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ohionana1605
ohionana1605 Member Posts: 67

I was just on the zoom call and I wanted to ask why most everyone has hair. Lori was only one who mentioned losing hair. Mine was falling out byhandfull so we just shaved it short. Thank

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
    edited August 2021
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    Ohio nana,

    Good to see you! Because I was dx’ed 10 years ago (no Ibrance , verzenio, etc. back then) and have never had chemo, I’ve managed to keep my hair. I have been on all of the AI’s over the years. My hair may have thinned a bit, hard to tell with my crazy curls, but that could be aging too. Take care.

  • Loriwithgod
    Loriwithgod Member Posts: 7
    edited August 2021
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    Ohionana. I lost my hair 5 years ago when I was undergoing chemo for stage 1 breast cancer. It has grown back and I have not lost any since then ...except...now on Verzenio for 10 months I am just now starting to experience a bit of thinning. Nothing to write home about ...yet....

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    I wasn't there this week but I'm bald. People who can take meds like hormone blockers, cdk4/6 inhibitors and some ADC class drugs to control their cancer usually don't lose hair.

    Most chemos used for breast cancer cause hair loss but not everyone needs IV chemo at the beginning. (Eventually, everyone does.... )

  • kbl
    kbl Member Posts: 2,739
    edited August 2021
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    Ohionana, I’m sorry I wasn’t able to stay on the call. My Internet kept cutting in and out. I was diagnosed occult de novo metastatic. They’ve never found the cancer in my breast, and it spread to all my bones, bone marrow, and stomach before it was ever diagnosed. I went straight onto Ibrance and Letrozole because I am ER+, PR+, HER2-, and chemo will be the last resort for me. That’s why I’ve never lost my hair

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
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    I've been on breast cancer treatment for ten years. I have had normal hair, no hair, thin hair, and -- the latest -- thick and abnormally curly hair. I have supplies for any situation: Wigs, hairpieces and fake buns, scarves/bandanas/caps, Toppix (shake-on hair fibers). And the number of a good stylist who can make the best of whatever my hair is doing. So I am prepared for any kind of hair or lack of hair. I consider hair an ever-changing thing in the stage iv life.

  • illimae
    illimae Member Posts: 5,608
    edited August 2021
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    I had to jump off the call early my I lost my hair during my initial IV chemo in early 2017 (pic below). The medications I continued on don’t cause hair loss just slow growth and some thinning, which is why I keep it short, that and I’ve always preferred it no longer than chin length.

    I had a lot of fun being bald but short is good too.

    image

  • kbl
    kbl Member Posts: 2,739
    edited August 2021
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    Mae, I have always loved your sense of humor. Love the pic. Hug

  • nopink2019
    nopink2019 Member Posts: 384
    edited August 2021
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    I lost my hair in 2008 during ACT. Then again in 2019 after my 1 round of taxotere (had to quit due to developing drop foot). Grew back but started thinning on kisqali/fluvestrant. Biotin has helped, now it's thick again. Straight hair for 65 yrs, now it's been curly for 2 yrs. Weird, but it's short & easy.

  • illimae
    illimae Member Posts: 5,608
    edited August 2021
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    Just wanted to add the Herceptin can slow hair growth too and may increase the delay after chemo. The pic below is about 8 months after my final abraxane infusion and it’s not much to show for such a long time but it will grow eventually.

    image

  • a-friend
    a-friend Member Posts: 10
    edited August 2021
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    Mae, You actually look great with short hair



  • illimae
    illimae Member Posts: 5,608
    edited August 2021
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    a friend, thank you. I love short hair. Most of my life it’s been a bob cut but once I grew it just past my shoulders and I absolutely hated it, so that didn’t last long at all, lol

  • lkgski
    lkgski Member Posts: 2
    edited November 2021
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    Hi All,

    I hope all are well!!! I'm new to this MBC community forum, but I've been living with it for 10 years. I changed my medication protocol to Verzenio/Fulvestrant a year ago and all of a sudden, my hair started thinning rapidly and my nails chip, peel, and crack easily. I know hair thinning is a side effect of Verzenio, probably Fulvestrant as well. My dermatologist recommended oral minoxidil and a hairmax product for my thinning hair, and biotin and Sally Hansen Hard as Nails for my nails. I have low blood pressure, so not sure I'll be able to take the minoxidil. Has anyone had similar issues with this medication protocol and what treatment(s) did you use that have been effective? Hairmax website says their products are for hereditary hair loss, so not sure this would work for hair thinning caused by medication? Also, I read on breast cancer.org website that taking biotin can effect some lab tests? I'm in the Raleigh, NC area and would love to meet other MBCeer's!!! God bless!!!

  • seeq
    seeq Member Posts: 1,099
    edited November 2021
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    I lost about 2/3 of my hair on Verzenio (150x2)/Anastrozole. I reduced the Verzenio to 100x2 (for other SEs) and I think, maybe, my hair could be getting thicker again. It's too soon to tell, but I definitely don't have as much in my brush or showerr drain!

    There's a recently active thread, called Thinning Hair, where some ladies are using Hairmax and trying some other solutions that you might find interesting.

    https://community.breastcancer.org/forum/6/topics/841787?page=14#idx_396

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021
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    illimae - Hi again! Did the Xeloda cause any hair thinning for you?

    I love your pics above. I've seen them before and I think I recall mentioning on another thread that I looked like Uncle Fester. You rocked it, I did not (at least I don't think I did) and I wasn't courageous enough to take any pics.

  • amontro
    amontro Member Posts: 184
    edited December 2021
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    Hair's my story.

    Over 13 years ago denovo, I started on herceptin and arimidex. I was told at that time to get my affairs in order, take any vacations soon, and buy a wig. My affairs have been in order for many years, I've been on great vacations (COVID put a stop to that), and the wig I originally bought is in a box gathering dust.

    Like Shetland, I have amassed a collection of wigs and hairpieces (in case of emergency) over the years. My hair has always been hard to grow, breaking off easily and getting thin, and now I think it's more from ageing. I'm not sure what l'd do in the summer. I get hot flashes and I'm a beach bum (head stays above water, though).

    By the way, I'm still on herceptin infusions every three week, and arimidex pill daily after all these years..

    Thanks for this thread. I've never discussed this before,

  • nopink2019
    nopink2019 Member Posts: 384
    edited December 2021
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    I think biotin helped my thinning hair from Kisqali/fluvestrant. PCP said to stop it 2 weeks before blood work so thyroid levels would be accurate. MO told me to give it a try and it worked. I'm on to Xeloda now and will see how hair goes without biotin.

  • serendipity09
    serendipity09 Member Posts: 769
    edited December 2021
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    Nopink2019 - were you told not to take biotin while on Xeloda?

  • cowgal
    cowgal Member Posts: 625
    edited January 2022
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    I have two wigs that I got when I was doing Taxol in October - December 2019. They are both synthetic and I purchased them from the TLC catalog. I wore one of them 1 day and the other for about a week. I really did not like wearing wigs and they are both back in their box in my closet. I was lucky that my hair came back thick enough to have a style. Being stage 4, I realize that my treatments may change at any given time and my hair may fall out again and there may be a reason I need to wear a wig for an event so I have kept them. Lately, I have been wondering if synthetic wigs degrade whether worn or not as I assume that the fibers, elastic or whatever else makes up a wig would breakdown. If they only are good for example five years, I have thought that maybe I should donate them so that someone else can use them now. Does anyone know what the lifespan of a synthetic wig that is not being worn all of the time would be?

  • illimae
    illimae Member Posts: 5,608
    edited January 2022
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    serendipity, I’m sorry I’m just now seeing this but no, I haven’t noticed any thinking with Xeloda. If there is, it’s not enough for me to see it. I’ve always had thin and fine hair and it’s grown back very similar to before chemo, except with a bit more golden/red tones. I do rock a combover for extra volume but I don’t think anyone can tell. Here’s what it currently looks like.

    image

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2022
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    serendipity, no my MO knew I was taking biotin and didn't tell me to stop. I just decided to stop &see if my hair thinned from. X.

  • divinemrsm
    divinemrsm Member Posts: 6,089
    edited January 2022
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    I also have a hairstory to share.

    After diagnosis, I had six rounds of chemo. My hair fell out within about three weeks after the first infusion in February 2011. Chemo ended that June. You can see in the following photo diary that by August it was starting to grow back. My hair has always been very straight and grew back that way; I didn't get the chemo curls like many do. I had a fantastic wig purchased for $90 that looked so real most people had no clue it was fake. We were taking lots of photos during those months to commemorate ds's last year of high school, and I was glad I could pass as “not sick looking". I was more than happy to ditch the wig when there was a minimum of hair growth.


    image


    Then for a number of years I took Arimidex and it was as if I'd never lost my hair—with the exception that my eyelashes and eyebrows never, ever came back like they used to be. They remain very sparse. I did use the prescription med to grow back eyebrows, forget what it's called, and it worked great, but was pricy and after awhile I didn't care to be bothered with it. I'm fine using eyeliner and eyebrow pencil. I do have eyebrow envy and notice the really nice ones on people!

    In 2019 I ended up on Ibrance and then Verzenio for a year. My hair grew very thin and practically stopped growing.

    Now I've been on Xeloda for almost two years and my hair is pretty much normal. It may not be completely the same as it was before, but I feel that is due to being in my sixties now and attribute minor changes to aging and not the meds. This is my profile picture taken in 2021. I've been cutting and coloring my own hair for about three years. This chin length seems to work best for me.


    image






  • illimae
    illimae Member Posts: 5,608
    edited January 2022
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    Divine, short hair really suits you

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    illimae and Divine - thank you! My hair seems to be shedding quite a bit on Xeloda. Nothing noticeable to anyone else, but it's all over the place.

    You both look amazing.

    illimae - love love the color.

    Mine came back darker, but thick and curly like as it was before. It's currently reaching to about my shoulders. I started shedding during rads, but I think it was the stress as it stopped after I finished. I noticed it started shedding again when I started X. I'm just finishing my third cycle and it's everywhere, I don't even want to touch it.

    Divine - the cut and color look great on you! Love that you have pictures to mark the milestones per se. I couldn't look at myself without a wig or head cover let alone take pictures. I looked like Uncle Fester, lol.

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2022
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    Serendipity,

    I, too, have had lots of hair shedding on xeloda. I raised it on here, but no one else but one person seemed to have any reaction to it. Like you, for a good amount of time I was afraid to touch my head because hair would come out. I ended up using my hair dryer on low setting and not even combing it. But now it's pretty much stopped shedding, so hopefully that will happen to you as well. It was 4-5 months of shedding though.

    Divine, I love your hair. I wish I had the skill to color and cut mine like you do! And Mae, yours looks great too.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    BevJen - thank you. I washed it this afternoon and my comb was filled, I started crying. Again no one can tell except for me. Losing my hair when I first started treatment was so traumatic for me, as it is for many others. I just want it to stop. I'm going to not comb it after I wash it and blow dry it like that.

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2022
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    Serendipity,

    I can so relate -- the loss of my hair during my first chemo treatments was very hard for me, too. I was so ticked with my oncologist because she said zippo about this possibly happening. When I mentioned it to her, she said -- oh, yeah, that does happen sometimes. So why didn't she tell me? I'm not a psychic.

    Seriously, the less you can touch it, the better. There are also some shampoos on Amazon that you can order for thinning hair. I bought one that my hairdresser recommended, but honestly, it was very expensive, and I think it just slowed down on its own. But that's another possibility. That was upsetting me, too, though, because when you shampoo, hair comes out.

    Good luck. You aren't the only one.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Thank you BevJen! My MO told me the day I met her, which was the day before my first AC, that by day 14/15 my hair would begin to fall out. I tried to prepare myself for it emotionally...yea right!

    I think you are right in that my shedding will resolve itself. I'll just have to be patient.

  • emac877
    emac877 Member Posts: 688
    edited January 2022
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    I happened on this thread and it's helpful to know I'm not alone. I lost all my hair when I was first diagnosed stage II after four rounds of T/C in 2018. It was coming back but so did my cancer at the end of 2019. I was put on Faslodex/Verzenio in January of 2020 and since then I have noticed significant thinning, mostly at the top. It's been an ongoing source of struggle and embarrassment for me. I had thick curly hair before cancer and I got some of the curl back on the sides and in the back but the top has only a slight wave and is very brittle and frizzy. Thanks for the thread links. I am always researching what else I can do. It seems vain but I think the hair has been harder to deal with than the pain and fatigue for me. I thought about Minoxidil but don't want to have to put it on my head forever and I was worried it would damage the hair I do have. I take the supplement Hair, Skin and nails but have not noticed much in the way of improvement. I think if I cry over anything regarding my cancer it's my hair. Then I feel silly for crying over such a vain thing. I don't know what the answer is for me. I'm crying as I type this which seems silly. It's just the one thing in the storm of everything else that just seems to be hard to get used to.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    emac877 - I don't think it's silly at all. I cry about my hair. It's not vain and anyone who has gone/or is going through cancer treatment can relate. Some will tell you that they are ok with having lost their hair if it means the cancer is being treated or "gone" (NEAD), and that's ok for them. Some are ok with having no hair and really embrace and rock the look. I could not rock the look,I looked sick and I felt ugly. I will do whatever necessary to get rid of the beast, but it does not mean I have to be ok with losing my hair. Feel what you have to feel and cry when you feel like crying. It's ok, you are not alone. {Hugs}

  • cowgal
    cowgal Member Posts: 625
    edited January 2022
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    I completely understand the hair thing. When mine all fell out, it was the feeling that everyone else knew I was a cancer patient. It kind of steals our individuality and it let's everyone know we are sick. The hope is that when it comes back that #1 it comes back and #2 that it comes back as least as good as what it was when we lost it! My hair was medium-dark brown with some gray and was curly (2C/3A). When my hair fell out and the tiny amount of stubble was cut, my hair was straight and white. When my hair came back, it started out as white and gray and definitely had wave but then it darkened up to a little darker than my original hair and it is curlier all over especially in the back (3C) and probably 3B in the front and top. I would say that it is a little bit thinner and finer now than prior but not a lot. I am just over 2 years out from chemo so I assume whatever I have now is what I have and I am okay with it and feel lucky. I would say that it has been an adjustment trying to style my new hair since it is a little bit different.

    I did use the Nioxin System 1 when I was trying to get my hair to come back after chemo. I can't remember if it is the conditioner or the spray in stuff or both that contain parabens but I asked my MO before using them and he said he was fine with me using them and had several other ladies that had used it to get there hair going after chemo. He said he was more worried about what I ingested than what I was putting in my hair so he was not concerned about parabens. After stopping the use of Nioxin, I don't have any more of the shampoo left but I had one bottle of the conditioner and one bottle of the spray in stuff that are new and never opened. If someone would like those, please let me know. I would be happy to send them to someone who can use them.