Triple Negative Stage IV

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Comments

  • gr4c1e
    gr4c1e Member Posts: 124
    edited October 2021

    AP3 - I just assumed that Taxotere was the go-to for triple negative BC. Not really sure why.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2021

    There is a shortage of Abraxane and it is not being given anymore unless you were already on it...

  • moth
    moth Member Posts: 3,293
    edited October 2021

    Yes, but the question is why switch to taxotere instead of taxol. I always assumed if we were shorted here I'd go back on Taxol... (so far my center has still had enough for me). Of the 3 taxanes, abraxane & taxol are closer to each other than taxotere...

  • gr4c1e
    gr4c1e Member Posts: 124
    edited October 2021

    Yeah, it's a mystery to me, the whole Taxotere vs Taxol debate. I'm just glad this is temporary and hoping to get access to Abraxane again soon. I will say that my CA 27-29 dropped by 5 since the last infusion so, while I'm hating the side effects I'm powering through. (mantra: this is only temporary)

  • ap3
    ap3 Member Posts: 20
    edited October 2021

    moth, that's what's confusing me. I did have a quick google though and it seems that Taxotere might give better results than Taxol (but less than Abraxane), so perhaps that's why.

  • ap3
    ap3 Member Posts: 20
    edited November 2021

    Hello again all. My wife just got a call from her MO about her recent PET-CT. Apparently they can't find anything, it's a complete metabolic response! Whilst this is great news, does anyone have any experience/advice on how best to approach further treatment?

    She'll get another cycle of her current regimen (Taxol, Carboplatin & Denosumab) but with reduced carboplatin, as her bloods are low, then another PET to confirm her status, then "maintenance chemotherapy". I'm keen to learn what drugs are best to keep the cancer at bay, if it isn't actively growing.

  • Theresa987
    Theresa987 Member Posts: 9
    edited November 2021

    Hello all, I have Mets to bone, found by accident. Pet scan, CT scan says One sclerotic lesion on left hip. So between crying and telling myself I not dying tomorrow.... trying to get my head wrapped around this. I start Eribulin next week. I really need some positive vibes/survivor stories. And tips. I can hopefully keep working. I just want to stand outside in my backyard and scream.....my neighbors would probably call the cops.....so that's out. TIA

  • moth
    moth Member Posts: 3,293
    edited November 2021

    Hi Theresa987, sorry you find yourself here. Bone only is good - well as good as mets can get, kwim.

    Was your abraxane and xeloda for the mets or for stage III?

    Are your mets suitable for radiation/SBRT?

    Hang in there. Early days are rough but it gets better.


    Also, I've compiled a list of all the mTNBC systemic treatments in this post if you haven't seen it yet:

    https://community.breastcancer.org/forum/8/topics/...


  • Theresa987
    Theresa987 Member Posts: 9
    edited November 2021

    Thanks Moth, Abraxine and Xeloda was given with Original diagnosis. I'm just starting this journey. I'll check out the list. Eribulin will be the first chemo for the stage IV diagnosis.

    Will find out PDL1 status Monday...to see if I can do immunotherapy

  • ap3
    ap3 Member Posts: 20
    edited November 2021

    Hi Theresa,

    Firstly IANAD, but I would strongly recommend looking into using/adding a platinum drug with your MO.

    Apparently TNBC is often very sensitive to platinum drugs (info from 2 leading MOs). See my post above about my wife, who had 5 lesions in her spine and several lymph nodes, and is NED after just one cycle of Taxol & Carboplatin. She might just have been very, very lucky, but I think it's worth a conversation with your MO.

    Best of luck,

    Andy

  • moth
    moth Member Posts: 3,293
    edited November 2021

    On the flip side of adding running chemo's concurrently in the metastatic setting the NCCN guidelines recommend using single agents unless there is visceral crisis requiring very fast response. I think the logic is we only have so many treatments, so let's not blow through them. Otoh, I know other oncologists who prefer to hit hard & fast at outset, in case there's a chance of getting a NED (but we don't have any RCTs to indicate that this confers a survival benefit).

    re platinum chemo, here is a cochrane review from 2020 finding moderate-quality evidence of a small survival benefit from platinum in mTNBC https://www.cochrane.org/CD013750/BREASTCA_platinu...

    I will add the Cochrane review link to the chemo protocols post as well so it's easier to find

  • ap3
    ap3 Member Posts: 20
    edited November 2021

    Moth, you're completely right as usual. Her MO did also mention not using too many "tools in her arsenal" too quickly, and the NICE guidelines (we're in the UK) only recommend single-agent sequential chemo.

    My wife's "family" MO actually wanted to throw in Avastin as well, and her "real" MO was willing to try it, but her insurance wouldn't cover it. (I found a case study about this combination, but yes, it's only a case study - https://journals.lww.com/md-journal/fulltext/2015/10030/liver_metastasis_of_a_triple_negative_breast.44.aspx)

    The "Family" MO is based in France, and they don't tend to follow the rules. He "cured" another family member with Stage 4 lung cancer (~20 years NED, still alive), so naturally we've been listening to him. He actually wanted to start her on Trodelvy single-agent, but it wasn't approved here at the time. Once we told him that, he was adamant that she get a platinum with a taxane at the minimum.

    Or course everyone is different, but her "real" MO was astounded at the response, so again, maybe worth the conversation. Studies are great, but TNBC is of course a very heterogeneous disease, and it's hard to really compare results when each individual cancer is different.

  • gr4c1e
    gr4c1e Member Posts: 124
    edited December 2021

    Just an update; Since the Abraxane shortage I have been on Taxotere. The good news is my tumor markers are the lowest they've been all year, so I guess my MO's decision to move to Taxotere in the interim, until Abraxane becomes available again, was the right one for me.

  • moth
    moth Member Posts: 3,293
    edited December 2021

    good news GR4C1E! I'm still on Abraxane. My pharmacist must have squirrelled away some before the shortage....

    but I think I'm getting closer to a treatment change. Trodelvy is what she wants next for me. Bone scan tomorrow, CT on the 17th so we will see

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2021

    Is there a Trodelvy thread? I cannot find one and was thinking of starting one...

  • moissy
    moissy Member Posts: 371
    edited December 2021

    Here's one thread, Nicole.

    Sacituzumab Govitecan (Trodelvy)




  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2021

    Thank you Moissy


  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited December 2021

    Well, everyone, we know that TNBC means fewer options and I’ve run out of mine. I will no longer be on treatment and will be entering hospice after my paperwork for medical-aid-in-dying is finished. I have been looking for an active thread on dying and end of life issues but not finding one. Not where I wanted to be but here I am. Hope everyone has a great holiday!


    Lib

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2021

    Wanderingneedle I am so sorry. 😢 I pray you find peace in this time.

  • moth
    moth Member Posts: 3,293
    edited December 2021

    Wanderingneedle, I am so sorry this is happening.

    The big death & dying thread is not always active but many people have it in their favorites so I think it is likely one of the best places to post. https://community.breastcancer.org/forum/8/topics/...

    I'll be thinking of you lots


  • s3k5
    s3k5 Member Posts: 411
    edited December 2021

    Wanderingneedle, I am so sorry that you have reached a point where there are no treatment options left. I asked my MO what happens after all options have run out, she said we will have to try out repeating the treatments that were given some time ago. Is this an option for you?

    I am at a loss of words - don't know what to say. Hope you can get a second opinion. Where in CA are you located?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2021

    https://www.breastcancer.org/research-news/soy-may...


    I used to be afraid to have any soy when I was hormone positive but now...I see it should be ok....I just like to snack on organic edamame :)

  • karpc
    karpc Member Posts: 192
    edited December 2021

    Nicole - same here! Love to snack on it! ~Kar

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Has anyone heard of this https://www.verywellhealth.com/opdivo-nivolumab-uses-actions-and-side-effects-4144244

    I met a women yesterday in my TNBC group on FB that is 5 years NED!!!!!!! She got the above immunotherapy back in 2016-17 and has been NED she didn't know if she is PDL1 pos. or neg (she didn't even know what that meant) has any one heard of this??

  • ap3
    ap3 Member Posts: 20
    edited January 2022

    It's a PD-1 inhibitor, like Keytruda. They function the same as PD-L1 inhibitors and basically stop the tumour cells from supressing the body's immune response.

    I think I read you need to have >1% PD-L1 expression on the tumour cells for it to be effective.

  • moth
    moth Member Posts: 3,293
    edited January 2022

    hi everyone, I updated the list of treatments post with a link to a treatment roadmap presented by Dr Hope Rugo at SABCS in Dec 2021.

    https://community.breastcancer.org/forum/8/topics/...


  • chicagoan
    chicagoan Member Posts: 1,060
    edited January 2022

    I'm not triple negative at this point but a friend sent me an article this afternoon that might be useful for those who are. If this is already been posted, just scroll on by. The gist seems to be that Ivermectin can make Triple negative "cold" tumors "hot" and more responsive to ICI therapy.

    https://journals.lww.com/oncology-times/fulltext/2021/05050/use_of_the_anti_parasitic_drug_ivermectin_to_treat.4.aspx

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    I an taking Ivermectin and TNBC

  • chicagoan
    chicagoan Member Posts: 1,060
    edited January 2022

    I hope it works for you Nicole. If I become triple neg, I'll definitely try Ivermectin and/or FenBen.