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Triple Negative Stage IV

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Comments

  • SierraPineapple
    SierraPineapple Member Posts: 20
    edited December 2018

    My MO and I are still trying to find a treatment that’s really working so maybe that’s why she is only doing scans for now. Thanks for clarifying :)

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited December 2018

    I’ve heard recently that there is research into TN subtypes and are find that due to a subtype certain treatments work better than others. We just aren’t there yet unfortunately

  • hartrish
    hartrish Member Posts: 290
    edited December 2018

    Parrynd1

    I have read some about the different subtypes of TNBC. My next biopsy I hope to ask my MO to find out what subtype I have. Here is an article titled,

    Potential therapeutic targets of triple-negative breast cancer based on its intrinsic subtype


    https://doi.org/10.18632/oncotarget.20274


    Hopefully the article is useful.

    Tricia


  • hartrish
    hartrish Member Posts: 290
    edited December 2018

    My MRI and CT Chest results are in. I have no new lesions in my liver and my disease is stable. No lesions noted on the CT Chest. YEA!!!!!! Continue on carbo and gemzar.

    Tricia

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited December 2018
    Hartrish I’m playing I’m Still Standing by Taron Egerton for you :) that’s super news. And thanks for the link. I want to ask my MO as well. Let’s us know what yours says pretty please!


    So saw MO yesterday and she is pulling me off of Lynparza and Opdivo. I have a new tumor in the left breast (turning in lefties v cancer card) and the skin mets made my sweet composed MO actually curse out loud! Made me laugh as in the 2 years I’ve been seeing her I have only ever heard her curse when we found the brain met. I saw the RO today and we will do 1 big treatment this week (maybe next week) to hopefully kick it back a little in time for the wedding so you won’t see it with the dress on.
    Then I’m on the Halaven train praying it does something. It’s the 3rd chemo I will have been on and so far out of the 5 combos I’ve tried nothing has really worked much at all except a trial I did in the very beginning. We revisited the same family of that drug with zero success. As far as any other options for skin met treatments she said it’s too extensive at this point and chemo is the only option if RO said no (due to already having 30 rounds on that breast). Wish me luck!

    How is everyone else doing? Christmas is a week away!!!
  • thrivingmama
    thrivingmama Member Posts: 133
    edited December 2018

    hartrish -

    Great news! so happy for you! Enjoy the holidays :)

  • melb44
    melb44 Member Posts: 64
    edited December 2018

    Looks like I am joining you ladies. Got the results back from my bone biopsy and it was triple negative. I am in shock. No wonder that Tamoxifen Ibtook for three years didn’t stop me from getting bone Mets.

    I started palliative radiation this week to try to help with the pain and once done I need to start some sort of chemo or clinical trial.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited December 2018

    Welcome to our corner Mel. Sorry your here and hopefully the rads help.

    Hope everyone is doing ok

  • hartrish
    hartrish Member Posts: 290
    edited December 2018

    sorry Mel for your news. Welcome to the group. After radiation hoping they find a successful treatment for your cancer.

    Prayers and hugs.

    Tricia

  • TNBC74
    TNBC74 Member Posts: 6
    edited January 2019

    Congratulations!! And Happy New Year

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019

    Question: what treatment has worked best for you & for how long? We are struggling to find one that is working well and the TN is so aggressive

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    party d1: I have been on carbo and Gemzar for 17 months. Keeping my cancer stable. This is my first combination since my liver mets bx. Feeling blessed that it has worked this long.

    Have you had genomic testing to look for targeted therapies? That will be my next step I hope if this treatment stops working.

    Also what about PARP drugs or IMMUN 132 for you? Immunotherapy? I have not been on immunotherapy but keeping it on my radar for next treatment as well

    Praying you find the right drug.

    Hugs

    Tricia

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019

    Thanks for replying Tricia. I’ve been on Immunotherapy (Opdivo), carbo, 2 parp inhibitors (Talazoparib & Lynparza), and AC. We did do the genomic testing but didn’t get any good information back in regards to treatment options. We even tested to see if I may be androgen receptor + and I’m worried about anything working now. My RO thinks I may be radiation resistant as I had 2 tumors recur during radiationand MO is starting to talk about being chemo resistant. I’m glad you have a treatment that’s going well, you give me hope!

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    are there any trials out there with a chemo resistant drug and other chemos? I have read about drugs to help with chemo resistant but was not sure if they are in trials yet

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019

    Not that I know of directly, but we were opting for trials vs chemo because of the suspected resistance. I hope there is something. Who knows maybe Halaven is my miracle drug! It seems to work well for other TN’s

  • kcan
    kcan Member Posts: 19
    edited January 2019

    hi Parrynd1, I'm sorry to hear about what You're going through. Have you heard of cancer commons? You are connected with a researcher who can help find suitable treatment(s) tailored to your needs. I found them to be insightful and open. Sending prayers and lots of courage your way!!

    Mom has scans again on the 17th.

  • KPW3
    KPW3 Member Posts: 127
    edited January 2019

    Parrynd1, I didn't see above that you've been on this...immu-132. It was mentioned to me as a potential next treatment. I had one oncologist (who I saw for 2nd opinion) say he's had a patient on it for 7yrs!

    https://ichgcp.net/clinical-trials-registry/NCT02574455

    They keep saying (since last summer) it's about to be FDA approved so you wouldn't have to be in a clinical trial...but the trial might work for you.



  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    hartrish

    i just posted an article about combo therapies designed to thwart resistance on "calling all TNs"

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    thanks sandbarbarian. Is this the article you were speaking of?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5789156/

    Tricia

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    yep

  • KPW3
    KPW3 Member Posts: 127
    edited January 2019

    image

    This was cross posted...

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    KPW3: sorry to hear about your toxicities. Let me know what other immunotherapy drug they might try on you. You should be able to stay on the halaven even after trial, right? Maybe the amount of keytruda you got will keep working.

    That was a trial I have on my list as well

  • TNBC74
    TNBC74 Member Posts: 6
    edited January 2019

    The FDA was to approve - issue a Biologics License Application (BLA) - by Jan 18, 2019, that is next Friday. (See this from July 18, 2018: https://www.onclive.com/web-exclusives/fda-grants-sacituzumab-govitecan-priority-review-for-triplenegative-breast-cancer ).

    I enrolled in the Phase 3 trial but got randomized to control which was single-agent Gemcitabine at 800 mg/m2 on a 4 week cycle (infusions Day 1, 8, 15). That lasted 2 cycles before the doc deemed it best to switch to standard 3 week cycle Gem/Carbo adding Carbo at AUC 2 to Day 1, 8. 4 cycles done and a scan due next week.

    IMMU-132 a possibility (if approved by next week) if results negative


  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    TNBC74: I have been watching for IMMUN 132 information to come out. Hopefully it will be approved.

    I am on a 3 weekcycle with carbo/gemzar.

    1st week: carbo and Gemzar

    2nd week: Gemzar only

    3rd week: rest week

    I get about 320-350mg of carbo and 1440mg of Gemzar per dose.

    Hoping you have great scan results!

    Tricia

  • tina_marie
    tina_marie Member Posts: 67
    edited January 2019

    Hi everyone.. Checking back in with this thread.. I saw this question asked a couple of times here but never really saw an answer... Hopefully that's not a bad sign... Tennelle76 asked it last a couple of months ago and i didn't see any answers... Forgive me if i missed the discussion.


    "Anyone on here who has exceeded expectations and lived beyond the 3 years that us Metastatic TNBC are given as a life expectancy?"


    Im stage 4, dx in 9/2017... Biology changed and became TN in Feb 2018.. Resistance to immunotherapy as well... Taxol working well... At least knocked my tumor makers in half 1288 to 588... Scans should be done next month. Last scans showed everything stable after AC... And 10 mos of continued progression.


  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    Tina marie: I am 18 months from met dx. Doing well on carbo/gemzar for the last 16 months. Hoping this regimen continues for a lot longer time.

    How did you find out you were resistance to immunotherapy? Genomic testing

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    TNBC74: I believe you have a scan this week. What day? Praying for great results.

    Tricia

  • tina_marie
    tina_marie Member Posts: 67
    edited January 2019

    My PA showed me in my biopsy results, and dang I can't find it now in my patient portal... it was something like PRN, PL2 and it stated / came back as "no expression". She told me this means... there is nothing receptive on the cancer that work's as a beacon to let the immune system know where the cancer is. When I get home tonight.. I'll be able to look up what I was searching for the day she told me about it.


  • KPW3
    KPW3 Member Posts: 127
    edited January 2019

    tina_marie, so you haven't been given immunotherapy? I've seen some evidence that even those not expressing pd-l1 can respond. I have had a response with immunotherapy, but don't know if my tumor expresses what it is supposed to. My tumor was initially Er+ now TN.

  • tina_marie
    tina_marie Member Posts: 67
    edited January 2019

    KPW3: No I haven't been given immunotherapy... right now they are doing taxol until it decides not to work anymore... i asked them about immunotherapy and they said that my pd-l1 is not expressing... Is this the case with you?

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