Capecitabine not working

what’s next after capecitabine (xeloda) failure? I am ER+ and HER2- . Took ibrance and letrozole for 5 years NED. Then tried Fulvestrant with no luck and now capecitabine first scan shows progression. What’s next for me? I’m scared.

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  • cure-ious
    cure-ious Posts: 2,992

    zipMonk, Has there been a genomics test done on the cancer, to look for mutations, like ESR1, which might be responsible for the progression? Is progression in bones or liver, etc?

  • moderators
    moderators Posts: 8,872

    @zipmonk, we're sorry to hear about your progression. We came across this article from our main site that discusses What Happens if Metastatic Breast Cancer Treatment Stops Working. Hope this helps!

    And if you want, you can also join some of our very supportive Virtual Community Meetups. There are many different groups, some of them for metastatic breast cancer members, so if you're interested, please check them out here: Virtual Community Meetups. Remember, you're not alone, we're all here to support you!

    Warmly,

    The Mods

  • Hello Zipmonk,

    Our time schedules sound alot alike. I just had my first treatment of Enhertu yesterday. There is a thread for it. I've just started posting there.

  • moderators
    moderators Posts: 8,872

    @shannon1965, unfortunately, @zipmonk is HER2-negative, and Enhertu is for HER2-Postive and HER2-Low breast cancer.

    Although, zipmonk, you could ask your doctors to retest your HER2 status as some breast cancers that have been treated as HER2-negative are actually HER2-low.

    "HER2-low breast cancer has a 1+ score on an IHC test or a 2+ score on an IHC test plus a negative FISH test."

    Read more here:

    We hope this helps!

    —The Mods

  • oh shoot sorry about that! yes I am low Her2 positive, only a plus1. Sorry and good job moderators!

    Shannon

  • thanks all for your helpful replies . They did foundation one testing and there is nothing “actionable” revealed by the tests. My onc has mentioned Enhertu. Thanks so much for all the great suggestions.

  • cure-ious
    cure-ious Posts: 2,992

    ZipMonk, And hopefully you are getting a second opinion, best even at a cancer center where they do a lot of clinical trials, its great for getting a plan set up for the future and to hear about good options…

  • Zipmonk, agree with Cure...oius, it definitely good to have 1 or even 2 oncologists that are well connected to clinical trials. Even if you just meet with them as a second or 3 rd opinion. Capecitabine also quit working for me, not sure it ever really did work. I am now on a clinical trial hoping to hold off on IV chemo for as long as I can!

  • vik2ri
    vik2ri Posts: 11

    Hi,

    I am hoping to get some feedback from you lovely ladies on Xeloda. I was on ribociclib, fulvestrant and zometa (switched to xgeva in Oct) for almost 11 months but progression on liver was noticed in January, so I am just on Tamoxifen and Xgeva now for 3 months and we will do other scans but doctor is suggesting Xeloda and I am wondering how successful everyone has been with Xeloda. It seems that every treatment we tried so far only worked about 11 months 😞😞

    I know once moved to chemo, list of treatments getting smaller 😩

    I have young kids and want to fight and be here for them as long as possible.
    Has anyone with liver metastasis done any treatment on liver?
    My doctor doesn’t want to put me on any other targeted treatment as he doesn’t think it works.
    I also requested to do FoundationOne but don’t know how accurate and valuable that would be. It’s a costly test but I am grasping for anything I can.
    My doctor is not very open to do any testing to see if perhaps cancer has changed its behaviour and receptors, he is very much so just stuck on Xeloda.
    I will also start some radiation on the bones, my pain is not to crazy but I am hoping radiation would also reduce the spread 🙏

    Any info on how long Xeloda is being effective is truly appreciated

    And what are some of the trials that might be there? Maybe I could ask if it’s offered in Canada.

  • Hi @zipmonk I was on capecitabine for maybe six months and found it relatively easy until I had progression. On Afinitor and Exemestane since then, and probably about to move on from them. It’s always horrible when a treatment stops working and you have to move on, but there will be alternatives. Bon chance.

  • cure-ious
    cure-ious Posts: 2,992
    edited February 8

    Vik2ri, The liver biopsy can be quite informative, and given how important those mets are it could be very important; they confirm the ER/Her2 expression but also can give actionable mutations and if so, say whether those mutations are clonal or not- if clonal the mets can all be sensitive to the same drug, if not then you'd want a combination trial.

    also does the cancer have ESR1 and/or Pi3KCA mutations?

    Some trials restrict the amount of chemo or the number of lines, so it can be a really good idea to check them out before starting chemo.. where in Canada are you located?

  • cure-ious
    cure-ious Posts: 2,992

    Perky, Are you on that KATB6 trial still? I was just looking at that one, their numbers are really good and I wonder how you feel about the side effects?!

  • cure-ious
    cure-ious Posts: 2,992
    edited February 8

    ZipMonk, I think I saw that enhertu was just approved for Her2 ultra-low? Well worth getting a second test they really don't see much difference in responses between Her2 low v ultralow

    PS Here is the article. Her2-ultralow refers to an IHC score of 0! These cancers still have enuf Her2 expression for Enhertu to work, it doesn't need much

    https://www.onclive.com/view/fda-approves-trastuzumab-deruxtecan-for-pretreated-her2-low-and--ultralow-metastatic-breast-cancer?utm_source=www.onclive.com&utm_medium=personalizedContent

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