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New liver progression - looking for advice/suggestions

pirate_girl Member Posts: 31

Hi all -- I am looking for some current advice / suggestions regarding options because I have some new progression. (Note: tried searching the different threads but new format continues to make that difficult, and lots of posts are pretty old.)

I'm HR+ / HER2- (+1) based on initial MBC liver biopsy 3 years ago. I've been thru the usual suspects: Ibrance/letrozole, Verzenio/fulvestrant, Piqray/fulvestrant, everolimus/fulvestrant, and most recently capecitabine (started in Feb. '22). My scans in June were really good from the capecitabine (had been on it for 4 1/2 months at that point).

I had scans last week, and I have a new liver lesion 2-3cm -- unclear if it's an old one that grew back or a totally new one. I see my MO later this week and am trying to be prepared. I am hoping that maybe it's time for another tissue biopsy.

1. Enhertu may be an option. But, what are the "usual" next steps after capecitabine? I looked at NCCN guidelines but can't really tell what might be next, now that I have gone through all the targeted therapies and capecitabine. It looks like it may be time for IV chemo of some sort.

2. Has anyone (recently) gone to / sent tissue samples to Nagourney or Weisenthal clinics for "personalized" testing? What was your experience?

3. Is localized treatment (radiation, cyberknife, etc.) an option ? (again, I looked at Liver tx thread, but hard to navigate and not a lot of recent posts) (and again, will be asking MO all of this, but it helps me to have some idea of options ahead of time)

As I know you all can understand, progression is hard to deal with, and I was tolerating capecitabine really well -- I haven't felt this good since before my dx. I am having a really hard time with the fact that I have progression -- this one is hitting me harder that earlier instances.

Thanks for any advice / suggestions you all can provide.


  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    pirate_girl- sorry for your progression.

    I am in a similar boat. Learned that Xeloda failed me and progression occurred. MO wants to start Doxil (IV chemo). I have an MO meeting this week to get my approval.

    Scary times as I believe that means only IV treatments from here on out. Arrrrggggg

    I started HR+ HER2- Last 2 newer biopsies show ER + PR- and HER2 +1 (low) which could mean Enhertu as an option EXCEPT Enhertu comes with a black box warning about lung issues. I am being treated for pneumonitis from Afinitor so Enhertu is a no go per my MO.

    I hope someone can respond to your other questions and that your next tx kills cancer.

  • guin8
    guin8 Member Posts: 9

    Very sorry and sympathetic for the progression. I too am having some liver progression, been on Kadcyla and doing very with tolerance, but looks like it's stopped working, doc proposing a regiment including Enhertu. This would be my fourth go with possible hair loss, which I am not super-willing to endure again. Any one on Enhertu that can elaborate on hair loss?


  • pirate_girl
    pirate_girl Member Posts: 31

    Thanks dodgersgirl and guin8 for your responses. No one really understands but for folks on this forum how devastating it can feel to get a bad scan and face new treatment with new side effects. One of my support group friends recommended getting a port now that I am likely headed for IV chemo -- do either of you have a port? My understanding is that several of the chemos can really irritate your veins, which we otherwise need for bloodwork and scans.

    Thanks again for weighing in.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    pirate_girl—- I recommend a port for IV chemo. You are correct about some of these drugs being dangerous if leaked from the vein.

    I have had a port since 2017. I get all my blood draws for CBC and such from the port. Much easier for me. The CT scan and bone scan people use my port, too.

  • nkb
    nkb Member Posts: 1,561

    Guin8- i responded to this question on the "Has anyone started the new drug Enhertu thread." today.

    there is also a Facebook group for Enhertu which is quite active where you can get info.