Newly diagnosed stage 4 - triple negative

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Shadow1425
Shadow1425 Member Posts: 4
edited August 2021 in Stage IV/Metastatic Breast Cancer ONLY

it’s been 12 years since I was first diagnosed with breast cancer. On July 7 th ,I was diagnosed with triple negative metastatic breast cancer. It is in my lymph node in my neck and also in the bones of the pelvis,femur and hip. Just started chemo on August 26 th and I feel like I’m totally overwhelmed. I need some guidance on what my future will look like. I can’t seem to be able to wrap ny head around what is going on; like I felt when I was diagnosed the first time. I have started chemo ( Carboplatin + Gemstar) on August 26th. Has anyone been on this regimen??? Also my daughter doesn’t think this should be the first line of attack for triple negative. Does anyone have any insight as to whether this is the typical starting point

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  • moth
    moth Member Posts: 4,800
    edited August 2021

    Hi Shadow, sorry you find yourself here after 12 years. Were you TNBC back then too?

    We have a stage IV triple negative thread so I really suggest you join in there https://community.breastcancer.org/forum/8/topics/...

    The current as of today guidelines for first line, if you're PD-L1 positive is atezolizumab + abraxane. BUT that is likely going out the window as Roche today withdrew their application for atezolizumab with the FDA.

    On p 93 of the thread I linked above, 4th post down, I have written out the most common Stage IV treatments.

    Gemzar + carboplatin is on my list for next lines (I have a choice of that or Xeloda). After that I will hopefully be able to access Trodelvy (it's not available in Canada yet). I have another clinical guideline document about treatments for mTNBC which I will post for you.

    There is a gemzar thread there, but not everyone combines it with carboplatin. FWIW, platins are considered a good choice for TN.

    Have you had Foundation One testing? Ruled our BRCA (germline or somatic)?

    Also come join the bone mets thread. Are any of your bone mets candidates for regional treatment with radiation? https://community.breastcancer.org/forum/8/topics/...


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  • moth
    moth Member Posts: 4,800
    edited August 2021

    https://t.co/YpHhNpM4Kf?amp=1

    (sacituzamab = Trodelvy)

    image

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  • Shadow1425
    Shadow1425 Member Posts: 4
    edited August 2021

    Moth, thanks so much for your reply

    No, when I was first diagnosed 12 yrs. ago, I was er+,pr+ her2 negative. When they discovered the swollen lymph node in neck and did a biopsy it turned out triple negative. My MO said this does happen.

    They tested for PDL1 and it was negative.

    I will check out your link for stage 4 treatment schedule because my daughter feels this combination of chemo drugs is not a first line treatment. She’s wondering if my MO is not telling us something if she has skipped some drugs that could have been used first. As I am she’s trying to get caught up real fast on all the possible treatments.

    Sorry, I don’t know what Foundation One is ??

    I don’t have the BRCA gene either.

    Thanks again for your reply. I posted in the Gemstar thread also.

    How do I show my diagnosis under my posts. Is it something I do in settings???

    Thanks again

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  • moth
    moth Member Posts: 4,800
    edited August 2021

    Once you filled out profile with your diagnosis, you have to go Settings (usually on the left side menu) and then choose to make it public and then it will show up in your signature line.

    Yes, loss of markers is not unusual at all. Makes it harder to tell if this is a recurrence or a brand new primary & depending on whether you had chemo and which chemo you had the first time, might dictate your treatment a bit.

    So the Foundation One and BRCA are linked. You probably had YOUR genes tested for BRCA mutation. Foundation One, Tempus and Caris etc are next generation sequencing and they test the TUMOR for mutation. Sometimes the person has no BRCA mutation but the tumor does.

    We have a thread on those tests. https://community.breastcancer.org/forum/8/topics/...

    They're expensive, and frankly they're sort of low yield for most of us but there are 2 targettable actions for triple negs that can pop up - a tumor BRCA (which could be treated with PARP inhibitor) or PI3K mutation (which could be treated with Piqray.

    Otherwise it's immunotherapy, chemo and Trodelvy (sacituzamab govitecan, which is an antibody drug conjugate).

    If you tested neg for PD-L1, then this is a reasonable start treatment. We don't have much for triple negs & the actual sequence of chemos is from what I see more of an art than science. I started right with a Taxane and immunotherapy. If I hadn't been able to get the immunotherapy, Taxol was going to be my first line. I mean maybe I could see trying a single chemo first but otoh, TN is considered aggressive and depending on your tumor burden, I can see a proactive broad approach also being appropriate.


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  • moth
    moth Member Posts: 4,800
    edited August 2021

    From NCCN

    image

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  • Shadow1425
    Shadow1425 Member Posts: 4
    edited August 2021

    Boy, thanks a lot , Moth, you gave me a lot of info that I needed. I’m feeling more comfortable with her treatment choice. I still will have some questions for her when I see her Thursday for my next treatment.

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