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Cold Caps Users Past and Present, to Save Hair

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Comments

  • lowcountrygirl
    lowcountrygirl Member Posts: 26
    edited May 2017

    I am such a wimp. I finished 4 rounds of TC last Friday and have been the poster child for rare side effects. Ended up in the ER after round three bleeding out of my bottom. I feel dizzy, numb and gross all the time. I wanted to be the "chemo no big deal" girl and instead it has dropped me flat. I'm jealous of you ladies!

    What do you all consider PFC? Last day of chemo or three weeks after? I used Dignicap and lost more than half my hair including everything on top. I just want to make sure I do everything right to help it grow back. I have all the right shampoos...just worried about timing. I have gray troll hair and a massive bald spot. Insult to injury. Not even enough hair to hang on to a topper. Welcome to my pity party

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited May 2017

    hi everyone, so I had my hair dyed today at the salon with ammonia free semi permanent dye to my natural dark brown color. I also got a trim. I'm 10 weeks PFC and I know I was supposed to wait longer but I just couldn't. The greys made me feel depressed. My hair is still super thin. I don't even feel comfortable wearing it down so I pin it up with this tiny butterfly clip. I was going to go for the pixie cut but decided to let the top of my hair fill in a bit more. But having no grey hair makes a huge difference

  • Luvmyys
    Luvmyys Member Posts: 67
    edited May 2017

    Low - oh girl.. we have all been there with one sort of SE or another. You are doing great, you got through it. My PFC was immediate I didn't start counting the timeline from what would have been my next chemo. I felt the worse emotionally in the 5 weeks following my PFC, felt my ugliest. Like I've said, when I thought it couldn't get worse, it got better. I saw growth or maybe just got used to it. I am 3 months PFC, I have 1-2-3-4 inches along over my head of new growth. I used Viviscal and felt it helped. I am still unhappy with the way my hair looks but I have hope. Is also used Latisse and after all lashes and brows fell out I used it every night and I posted my lashes this week if you look back. They are longer and fuller then they have ever been.

    It will require patience... but congratulations you've comethrough it fighting.

    Hopefull - how is your pixie cut? I bet it looks adorable.

    Catgirl - How are you? Give us an update!

    Runner - How do you like the Keratin treatment? So jealous!

    Pamela - How are your lashes and brows doing? Have you colored yet?

    I have a black tie event this weekend.. Went to get a dress and with boy hair you have to have a certain dress. Frilly is not a look to consider. I went with long black, high collar, edgy... we will see..

    Happy hair ladies!

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Thanks so much Elastogelgirl, I sent you a PM back.

    Hey Ladies! I'm 4.5 weeks post bilateral revision mastectomies and bilateral DIEP reconstruction for a 3rd recurrance of breast cancer after my original surgeon apparently did not perform complete mastectomies 6 years ago. Hoping to join you ladies in cold capping to prevent hair loss with chemo which I will be due to start by the end of May.

    I've been reading all your posts and really appreciate your insights and recommedations. Looking forward to getting to know you all.

    Irish


  • Hopfull2
    Hopfull2 Member Posts: 287
    edited May 2017

    hi luvmys, I didn't end up getting the pixie. I'm gonna wait for my hair to fill in on too because I have a lot of baby hairs from the re growth so will wait for them to get a bit longer. But it least I found a new way to wear my hair. Up in a little tiny twist with this tiny butterfly clip I found. It's the only thing that will hold my thin hair up.

  • Pamela23
    Pamela23 Member Posts: 394
    edited May 2017

    Lowcountry--I had the same regimen. I felt like #3 kicked my ass but you win the prize for rare side effect! What did they say the bleeding was from? I'm so glad you are finished, so you are 1 week PFC. I agree with luvmyys, about 5 weeks out you lose the rest of your facial hair and probably look your worst. I needed an extra 20 min getting ready to go places to draw/spray everything on to look "normal". But 5 weeks after that, my brows look great and my lashes are filled in and about half the length of being normal. Just be patient with yourself and hope all the bad SE's are behind you.

    Hopfull--I didn;t realize you were a whole 6 weeks behind me. I'm ready to color my hair, just waiting for the vegetable based hair dye to come in the mail. Are you saying you just did a semi permanent ammonia free one? I really need a trim just to have the look of thickening a bit. Mines so scraggly even if I run an appliance through it, the next day it's a nest again. Been doing some deep conditioners in the shower but I really lack the shine.

    Irish Luck--good luck on your journey. We are hear if you need us!!


  • lowcountrygirl
    lowcountrygirl Member Posts: 26
    edited May 2017

    Pamela23...ischemic colitis was the verdict. A type of intestinal tearing was how is was explained. By the time I decided the ER was my only way out I couldn't bend past 90 degrees at the waist from intestinal cramping. 7 hours of fluids and pain killers later I was finally flattened back out. I was down for 5 days.

    I'd better start practicing my eyebrow drawing now if the worst is still to come. I have three daughters in college so maybe I can get a little help. Thanks to you and Luvmyys for the heads up.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited May 2017

    amapola, congrats. Yay. Your done. And I too lost about 50% of my hair too. I can't even. Wear it down anymore it's so ugly and thin. I colored yesterday at 10weeks PFC nothing crazy no highlights just my natural color. So good luck to you and congrats.

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Congratulations Amapola!!!!! I'm so sorry you and your friends had to go though this at such a young age. Life is really not fair somtimes. I do hope they find a cure soon. So happy that you made it through and I hope it is smoothe sailing for you from here on out.


  • Mquara
    Mquara Member Posts: 56
    edited May 2017

    "May 2, 2017 07:16PM LowcountryGirl wrote:

    I am such a wimp. I finished 4 rounds of TC last Friday and have been the poster child for rare side effects. Ended up in the ER after round three bleeding out of my bottom. I feel dizzy, numb and gross all the time. I wanted to be the "chemo no big deal" girl and instead it has dropped me flat. I'm jealous of you ladies!

    What do you all consider PFC? Last day of chemo or three weeks after? I used Dignicap and lost more than half my hair including everything on top. I just want to make sure I do everything right to help it grow back. I have all the right shampoos...just worried about timing. I have gray troll hair and a massive bald spot. Insult to injury. Not even enough hair to hang on to a topper. Welcome to my pity party"


    I've been thinking PFC was post first chemo. Does it mean post final chemo? LOL

    @

    Week one I have extreme exhaustion, week 2 is horrible diarrhea (I had nausea and some vomiting this second cycle too) to the point where I just can't go anywhere :( and week 3 so far sucks too both times. Oh and my toe nails are on fire! Other than that, and bald spots that run from ear to ear over the top of my head :(, I'm doing "ok". I'd just like to have a few days, when I feel great. And I NEVER feel good on a clean hair day either - so frustrating :)

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.


    My Oncologist mentioned Docetaxel and Cyclosphamide as a possible chemo regimen for me. I don't want to take the Docetaxel because of the possibility of permanent hair loss. I've heard that Paclitaxel is the natural non synthetic alternative that does not cause permanent hair loss. Anyone have any insight into this or know what the best chemotherapy options are for combatting breast ER+, PR+, HER- breast cancer without having to deal with permanent or severe hair loss?

    Thanks

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.


    My Oncologist mentioned Docetaxel and Cyclosphamide as a possible chemo regimen for me. I don't want to take the Docetaxel because of the possibility of permanent hair loss. I've heard that Paclitaxel is the natural non synthetic alternative that does not cause permanent hair loss. Anyone have any insight into this or know what the best chemotherapy options are for combatting breast ER+, PR+, HER- breast cancer without having to deal with permanent or severe hair loss?

    Thanks

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.


    My Oncologist mentioned Docetaxel and Cyclosphamide as a possible chemo regimen for me. I don't want to take the Docetaxel because of the possibility of permanent hair loss. I've heard that Paclitaxel is the natural non synthetic alternative that does not cause permanent hair loss. Anyone have any insight into this or know what the best chemotherapy options are for combatting breast ER+, PR+, HER- breast cancer without having to deal with permanent or severe hair loss?

    Thanks

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.


    My Oncologist mentioned Docetaxel and Cyclosphamide as a possible chemo regimen for me. I don't want to take the Docetaxel because of the possibility of permanent hair loss. I've heard that Paclitaxel is the natural non synthetic alternative that does not cause permanent hair loss. Anyone have any insight into this or know what the best chemotherapy options are for combatting breast ER+, PR+, HER- breast cancer without having to deal with permanent or severe hair loss?

    Thanks

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Lowcountry I'm so sorry to hear about ischemic colitis. I hope your ongoing treatment will be easier for you. LOL on the eyebrow thing. I'm really worried about how bad I will look without eyebrows. I'm thinking of having a temporary tattoo done if I can manage the cost and scheduling of it before chemo. I saw them online and they look awesome.


    My Oncologist mentioned Docetaxel and Cyclosphamide as a possible chemo regimen for me. I don't want to take the Docetaxel because of the possibility of permanent hair loss. I've heard that Paclitaxel is the natural non synthetic alternative that does not cause permanent hair loss. Anyone have any insight into this or know what the best chemotherapy options are for combatting breast ER+, PR+, HER- breast cancer without having to deal with permanent or severe hair loss?

    Thanks

  • IrishLuck
    IrishLuck Member Posts: 33
    edited May 2017

    Whoa, sorry about all the deleted posts. I kept getting an error message when trying to post, so I kept trying and it ended up putting the same post about 6 times. LOL!

  • lowcountrygirl
    lowcountrygirl Member Posts: 26
    edited May 2017

    mquara...I was great for the two days after because I was jacked up on the steroids. I tried to cram everything in before the Mack truck came peeling around the corner on day three.

    I avoided hand and feet burning by having my hubby ace bandage packs of frozen peas to my hands and feet during the Taxotere. Combined with the Dignicap it was torture but it eliminated burning and tingling in my hands and feet. My reflux and burping continues to be legendary

    I find my biggest sheds come 14-21 days after each round so I am still planning on losing more hair for a couple more weeks. I can't go out without a head cover but I'm not wearing a wig. I look like gollum.

    I'm hoping for sprouts by months end....

  • Pamela23
    Pamela23 Member Posts: 394
    edited May 2017

    Congrats Amapola!! So happy you are seeing the light at the end of the tunnel! What an amazing group to have. I didn't feel a connection at my Cancer Center. I really relied on these forums to get me through. I felt I was the youngest one I'd see and I'm in my mid 40s. It's great they offer such a group.

  • Radmonkey
    Radmonkey Member Posts: 38
    edited May 2017

    Hi Everyone! I'm starting chemo the week of May 22. AC (4) + T (4). My oncologist says this chemo regiment is the least successful with cold caps, but I'm reading some success and I'm hopeful it will work! Any shout outs from ACT chemo with cold caps success? I would LOVE to hear them.

    Sherry! Glad to see you on this board! I messaged you on Instagram!

    I'm getting my penguin cold caps next week. Crossing my fingers.

  • rdsm
    rdsm Member Posts: 37
    edited May 2017

    I am starting chemo on May 15th. This will be my second time going thru chemo. The first time was back in 1999. I lost all of my hair and it was horrible. This time around, I'd like to try using the Cold Caps. I'm going to be having taxotere and cytoxan. Would love to connect with anyone who has experience.

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited May 2017

    Radmonkey and rdsm, welcome to the Cold Cap group! Be sure to check out the posts here as there is a ton of information already available to you and we have our chemo treatments for you to review as well.

    I am using Penguin Cold Caps right now, finished DD AC and 2 rounds of Taxol so far, with 10 more weekly to go. A is definitely tough on the hair, but there are a few of us that have had success with cold capping and that chemo drug. Doing the Taxol weekly may have less averse effect on my hair from what I have read, we shall see. I have probably lost about 15 %- 20% of my hair so far and anticipate a total loss of about 50% based on what has happened with others. My hair looks thinner but it is still passable in public and even my MO is stunned by the results so far. Her partner stopped by last infusion as he had heard it was working and just wanted to see how things were going. We are mavericks in some of these infusion centers - or Rock Stars. . . . :) One tip is to do a practice run on cold capping and have everything ready a few days in advance. Some dry ice companies will offer discounts to cold cappers so be sure to ask. I get mine the night before and follow the chart of when to put the caps in exactly. Bought a laser thermometer at a Big Box store to measure the caps temps vs. what was supplied which did not work well. The temp is important so try to get that straightened out ahead of time.

    Be sure to compare the cold caps success rates as they do differ if you have not decided on a brand yet. Rapunzel Project has a chart you look at and each company has their statistics on their website.

    I am looking forward to hearing about your success with the caps! Feel free to PM me if you have questions.


    Anne

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited May 2017

    Hi rdsm - I had TC in Fall 2015 using cold caps. My hair thinned but I kept my hair for the most part. I knew it was thinner but I don't think anyone else really noticed. Now - 1 1/2 years after my last treatment, my hair is completing back. I never had to wear a wig which made me happy. Cancer is hard enough to deal with without losing your hair. I wish you the best! Hope it works for you. BTW - I had fairly thin hair to begin with.

  • Pamela23
    Pamela23 Member Posts: 394
    edited May 2017

    Radmonkey and rdsm--I'm sorry you're facing chemo but so happy you found this group. Everyone is so helpful and it's nice to have people going through it at the same time you are and not just us veterans. This forum has been a lifeline throughout the hair saving process!! Just to warn you--you'll be overwhelmed and anxious about it until the first chemo and then you'll see the chemo itself is non eventful and by the end of that day, you'll be a pro.

    rdsm--I had TC (4 rounds). I used Penguin Cold Caps if you have any questions. I lost probably 45% of my hair. Mostly all over but I did lose my sides close to my face underneath. I posted pics on earlier pages. I'm about 3.5 months PFC and my hair growing in is about an inch long. Still waiting to trim and color it.

    Suzanne--how long is your hair?

    Hopfull--Been thinking about you--have you got your period back yet?

  • MichCali
    MichCali Member Posts: 44
    edited May 2017

    Hi Everyone,

    Welcome to new group me.

    rdsm--I also had TC- 4 rounds. I used penguin cold caps. My hair thinned a lot, I'm not sure how much I lost--maybe 40%. I lost the most on the sides above my ears. It also has become frizzy . But after finishing all my chemo, if you didn't know me, you would just think I have thin hair. I'm 6 weeks PFC and starting to see small hairs growing back.

    Has anyone tried Madison Reed root cover up? Or Madison reed hair color products? Someone told me they might be ok to use. I need to check the ingredients. I cant wait until I'm able to color my hair again.

    I hope everyone has a nice weekend!!


  • Hopfull2
    Hopfull2 Member Posts: 287
    edited May 2017

    Hi rdsm, welcome to the cold capping world. I also had TC 6 rounds. I lost 50% of my hair. No bald spots but extremely thinned now. I'm 10 weeks PFC and I do have regrowth. I also lost my lashes about 3 weeks after I was done with chemo. Your results will more than likely be better because you are doing 4 rounds. Good luck with the caps. Just make sure you get toppik and something to take your hair because it might get frizzy.

    Hi Pamela, no period yet. I'm on my 2nd bottle of tamoxifen so that doesn't help with me trying to get my period back. I'm having surgery on June 9th prophylactic mastectomy and reconstruction so my journey is not over yet. My lashes are starting to grow back but not enough to put mascara on yet. I just wear black eyeliner on my top lids so I don't look weird. Have you started tamoxifen? And do you have your period?

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited May 2017

    Pamela23 - My hair is shoulder length. I took Biotin twice a day (still taking) and it has really made a difference. I think my hair is thicker now than before chemo.

    I didn't color my hair till about 4 months after last chemo. Even then, my hairdresser used a very gentle color. It has really taken me to this point - April 2017 - to feel that my hair is back to normal. But the penguin caps were great - definitely worth the aggravation of them and the brain freeze.

  • Pamela23
    Pamela23 Member Posts: 394
    edited May 2017

    MichCali--I used WOW powder from Ulta which I loved until my grays got longer, then I switched to L'Oreal spray. I like the powder so much more because it didn't make my hair stiff like the spray and it stayed in longer. I feel I touch up everyday w/ the spray which causes build up. I found this week that if I sprayed some dried shampoo on it when it was feeling stiff, it'd take the stiffness out of it.

    Hopfull--I am not on tamoxifen yet. During my last week of radiation I went to the GYN to get a pap and asked her to take a sonogram of my uterus for a baseline of my uterine lining before tamoxifen possibly changes it. She found a polyp that I'll have removed on the 15th. My MO agreed not to start until after the procedure. I'll wait a couple week to heal even though my MO said I could start the next day but my school of thought is, if the lining is working hard to heal, why would I tale a med that effects the lining of my uterus? I'm all about healing before something else is introduced that will have side effects. Anyway, no period yet but for 2 days this week I had tenderness around my right ovary. It felt like when I'd feel that during ovulation sometimes. I'll be curious if I get it but the procedure causes bleeding so I wonder if it came during healing, I'd even notice.

    Suzanne--My hair is past my shoulders. I have a feeling it'll be a couple years before my sides get to that length. I just miss the thickness of it.


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