ER- PR- HER2+ TAXOTERE now w/ perm hair loss

EBBA12
EBBA12 Member Posts: 62
edited May 2021 in HER2+ (Positive) Breast Cancer

INITIALLY I was TN-IBC triple negative Inflammatory breast cancer - 3B

I had AC + T, then cisplatin + rad concurrent treatments...before surgery. Had modified radical mastectomy with thigh graft. SURGERY 4/20/21 came back with clean margins but not PCR - 13 lymph nodes with either micro, macro tumor fragments - 1-5% tissue/skin. —- but they got it all. —-$ GOING for whole PET SCAN 5/14/21.

CHANGE — Pathology FISH came back HER2 2.1 POSITIVE, therefore MO said more treatment options❗️They are looking at HERCEPTIN + PERJETA with TAXOTERE - which I read can cause permanent hair loss, including eye brows and lashes more likely. — Lawsuit pending - not sure who will win. — PROBLEM both MO + BS said I would get my hair back, mine just started coming so I was nervous and googled and found the above information.

My BS reminded me Ihave an aggressive breast cancer. EBBA


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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2021

    If you do a search on the board using key words such as "permanent hair loss Taxotere", you will find over 1,500 posts. Most references are included in threads that talk generally about side effects from chemo or specifically, side effects from Taxotere. The following 4 threads are specific to this topic:

    Topic: Taxotere permanent hair loss??? https://community.breastcancer.org/forum/80/topics...


    Topic: Taxotere and permanent hair kiss https://community.breastcancer.org/forum/69/topics...


    Topic: Permanent Hair Loss-Taxol or Taxotere https://community.breastcancer.org/forum/69/topics...


    Topic: Permanent Hairloss-Taxotere https://community.breastcancer.org/forum/6/topics/...



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  • Aram
    Aram Member Posts: 417
    edited May 2021

    Ebba, what are your other options? Are you going to refuse treatment or your concern is just that your MO and BS are giving you misleading information? Chemo has lots of side effects some of which are life threatening including heart failure. But for many of us the benefits outweigh the risks.

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    Aram - I guess I found my answer - yes there is always the cumulative affect over the years which is not known.

    it depends if they give you weekly, bi weekly or every third week - which most people would say great I go less - but what I found is this. And yes I chose life over breast - now life over hair. I was researching the difference between Taxol and Taxotere for hair loss - so the more toxic is every 3 weeks

    I have to wait to see what the tumor board comes back with - the answer I [posted it not final

    The drugs paclitaxel ("Taxol") and docetaxel ("Taxotere "), nearly always cause complete alopecia when given in a third weekly schedule, but hair loss is less frequent when the drugs are given in a weekly schedule.

    EBBA

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    the hair loss is almost always temporary and only rarely permanent

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2021

    Ebba, permanent hair loss on Taxotere is possible. There is a website called "A Head of Our Time" where people who lost their hair permanently posted about their experiences. You may want to check it out.

    Sometimes Taxol is a reasonable alternative to Taxotere. Ask your MO if there is an alternative for you that doesn't cause permanent hair loss. Best wishes!

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    Melbo Oh my, you have a lovely family - your dogs are beautiful, I have two myself s morkie and yorkie.

    Do you know if documented -hair loss depended on weekly, bi-weekly, or every third week treatment.

    Research I found was toxic and attributed to permanent hair loss. I am IBC INFLAMMATORY so they can’t fool around. The tumor board meets next Friday 5/14 so we will see...same day for my whole body PET scan which results can take up to three days to come back.

    Not sure if it matters but when I did bi weekly Taxol, some hair started coming back.

    I just bothers me both BS and MO said my hair would grow back, I would like to claim it, via our Lord and a Savior Jesus. AMEN.🐾 EBBA

    BUTTONMACHINE - thanks for the heads up for the web site - you are always a bundle of usefulinformation. 💓EBBA

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  • AlwaysMeC
    AlwaysMeC Member Posts: 167
    edited May 2021

    I am ER-/PR-, HER2+, and have had one session of TCHP on the three week schedule. I'm cold capping as well. My next infusion is on May 20. I'll try to update this thread with how the hair loss is going.

    When I was offered cold capping, my nurse navigator mentioned applying for financial assistance through the company. I didn't qualify, but if you are interested and if cost is a factor, the cold capping company may have some type of assistance available.

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  • EBBA12
    EBBA12 Member Posts: 62
    edited May 2021

    Docetaxel, carboplatin, trastuzumab, pertuzumab (TCHP) ok so Taxotere carboplarin herceptin perjeta

    I did read about COLD CAPPING, some people reported it worked, 🧣🧤❄️minor discomfort... what about your hand and feet. Which kind did you get, it was through the the cancer facility.

    Below NOT MEANING TO ALARM JUST EDUCATE

    My MO mentioned THP for me every 3 was for 6 x 8 treatments, still needs tumor board recommendation.

    My MO said MY HAIR would grow back after TREATMENT - did not mention possibility of permanent hair loss. I’m in menopause 59 so being bald again, I googled since my hair started growing back slowly after Biweekly AC + T.

    FYI only - Check website above aheadofourtime.org - Site women suffering from alopecia after taxotere - I thought about Taxol which I had before but if given every 3 wks might yield same as Taxotere since chemo is more toxic. I did read about Abroxane but mucho more expensive. Will have to research cold capping because I know its not offered at my infusion ffacility another option migrate but only keep your head cold for 20 or so minutes. You would have to ice before and after too so not sure if that is a possibility. I’m 59 minutes from my facility

    I know idea is to kill the cancer... in my case anything lingering.

    Fingers crossed 👍 good luck 🍀 on your progress and thanks for giving me heads-up

    Keep me posted on your progress.

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