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Hair loss 3.5 years later

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so I finished chemo 3.5 years ago, my hair grew back and was never as thick as it was pre chemo but that was actually a gift from chemo (it was waaay too thick before) I was very happy with my chemo curls and all of a sudden it began thinning several months ago. In talking with two individuals who went through chemo at the same time, they are experiencing the same thing! I’m not on any hormone treatments and was post menopausal prior to tx. I’m 50. I’m so depressed about this bc the double mastectomy makes me feel unattractive enough. I can’t find any information online that this is a thing. Any help would be really appreciated

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  • moderators
    moderators Posts: 7,925
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    So sorry to hear this, @rubydream. Can you share which chemo medications (and any other treatment medications you had) so others can weigh in?

    —The Mods

  • rubydream
    rubydream Member Posts: 38
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    I did 6 treatments of taxotere, carboplatin, herceptin and perjeta followed by just the herceptin and perjeta, then radiation for five weeks in 2019 and beginning of 2020

  • scoleman2013
    scoleman2013 Member Posts: 2
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    Hi, I went through this same thing around this same time…. a 10-year survivor in July 2023 —-around year 4 my hair started to get thin…like bad. I was 44— I will be 51 in Sept. So I understand what you are going through. When this happened —I freaked out —cried all the time…It was almost as hard as shaving my head 14 days after my first chemo—since it was coming out in clumps. I was like—NO….not again. I was like….you have taken both my breasts and my hair once—please not again. Like you, my hair came back thick and super curly whereas before it was thick and super straight. So I had to learn how to manage curly hair —this was beyond hard in itself. Then it started to fall out again and barely came back and when it did it was super gray and wavy. So I understand the ups and downs of this.

    When I was able to I started researching what to do to help with this….I tried to take as much control back as I could. I changed my shampoo, and my hair person, moved to all organic products and we focused on improving the health of my hair…I could not do this alone. I started spending 10 mins a day total —off and on whenever I would think about it and I would massage my scalp. At first, I just used my nails—then I found Scalp Massager Shampoo Brush—I got this off Amazon. They are so cheap. (not supporting any specific one…just showing you what kind I am talking about)

    I will be honest…this has taken years to come back from—like you my hair was super thick before cancer…while it's not back to where it was…..It is so much better. My hairstylist tells every time I see her—it's getting thicker. When I started to get compliments on my hair again-it was like a weight was lifted—all the years of expensive products and no ponytails and stressing over what else I could do to help —it was paying off…I went for so long not getting any and this was so encouraging when other people saw a difference. you are not alone—remember-start small, do your research, and make the effort. It will get better but it will take time….it goes away fast and comes back slow.

    Please let me know if you need help with questions on this or what products I used….I have tried so many…lol

    I am here to help.

    Keep up the good fight…you are beautiful no matter how much hair you have —just remember you are a survivor.

  • rubydream
    rubydream Member Posts: 38
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    thank you so much. This is very helpful and encouraging.

  • fairchild
    fairchild Member Posts: 138
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    I just found this thread and really appreciated the posts here. I'm 5 years out from treatment with taxotere, carboplatin, herceptin and perjeta, after a double mastectomy. It really took an extremely long time for my hair to come back after chemo— At a full year I still only had about an inch of hair. It continued to grow after that, but was much thinner and finer than my previously thick hair. I really struggled a lot with my self-image. Fortunately, it seems to have filled in a bit over the last year and I've found some ways of styling it that I like better.

  • t.amie
    t.amie Member Posts: 2
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    Reach out to your PCP about getting your thyroid levels checked.

    If you had radiation, it's more than likely a latent effect on thyroid function.

    My thyroid levels were okay during chemo, but daily radiation for 5-weeks, has really wreaked havoc with my thyroid. Recent thyroid labs show my thyroid hormone levels are all low. The result is muscle weakness, fatigue, and brain fog. This is after completing radiation more than 2-months ago.

    I became hypothyroid after being treated with radioactive iodine for hyperthyroidism. Hair thinning is a hallmark of needing thyroid meds adjusted. A few red flags are brain fog, losing words, fatigue and weak nails.

    I strongly recommend getting thyroid levels checked!!

    Best of luck!

    Tre'

  • t.amie
    t.amie Member Posts: 2
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    Because my hair was thin due to chronic thyroid issues, regrowth after was slow thin and skimpy.

    However, prior to starting chemo, I found a research study about Viviscal Hair Growth supplements. Study images were taken at baseline, 90-days and 180-days; changes in hair growth looked promising.

    As such, I discussed wanting to take Viviscal with my radiation oncologist. She gave the green light to start Viviscal at any time. However, I decided to wait 6-weeks after radiation ended to order.

    It's been nearly 7-weeks and I have 1-inch long strands of hair growing all over my head!! A few weeks after starting, I noticed hair growth along my hairline and temples, which is great as the hair at my temples was really sparce. My eyebrows are fuller and my nails don't break and split all the time. I haven't had strong nails since Dx with hyperthyroidism years ago!!

    In addition, it's affordable, at only $35 per month. For anyone interested, here's a link to the research study:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4689507/#ref-list-a.l.btitle