Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Cold Caps Users Past and Present, to Save Hair

1466467469471472717

Comments

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

    I never used Latisse. My lashes thinned at one point, but not at all to the degree that anyone could tell. I did lose half an eyebrow about 2 weeks after finishing chemo. It grew back in a week.

    I'm not convinced Latisse helps prevent loss of eyelashes if used during chemo, but I could see how it could accelerate the re-growth process.

    I was too concerned about eye color changes (I know, the risk is small) to mess with Latisse.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited August 2015

    Wow, just a week to grow back? That's amazing

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

    That's what I recall. It was REALLY fast. They probably weren't full length by a week's time, but they were filled in enough that it was not noticeable.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited August 2015

    Dancetrancer, do you remember how long did it take after PFC before any thin spots started filling in on your head?

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

    I had the most extensive hair loss at the nape of the neck and behind the ears, not on the top of the head. So, because my hair is long, I didn't even notice bald areas, nor when they first started growing in. It took me several months before I noticed several inches of curly hair growing into those areas under my other hair. Sorry, I'm not as helpful on that question. I do believe the long hairs of the head take longer to regenerate than the shorter hairs like eyebrows.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited August 2015

    Did the curly hair blend in pretty well with your straight hair, or did you have some kind of combination thing going on? Was it hard to style like that? When did you first highlight your hair PFC?

  • RoxGo
    RoxGo Member Posts: 5
    edited August 2015

    Hi ladies!

    I'm about to order my cold caps as I will be starting chemo next week. I have very thick hair and noticed on the penguin cold cap site that additional gel headbands can be ordered for very thick hair. I was wondering if anyone ordered the additional headbands to use along their hairline?

  • Angiel
    Angiel Member Posts: 175
    edited August 2015

    I used 2 of the headbands & have thick hair also. I had great results with PCC so I would definitely recommend them! Good luck!!


  • Lori45
    Lori45 Member Posts: 8
    edited August 2015

    Did you start latisse at the start of chemo or did you start it weeks ahead. I'm just trying to decide when I should start latisse if I'm required to do chemo after my mastectomy

    Lori

  • RoxGo
    RoxGo Member Posts: 5
    edited August 2015

    Thanks for your response angiel:) going to add the headbands to my order!

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

    Wildflower,

    Where it grew in mixed with my other hair, the curly hair was great! It gave my hair body like it never had before - just a nice little wave. I could dry it then scrunch it with my hands - never did I have such a perfectly easy hairstyle. I no longer have much wave left - I miss it! Back to the curling iron! :)

    Where it grew in underneath at the nape (where I lost a bunch), the curls were more defined, but mixed in fine with my hair - as I said, my hair is long, so the extra curl wasn't hard to handle at all. I liked it.

    I did my first highlight 6.5 months PFC. I was scared b/c bleach is so hard on hair - different from color. Bleach strips the hair of color, drying it out, vs getting color - which deposits color on the strands and conditions it. At least, I think this is correct. A stylist I am not! :D

    Here are my pics. It includes showing the curly hair growing in at the 6.5 month mark plus results from from first highlight and additional highlights as time went on.


    https://coldcapphotos.shutterfly.com/pictures/8#%2...

  • Lori45
    Lori45 Member Posts: 8
    edited August 2015

    DancetranceThank you for sharing your pictures :)

  • suladog
    suladog Member Posts: 837
    edited August 2015

    Roxgo,

    I ordered the extra bands too, as I have curly hair which can be hard to manage. They worked just fine keeping everything under my hat

  • Angiel
    Angiel Member Posts: 175
    edited August 2015

    Lori45, I had been using Latisse off an on for 2 years - never very consistent- but once I was diagnosed and had read that I may lose my lashes and brows, I started using it religiously. That was about 2-3 weeks prior to my first chemo.

  • RoxGo
    RoxGo Member Posts: 5
    edited August 2015

    Hi ladies!

    So I have a question for those of you that went to an infusion center that had the biomedical freezer. How many days before your infusion did you drop off your caps in the biomedical freezer? My directions from penguin say 48 hours but when I called the nurse navigator she told me people drop them off the day before. I just want to make sure I'm doing everything right! Any feedback is much appreciated :)

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited August 2015

    Dancetrancer, thanks for sharing those photos! They're pretty inspirational!

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

    You are welcome!

  • PatinMN
    PatinMN Member Posts: 784
    edited August 2015

    Roxgo, I'm no help because I didn't have to schlep caps back and forth - they were in the freezer all the time. There were 28 caps in the freezer - two full sets. But I had a local Penguin rep who handles everything. I would say if you bring them the day before, make sure you get them there as early as possible. We sometimes had a problem finding caps that were cold enough if they had been used the previous day

  • Angiel
    Angiel Member Posts: 175
    edited August 2015

    Roxgo, I used the same center as PatinMN. We had a freezer so I didn't have to worry about bringing the caps in either. However, there were a couple of times when I had to have my infusion on a Tuesday when someone had already used the caps on Monday... For those instances, I had to bring dry ice for the caps because I was told they needed 48 hours in a bio freezer to reach the correct temp. If not, packing them with dry ice was the only alternative to get them to the right temp in under 48 hours. Do not take any chances with the temp of the caps.

  • RoxGo
    RoxGo Member Posts: 5
    edited August 2015

    Thank you for the responses ladies! I definitely don't want to take any chances with the temp of the caps

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited August 2015

    Hi ladies I've had 1 round of AC and will be going for my 2nd on Tuesday. Last night I noticed my scalp is looking dry and flaky. Like its peeling. Have any of you experienced this? If so did you do anything? I have only washed my hair once this week and not scrubbing it. I'm also washing it 3 days before and not till 3 days after chemo.

  • Angiel
    Angiel Member Posts: 175
    edited August 2015

    Jbandkb, what you are describing is pretty common. It could either be "frost nip" as my capper called it which is a lesser degree of frost bite. I suffered that after one capping session. If that is the case, there is not much you can do because if you try and get the flakes out, you risk losing the hair that is in those follicles. I looked like I had massive dandruff for about 2 weeks until the flakes and dead scalp worked their way out of my hair. If it is not frost related, it's most likely due to the chemo and the lack of washing which causes the dry, scaly patches on your scalp. They also can become itchy. Whenever I experienced this, I applied a mixture of apple cider vinegar mixed with water in a spray bottle to my scalp. I smelled like a pickle but it really helps. Do try and wash 2 times per week, though. It is important to get the chemo toxins out of your scalp.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited August 2015

    ok I think it's just from the chemo and not washing like normal. I do plan on washing my hair on Friday which will be my 3 days before chemo. Really hoping my hair holds out because I'm coming close to the time it'll start to shed.

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

    Yes the most likely cause is "cradle cap" from not being able to wash as often. I had this and was told by Penguin to mix a very small amount of apple cider vinegar in with my shampoo the next time I washed. I did that and wa-la, problem fixed, flakes gone.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited August 2015

    Ok so the more I look at it I think it's frostbite. I looks like one large piece of skin & seems dry. So I'll leave it alone if nothing can be done. Hopefully I don't lose my hair there since it's right in the front.

  • Angiel
    Angiel Member Posts: 175
    edited August 2015

    Jkandkb, if it makes you feel better, when it happened to me, I didn't end up losing the hair in that area. I had huge flakes - more like scabs, that worked their way out and my scalp stayed red for at least a week but my hair remained. Make sure you change your part with every cap change to prevent it from happening again. And if there is an area of exposed scalpthat looks like it is freezing while capping, add a piece of gauze or something to protect your scalp.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited August 2015

    I am so glad I found this site you are all so helpful. Thank you.

  • alice12
    alice12 Member Posts: 46
    edited August 2015

    ladies, does the hair shred occur anytime every day throughout the chemo? or only when we brush our hair or wash our hair? I am about to shred, just want to know what to expect.

    Thank you for the input.

  • Leslienva
    Leslienva Member Posts: 343
    edited August 2015

    Strands may come out when you run your hand through your hair, when you comb it, etc. You'll probably find some strands on the back of your chair or pillow, but it's not constant. Remember, you lose hair even when you're not on chemo you're just more sensitive to it while you're cold capping.

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited August 2015

    Angiel how did you get rid of the big flakes? That's what I have right now. They aren't attached to my skin anymore just my hair. How did it work its way out