Triple Negative AND PD-L expression 0%

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tina_marie
tina_marie Member Posts: 88
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

Am I the only person that is Triple Negative and has 0% expression for PD-L? I'm not sure i'm even saying that right... What I do know is hormone therapy won't on me or Immunotherapy won't work on me either. So I'm working my way through chemotherapies.. my tumor markers are heading up consistently and i might be onto my next chemo. Currently on Taxol.. just had 17th treatment and my neuropathy is getting bad.

This new FDA approved treatment won't work for me. My MO told me last week he would of put me on it months ago if my PD-L was even 1%... but it's not.

I would love to hear other's stories.. Please respond. Thank You and best to all.

Tina

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Have you been tested for AR+ (androgen receptor?) There are drugs for prostate cancer that can be used with AR+ TNBC.

    Have you checked into Hyperthermia? UMD has it.


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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited March 2019

    Fellow TN here with no PD, PD-L1 or 4 present, and not positive for AR either. There are very few Immunotherapy trials out there not based on the 1 or 4 protein, but they are out there. I’m trying to get into one right now, but I’m not sure if the name just yet...I’m on a wait list. I did do an Immunotherapy trial that was using the PD-L1 protein and it worked to get 2 tumors stable, but I still had progression in other areas so ultimately it failed. Blowing through chemo like crazy here with the cancer growing and spreading quick. Not one has worked even for a little bit. I’ve been told as long as my body holds they will have chemos or treatments to try...if running out of options is your worry then hopefully that helps take the edge away. Plus there are new drugs and trials coming out to consider.

    My MO just did a biopsy on tumors that are now in my left breast (no cancer there previously at all) to check if my PD or PD-L1 or 4 changed and is now present in some of them. Not sure how this would work since I know my older tumors don’t express the protein so that’s the extent of what I know.

    It’s a shitty boat to be sailing on, but we can be shitty boat buddies together at least 😊
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  • tina_marie
    tina_marie Member Posts: 88
    edited March 2019

    Parrynd1: Hi my shitty boat buddy!

    So glad to hear that somebody is wading in this stinky process with me. Im about to do Taxol #17 this week and the chemo effects are crappy... My doctor said the same thing..if I can handle the treatment they have a bunch of chemo's to blow through. What are you on right now? the Halaven?


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  • tina_marie
    tina_marie Member Posts: 88
    edited March 2019

    Parrynd1.. how do you find out about these trials? you MO? or did you have to call a specific treatment center?


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