IBC HER2+ TAXOTERE permanent hair loss - l

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EBBA12
EBBA12 Member Posts: 62
edited May 2021 in IBC (Inflammatory Breast Cancer)

Anyone with permanent hair loss using Taxotere for 6 to 8 treatments every 3 weeks. I had AC + T (Taxol)

I will also be on HERCEPTIN + PERJETA

READ about on going lawsuit - worried BS and MO said I would get hair back, BS did not commit to eyebrows and eyelashes - maybe she doesn't know❓Also read about tearing issues if not immediately treated by ophthalmologist it can be permanent❓... so therefore I am asking below questio

I know TAXOTERE is newer than TAXOL but what is the difference❓

Posting here because I am still inflammatory BS was Triple negative but pathology came back FUSH that I am now HER2 2.1 positive - so the new drugs above. EBBA


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  • DeniseML
    DeniseML Member Posts: 81
    edited May 2021

    wow ! why is my MO so selective to what she answers when asked about these side effects? My hair is growing back after 6 TCHP treatments, last one December 8th 2020, with the exception of my eyebrows. I did lose them last, so expected them to grow back last. No sign of them yet. Also have the tearing which never resolved. she asked if I saw an ophthalmologist. There is a procedure they do to treat the constant tearing. My question is ; Why would I see the ophthalmologist if I was expecting this to resolve because I was never told it could be permanent? I am still receiving targeted meds until October.

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    HAPPY to hear you have hair - is your hair thinner or the same? Are you young? Sorry about your eyebrows, what about your eyelashes. I found there is mirco blading but can be expensive? Sorry your MO was not forth coming with the possible side affects but this looks like your first chemo and you have hair! . I already had AC + T

    I read every 3 weeks is more toxic vs weekly or biweekly. Since I already had Taxol - and my hair is slow growing so curious if I receive another round would would I still have hair??? maybe not with the 3 weeks treatment - I might with weekly or biweekly. I will have to ask if its an option with Herceptin + Perjeta...since I need all three. as a mop up.

    I had to dig to find out about the tearing - yes ophthalmologist would put in a stint so not permanent Not sure maybe contact one to check possibilities ? I woudl ahve never thought it was anything otehr that allergies?

    I read every 3 weeks is more toxic vs weekly and biweekly. I already had Taxol once - and my hair is slow growing but I have to wait and see what I end up with. Curious if I receive another round would would I still have hair afterwards ??? EBBA

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    You can search TAXOTERE hair loss - on breastcasncer.org there are posts - also check website aheadofourtime.org - as as FYI only. EBBA

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  • Sher0402
    Sher0402 Member Posts: 51
    edited May 2021

    I have permanent hair loss after TCHP. Caused by the taxotere. I had extremely thick hair and what I have is very, very thin hair. I use hair extensions to fill it in. I would cold cap if you can.

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    sorry I had to pray several times for GODs direction and purpose in my life. I do believe in paying it forward.

    Initially my chemo did not react well to AC + T so they were thinking of doing surgery anyway, I prayed to GOD for guidance for the tumor board, After they discussed my case it was recommended more chemo cisplatin with concurrent radiation. I felt blessed and relieved my prayers were answered. I did not received PCR but I had clean margins. Now this came up as a mop treatment (TAXOTERE HERCEPTIN + PERJETA) up since my TN-IBC changed after FISH pathology to HER2 2.1 positive.

    YES My MO + BS did not say anything about side affects - they said my hair would grow back. I am sorry you suffered and you were probably not informed of any side affects. Reason being as of 5/2021 I was not. I was just informed my hair would grow back. The BS called me and I pressed her for info after locating some information on google. BS said she was not aware of any case and that I had an aggressive cancer. I asked about eyebrows and laces - she did not comment.

    I do not have thick hair and cold capping is not an option with my first 8 rounds. Not sure what is available for me. I still have to research. Thank you again for responding. EBB

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2021

    A hint while on chemo - use vaporizer or humidifier in your room especially if you have AC or heat on or are in a dry climate. It helps with the dry eye and dry nose problems. Nosebleeds are another side effect that can happen, moist air helps

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2021

    For my eyebrows, I use brow makeup, I haven t gone for microblading. Wonderbrow works great for me , stays on in heat, sweat, and even swimming. If swimming, I layer it with a waxy brow pencil and it does stay.

    My watery eye comes and goes. It was not as bad once I got off Taxol, seemed to be abating, and then when I switched to the Herceptin shot, it started again. Could be coincidence, not sure

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