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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Ang7
    Ang7 Member Posts: 568
    edited March 2016

    Oh Suzted7,

    I am so sorry. I am an old PCC user but I wanted you to know that I am thinking of you tonight and sending you a big hug.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited March 2016

    Suzted - I'm so sorry. Sad I'm sending you hugs, too.

  • char1110
    char1110 Member Posts: 13
    edited March 2016

    So sorry Suzted! That has to be really frustrating. Sending big hugs your way!

  • Suzted7
    Suzted7 Member Posts: 38
    edited March 2016

    I've noticed not much mention of human hair wigs. Are any of the ladies using them at all or no? If this is the way I have to go, then I'm going to start looking. Obviously it doesn't have to be human hair but since I've always always had long curly hair...the synthetic wigs won't cut it. Anyone???

  • estelalorca
    estelalorca Member Posts: 26
    edited March 2016

    I'm so sorry Suzted7, i've had quite a bit of thinning but I'm using a product to create the look of fullness. The shedding has slowed down a lot for me.

    Since this is my 2nd time around I decided to try cold caps, but when I did chemo 7 years ago I purchased a synthetic wig. It was a good quality wig and I received a lot of compliments on my "hair" when I was out and about. I decided on synthetic because I didn't want to have to style it. The cut was a classic bob with bangs and so the style was built in. I could wash it and let it dry without any maintenance. So that's my experience with a synthetic wig.

    So if you like to play and style hair, then real hair is definitely the route you should take.

    Good luck!

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    I'm so sorry Suzted, I wish this worked for everyone. It would be so less stressful. ((Hugs)) to you

  • LeesaT
    LeesaT Member Posts: 14
    edited March 2016

    I've been off the board for a while. Here's the update from my world.

    My port wouldn't work correctly when I arrived for my 4th dose dense AC treatment. Long story short, my port was replaced and my schedule slipped a week as various doctors tried to decide what to do to fix the port. I never expected to be so disappointed to not get chemo!

    New port was put in on a Tues. I went for last AC the next day. Probably not my best idea, but I'm trying to stick to the schedule. I want to check these off and be done! I was exhausted that Friday and Saturday, but I got both tasks checked off.

    I started the first of my 12 weekly taxol treatments last Tuesday. I felt so much better than the AC. I even managed a trip to the beach with friends for 1 night this past weekend. I'm checking off taxol 2 tomorrow.

    I'm still capping. My hair started shedding around AC #2. It was fairly constant, I would estimate I've lost 60% of my hair, but I still have hair, eye brows, and eye lashes. As of this weekend, it has gotten thin enough that I wear a loose baseball cap when I go to my son's lacrosse games or out in public. I'm calling it a win so far. As of this weekend the shedding has slowed down so I'm planning to continue capping. I too had thought of stopping.

    The biggest surprise is that after not shaving my legs since the first week of January, I noticed my knees were just slightly "prickly" this weekend, and as of this evening, my legs are too. I'm watching to see if the taxol will take this hair too, or if I might be lucky enough for some of the hair that thinned to come back earlier than expected.

    Cross your fingers and stay tuned. Cheering all of you on from here

  • ILoveArt
    ILoveArt Member Posts: 25
    edited March 2016

    LeesaT

    I'm so happy to hear you got through the AC and are well on your way with T. Keep on capping, I'm counting on you to pave the way for me! My first AC is next Tuesday. Got my caps yesterday. I'm having a little cold cap helpers party to practice putting them on my head! My inbox exploded with volunteers, so heartwarming. I'm not getting a port for now. Don't know if that is good or bad. I'm as ready as I'll ever be.


  • LeesaT
    LeesaT Member Posts: 14
    edited March 2016

    Great to hear from you ILoveArt

    I'm still capping. Today went well, but the weight of the caps over the entire length of time continues to amaze me. Haven't used the travel pillow yet. A regular pillow at chemo has helped, but I'm thinking of taking that travel pillow next week. Throw 1 in your bag if you have it. I also take a heated throw I can plug in which is a huge help.

    If I lived closer to you, I would pop by to assist or visit for treatmnet one. What a blessing friends are at times like this! You can do this.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    I love your determination, LeesaT! Inspiring!

    ILoveArt- best of luck with your capping!

    The neck/travel pillow has saved me! I even go back and forth to the bathroom with it! Kind of feels/looks like a neck brace and a scull helmet of sorts, but I don't care. I get some strange looks at the infusion center b/c no one has used them here before.

    I have Taxol #3 on Thursday. No shedding yet...keeping my fingers crossed that I can hold out as long as possible without the big shed!

  • angiesgo
    angiesgo Member Posts: 16
    edited March 2016

    hi all, I just had taxol 10 yesterday , so two more to go - yay!!!

    With taxol I never got the big shed, just a constant shed from taxol 5.

    Been so happy with the outcome so far, yes my hair has thinned but you can't notice at all, helps that I had thick hair to begin with. I've been documenting it all so will try and post some pictures when I'm done.

    Worst thing for me has been trying to cover the roots.

    Keep capping everyone, it's so worth the effort, I love the anonymity it gives me, I can choose who I can tell what I'm going through and most importantly I look like the same mummy to my daughte

  • Ruddycat
    Ruddycat Member Posts: 13
    edited March 2016

    Hi! I haven't posted in a while - since my first cold capping day - and I think things are going ok but I'm not sure. Would love to have opinions on this amount of hair loss. Hope these hair pics don't gross anyone out but this is the majority of what I've lost so far:

    1st pic - hair washing on Day 19 - first noticeable shedding but I was expecting it

    2nd pic - about what I'd lose every day or so when combing - Days 20 - 27

    3rd pic - after hair washing on Day 28 Pretty horrified by the amount in the drain but even more so by the long knots of hair that I had to pull free while rinsing. However, I don't have any obvious bald spots and my hair looked relatively normal after it dried. It definitely feels thinner but doesn't really look it.

    image

    image

    image

    I have to wash my hair tomorrow because I actually have to get out of the house this weekend but I'm TERRIFIED of losing that much hair again. I can't imagine that I could and still have much left. Has anyone else lost this much at once??

  • Suzted7
    Suzted7 Member Posts: 38
    edited March 2016

    imageWOW!! The caps REALLY REALLY didn't work for me then!!! Here's what I lost in 2 DAYS....and I HAD a LOT of hair to begin with..like a LOT. NOTICE how you can't see THROUGH the pile of hair?? Yeah....that much.

  • Suzted7
    Suzted7 Member Posts: 38
    edited March 2016

    I had a lot of hair to shed from....and it just kept going. All around the crown is thinning out...along the sides. 😢. I still have about 30% percent but I DEFINITELY cannot go outside now without a hat or scarf. Those days are over for me. 😖😖😖image

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Suzted7- I'm so sorry you had so much hair loss. Did you talk to anyone at PCC? Are you on Taxotere?

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    angiesgo- Congrats on almost being DONE!!!! I just finished Taxol #3 today

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited March 2016

    Ruddycat and Suzted7:

    Ruddycat - It appears that a lot of us lose more hair during the first 28 - 31 days in one big shed. Then for many of us, the shedding tapers off. That's what happened to me, anyway. If this holds the same for you, then you will start to see less shedding going forward.

    A couple of months ago I asked my dermatologist whether washing my hair during chemo and cold capping would have caused more to come out. She told me no, that was a myth, and what really happens is that as hair falls out, some hairs fall out and drift free, but others get caught on other strands of hair instead of falling free. Then when you wash your hair, the washing causes these trapped hairs to come loose. This makes it look like you are losing more during washing, but you're actually just removing hair that has already come out. So unless you are really pulling or tugging or something really extreme, (and who would do that) just washing your hair is not going to make more of it fall out than was already doomed to do so anyway. Hope this helps relieve some of your stress :-)

    Suzted7 - Wow, that is a lot of hair. I'm sorry the caps didn't work for you :-(

    Hugs to both of you, and all my good wishes as you continue your treatments.

  • Beatmon
    Beatmon Member Posts: 617
    edited March 2016

    So excited to see the first "Cold Capper" at my facility today. I had a very interesting visit with the company rep. tha was up from Dallas to help. I was able to be very encouraging to the young lady using it from all I've read here. I'm so in hopes that it works well for her.

    I will certainly do it if I have to go back on another hair loss chemo...which could be at any time since I'm a lifer. I refuse to be Uncle Fester again! I was not a pretty bald person.

  • Suzted7
    Suzted7 Member Posts: 38
    edited March 2016

    Nolagirl.....I'm on Taxotere.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited March 2016

    Hi Beatmon,

    Here's hoping you continue to come visit this thread only as an observer, and not as a capper!

    Hug

  • phaila
    phaila Member Posts: 177
    edited March 2016

    hi all, my chemo starts next Thursday. I'm just now deciding on getting these caps...if I'm on TC it should work, yes??? I wouldn't have been able to afford them if my dad hasn't said he would pay for it. I so wish our center Carried these for patients:( So for TC the results have been positive right? If I don't lose my hair it would make all of this hell that much easier. I was mostly worried about volunteering at my sons elementary school. I'm like the cool fun mom all the kids run up to and hug when they see me and I think I would be heartbroken when they wouldt recognize me and were scared to be near me.

  • Scarlett152
    Scarlett152 Member Posts: 43
    edited March 2016

    phalia - I had great success with Penguin caps with TC. Just make sure your follow the times and temperatures precisely! Here I am 6 months PFC

    image

  • phaila
    phaila Member Posts: 177
    edited March 2016

    do any of you have photos of how you transport your cold caps and any advice on storing them the night before and using dry ice???

  • Ruddycat
    Ruddycat Member Posts: 13
    edited March 2016

    Suzted7 - I feel pretty certain that if I put all the hair I lost after washing on Monday (in the 3rd photo) into 1 pile it would look about like yours and my hair isn't even shoulder length - it's MUCH shorter than yours. Is the pic you posted of your hair BEFORE you started? Surely so because I don't see any thinning at all. I wonder if maybe the sheer weight of your hair and the tension it puts on your roots might have something to do with why the cold caps don't seem to be working as well? Or maybe because it's so thick and wavy that your scalp isn't getting cold enough? You have a lot of nice hair and I can see why you'd want to save it! I'm so sorry that it hasn't worked out like you'd hoped. I guess the jury's still out on whether it's working for me.

    Wildflower2 - Thanks for the encouraging words! We'll see what happens when I wash it today. And I agree with your dermatologist - I think that washing just removes whatever was going to eventually come out anyway - it's just scary to see so much at once!

    Phalia - I'd say the most important thing to consider when deciding whether to do cold caps is whether or not you have someone that can totally commit to managing/changing the caps for you on chemo day. It is an exhausting, all-day exercise that has to be executed pretty precisely. Getting the ice, packing the coolers, checking the temps, fitting the caps, repacking the caps - repeat, repeat, repeat . . . I hope you have someone ready to do this for you and if so, I say go for it!

    Scarlett152 - You look beautiful and no one would EVER know you'd just been through chemo!


  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited March 2016

    Scarlett,

    You look so healthy and pretty! And your hair looks great! Full with lots of body. Would you consider posting your photos on the thread Cold Caps Success Stories - https://community.breastcancer.org/forum/6/topics/...

    That's a sweet looking pup you have there!

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited March 2016

    Thank you wildflower for helping me get more pics on that thread!

  • Mypinklife
    Mypinklife Member Posts: 18
    edited March 2016

    Hi ladies, just wanted to share this picture to hopefully provide some motivation! Gearing up for round 3 of TCHP on Thursday, had one big shed and now just normal shedding!image

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited March 2016

    wow, mypinklife, you look great!

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    Looking great Scarlett and MyPinkLife! Thanks for the motivation! I just finished #3 Taxol...no shedding yet...but fearing loosing hair on the front sides b/c it seems like I'm not getting full coverage there from the caps. Not enough to use the headbands, although I do have those...they just seem to thick for the area that isn't getting coverage and I'm concerned about frostbite.

  • phaila
    phaila Member Posts: 177
    edited March 2016

    I'm so encouraged by your photos:) you all look amazing and I'm so happy for all of you. It's like the one way to have a little bit of control over your destiny when cancer and doctors are controlling everything else in your life

    I'm ordering them this weekend. Very curious how you all handle the dry ice and storage day of and night before.

    I haven't had a chance to watch all videos and read all text. I've been overwhelmed with traveling for second opinions and appointments all week. If anyone is using it could you please post some pics of how you transport the caps and how much dry ice you buy and when you buy it. It's all so much information to digest:(((


    Thank you

    Vicki

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