happily put it there. If you don't want your face in the photos, I can edit them. No pressure, but I just want to help spread the word since the most viewed posts on my blog all have to do with cold caps. I get nothing out of this or make money off the blog...it started as my private story of BC and then after my frustration of finding out that doctors tell women they don't work (my MO included and they had a freezer and they even have caps because they participated in one of the studies done several years ago!) I finally went public with my pictures to help other women know they have hope and a choice. I have a few other success stories on there now but would not mind having more. PM if you are interested.

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    Great, dancetrancer, let me know if there's something specific you want me to round up. PM me so I'll be sure to notice it :) Also, we should post that wonderful letter that TheLadyGrey wrote to her center when they were giving her so much trouble about the caps - very straightforward and assertive. I'll ask her to send me another copy, and I'll get Susan Martinez' notes from my archives.

    Other past cappers, PLEASE post your story/pics to the new board. It will be so appreciated by all those to come our way.

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

    Thanks Hope! Great ideas! I started working on an outline today of topics to cover - will PM you when I am done and get your feedback/help. Thanks!

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

    Hi all 

    How are you all hope all those in the process of capping is doing well!! Hope everyone has a great weekend gonna be a beautiful weekend in my little corner of the world

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited October 2015

    Hi ladies - just want to jump in here and say that I used the penguin caps through my 4 treatments of TC and I did keep my hair. I am thrilled! I have thin hair to begin with and it did thin. I don't think anyone would notice. My ponytail is much smaller but I believe most of where it thinned is in the back by my neck where the cap doesn't quite hit. I am about 2 weeks out from my last treatment and still have stray hairs in my brush but my MO thinks that will end at the 3 week mark. I hope so.

    Does anyone know when you can color your hair after all this is done? I have heard anywhere from 3 months to 6 months.

    Keeping my hair throughout this awful ordeal has made a huge difference in my mental well being. I am so grateful for these caps even if they were a PIA to do. Worth every brain freeze!

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

    Suzanne50 

    I'm 11 weeks post last chemo and I'm still shedding its different for everyone. God I hope I stop soon because it's getting VERY thin now although my head is covered with hair and I do have 2 inches of new hair growing and more new hair sprouting up everywhere. I think once you stop shedding and you feel that your hair can cope with a colour it should be fine. Lots of people on this thread coloured before the 3 month mark I haven't but I'm sure they will chime in.

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited October 2015

    Good to know @Aussie-girl. I was hoping it would come to a screeching halt!

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

    Yeah me to, I've shed more post chemo then during. It's starting to get annoying now. But apparently when you do stop it stops suddenly.

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited October 2015

    Wow....discouraging to hear this Aussie-girl. I am scheduled for an iron infusion. My MO says its fine but I worry it will add to the shedding process. I have come this far, I hate to lose it now!!!! I want to keep that wig in the box and never have to take it out.

  • pch
    pch Member Posts: 185
    edited October 2015

    dancetrancer, can we make the tips for newbies thread read-only, with edits made through the moderators? Otherwise it's bound to balloon like this one. What do you think?

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

    pch,

    I have the same concern about the thread ballooning.

    As far as I can see, when you create a new topic there is no way to make it closed. A moderator would have to be in charge of that. I doubt they'd do that. Would you be willing to write them and see if they would be willing to make a thread read-only?

    I do know when you start a thread you can go back and edit the intro post if you are the one who started it. So I'm thinking if I started it I'd always be able to go back and expand the intro post if there are questions that are not answered clearly enough or new information becomes available. If someone wants support during cold capping or has more detailed questions, we can refer them back to this thread for that. I'm not so sure it will keep the new thread from ballooning, but maybe? Thoughts?


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

    Suzanne

    I have read on this thread that after some of the ladies started iron tabs their shedding stopped so maybe the iron infusion will be good keep me posted.

  • ABCDebi
    ABCDebi Member Posts: 5
    edited October 2015

    Hi Ladies,

    After being sure that I would lose all my hair, the shedding stopped suddenly around day 25 and I have enough hair to at least cover my head. I do have a few baldish spots which I comb over and use a little Toppik. One of my bald areas is where my part was. I never had any peeling there so I am not sure what happened. I changed my part on the second treatment and the new part seems ok. Is there anything I should do differently on the next round? Also, if I did freeze/burn the part area the first time, will that area grow back after chemo? Thanks!!

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

    Hi ABCdebi

    Maybe there wasn't enough contact with cap and your scalp in that spot? Make sure you get one of your helpers to massage the cap every 10 mins while it is on your head to make sure the gel is touching everywhere. My part widened to but once the new hairs sprouted it closed in very quick in fact you can't even see a part at all now😳😳 good luck with the rest of your treatments.

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

    Ladies...working on the FAQ's for newbies. I need more info. What companies are available that let you hire helpers if you need them?

  • pch
    pch Member Posts: 185
    edited October 2015

    I just PM'd you, dancetrancer.

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    I hired a helper from Cold Cap Therapy Midwest, www.coldcaptherapy.com She's located in Minneapolis but I flew her in to Chicago to train us and assist with the first round

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

    Thanks ladies!

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited October 2015

    I use chemo cold caps & you can hire a helper if in the Dallas area

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.