Cmf and hair loss

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I just finished my 2nd treatment. 6 more to go. I go every 2 weeks. When did you start loosing hair? Did anyone not notice hair loss? I was told it would be thinning.

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  • Jrunstroop
    Jrunstroop Member Posts: 12
    edited December 2019

    ihatethis2019 I started losing after the second cmf treatment. I’m 4 in and have been thinning a lot (my hair is EVERYWHERE!) but some people have said their loss is minimal.

  • Fukcancer
    Fukcancer Member Posts: 32
    edited December 2019

    I lost 85% of my hair from CMF. I was one of the unlucky ones. But it started to grow back before I finished treatment. I’m about 8 months PFT and I have about 4 inches of hair. I got hair extensions in October when my hair was about 3 inches long and it has helped my self-esteem tremendously.

  • Ihatethis2019
    Ihatethis2019 Member Posts: 6
    edited December 2019

    Thank you for your reply. Did you use the Cold Cap? I am using it. But i havent received any feed back from people who are on CMF and are using the coldcap. I guess because they say you dont loose your hair it only thins out.

  • Ihatethis2019
    Ihatethis2019 Member Posts: 6
    edited December 2019

    Thank you for your reply. Did you use the Cold Cap? I am using it. But i havent received any feed back from people who are on CMF and are using the coldcap. I guess because they say you dont loose your hair it only thins out.

  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019
    Hi, I just posted at CMF treatment survivors and experiences than saw this. I'm losing a ton of hair this week. I am 4 days post treatment 2. Hate that. I have a ton of thick long hair to lose, so it really looks like a lot. I read if you have thick fast growing hair you will lose more. I really lost a lot and it's only second treatment. Will I continue to lose more each time? or will it stop? Not looking too good right now if I'm losing this much now. I usually wear it in a ponytail, I have a wig if necessary. But the wig won't stay my head, it's cute but really annoying. I just can't picture wearing it, I'm a comfort kind of person, but also can't deal with no hair.
  • Fukcancer
    Fukcancer Member Posts: 32
    edited December 2019

    I didn't cold cap. I actually couldn't because I was taking the classic CMF with the cytoxan pill for two weeks so cold capping would have been impossible.

    I have thick fast growing hair so maybe that's why I lost so much. I lost at least half of my hair about two weeks after my first treatment. It continued to shed throughout my treatments, but obviously there was less to lose as treatments went on.

    Try a wig cap. I did not cut my hair until after treatment was over. I had a beautiful human hair wig and tucked my real hair under a wig cap. The wig felt very secure with this method

  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    I had a really bad day yesterday Hair kept coming out and really upset me. Still shedding today Can’t deal was hoping this was the advantage to cmf

    Ihatethis2019 . Looks like we are on the same schedule. I had 2nd treatment 12/16. Two kids 12 and 14. seems like thick hair people lose more than thin.

    Fukcancer. I think it just makes me feel weird because I wear my hair in ponytail every day it’s just not me. It annoys me.

    Jrubstroop looks like we’re losing similar. Can you still go without a wig or hat

  • Fukcancer
    Fukcancer Member Posts: 32
    edited December 2019

    JRNJ, I am so sorry that you are losing so much hair :( I remember how devastated I was when I started to lose mine too. I wore a wig constantly. I didn’t want to wear my disease on my sleeve.

    The only thing that helped me through it was knowing that my hair would grow back 100%. My doctors originally pushed me to do TC, but after talking to several women who had permanent hair loss from Taxotere, I found a different doctor that was willing to give me CMF.

    I didn’t lose my eyebrows and eyelashes completely. They thinned, but i kept enough to be manageable

  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    Fukcancer, thanks for the support. Did you go to Sloan? They are big CMF supporters and most of the people on CMF appear to be in NY, NJ, PA or CA. It's itchy and at this point I don't know whether to brush it or not to feel better. I don't know if brushing it is making it worse, or it's just going to come out anyway.

  • pajim
    pajim Member Posts: 2,785
    edited December 2019

    Hi Ladies, I hope you won't mind if I join you. I start CMF today and have not much idea what to expect. Normally they give the Stage IV ladies a lower dose but I don't think that's going to happen here. I'll know much more in 12 hours.

    My MO said "hair thinning". Which is what he said when I started Halaven last January. And it's true for most people. Three weeks later it all fell out in one day, LOL. Of course it wasn't funny at the time because I was at work. . .found a baseball cap to keep me sane until I could figure out what to do.

    But it grew back. Of course this time I'm much more grey but them's the breaks.

  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited December 2019

    I had CMF 29 years ago - hair thinned considerably but no need for wig. Never really gre back so now having thinning hair on Ibrance/Letrozole. Most noticeable area is above forehead. Hard to hide.

  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    Goldensrbest ugh thats sad I’m sorry. I thought that wasn’t supposed to happen on cmf. If you don’t mind me asking when did you have mastectomy and radiation and start tamoxifen?

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2019

    I’m currently on ibrance/letrozole. I don’t have much hair left, anywhere. So I wear this. Gotta find some humor somewhere. image

  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    lol. I know there are more important things to worry about but the hair loss really bothers me. Ironically I always hated my thick course hair. But I hate my face without it more. And I hate the wig. I’m hands on house project kind of girl with hair in ponytail and can’t deal with wig. Third treatment today so next few days might be traumatic.

  • Jrunstroop
    Jrunstroop Member Posts: 12
    edited January 2020

    Hi JRNJ—wanted to answer your questions to me—hope treatment 3 went okay. I found I lost the most ungodly amounts after treatment 2 and 5 (I just finished 6 yesterday so too early to tell what it will be with six). I don’t go out without a hat since about treatment 4. I'm just going now to get my wig styled so I can like it more and start wearing it cuz it's time—I find myself daily saying f you to every hair I pick off of things and need to change my mental state about it and also need to stop saying f you150 times a day!. The hair loss has been fairly even so far so just my thick hair now is thin hair but my forehead has receded and the sides are very thin (for reference if I wear a baseball hat all of my hair only looks like it is behind my ears cuz not much on the side—looks kind of normal in a baseball hat). Anyway head down and marching along to get through this—I have an appt with msk derm but couldn't get in til after treatment 7 )and made appt afte treatment 2) to ask about taking bioton now while still in chemo.

  • JRNJ
    JRNJ Member Posts: 573
    edited January 2020

    Hi Jrunstroop, I was just thinking about you, as hair issues are annoying every day. I wonder if I can make it through this without a wig, but I doubt it. I've lost about 60%, maybe more. I stupidly thought in the beginning that brushing it out was a good thing because it's coming out anyway, but now I brush it as little as possible. I bought a bunch of root touch up spray for the gray and the thin spots, spray my hair and put it in a ponytail, and it still looks like a version of me, not noticeable to average person. But still coming out. Yes, treatment 2 was the worst, and I have treatment 4 on Monday. Wearing it in a ponytail gives me some control over the situation, so it only comes out when I want it to instead of shedding all over the place. I take the ponytail out, run my fingers through it, light brushing. Let me know what they say about biotin. I bought a bottle but am afraid to take it. Don't want to interfere with the chemo. I went on MSK website and they have a biotin page. Doesn't say not to take it during chemo, but has a few warnings regarding interfering with lab tests.

  • Jrunstroop
    Jrunstroop Member Posts: 12
    edited January 2020

    JRNJ--I noticed the same thing about Biotin which is why I was annoyed that it took so long to get an appointment! But I'm just annoyed these days about my hair anyways...I am scared to put it up because I was told to treat my hair as if I were "cold capping" and don't do anything to stress it. I wash it very infrequently (at least a week or more between washings and actually it seems ok) and only comb it with a big tooth comb once a day. When I put it up to work out during my week 2 recovery, I use a soft velvet scrunchie. Oh and I wash with room temperature water (that's a process because its' darn cold). Not like that really seems to be helping though. I'm thinking maybe I'll feel more comfortable being out and about with the wig but then I'll probably be thinking that everyone is looking at my wig. I know it's silly and you get it but I feel like I've spent so much time worrying about my hair, that is' just stupid! On the positive side, I ordered a ton of cheaper wigs from amazon and some really crazy ones to see if they may look cute with hats--going to try to have fun with it in addition to my overly expensive wig!

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