I'm Stg IV, TN - Please share your experiences with me!

lkellyr
lkellyr Member Posts: 19
edited May 2018 in Stage IV/Metastatic Breast Cancer ONLY

Just curious how many other woman have the same diagnosis. My spread is only to 1 lymph node near my esophagus but no organs or bones. I'm told that surgery isn't in the protocol for stage IV but I've seen women in the Community that have stage IV and have had surgery. Any thoughts?

I'm able to keep a pretty positive outlook and am super grateful for the support system I have. I'm very fortunate!


I'm on Xeloda and side effects are minimal, but I'd love to get rid of the peeling on my feet. If anyone has experienced this and has anything that works for them.

Keep your chin up, even on the tough days. If you can't, ask a loved one for support. It helps so much!


Have a lovely day/evening!

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited May 2018

    lkellyr, its good news that you do not have many metastases. If you fill in your personal treatment history, it will be easier for others to exchange information with you. I am also on Xeloda. I am managing the foot syndrome with a cream called Udderly Smooth, which has 10% urea. Others have used Aquaphor. Try to keep your feet out of very hot water also.

    There is a thread for those on Xeloda that you might wish to join. There may be one specifically for those with mets to lymph nodes as well.

    Best, MJH

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  • lkellyr
    lkellyr Member Posts: 19
    edited May 2018

    Thanks, MJHJAN1014. I thought I had filled that in, not sure what I'm doing wrong. Thanks for the tips! :)

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited May 2018

    P.S. Surgery for Stage IV varies depending on the presentation. Some, unfortunately, need rods placed in the femur for strength when there has been a fracture. There are also interventional radiology procedures, and of course biopsies. I have heard of the rare liver resection. Since Stage IV is treatable, but not yet curable, it is almost always treated systemically.Treatment depends on the profile of your particular cancer. Hormonals are used at the beginning with hormone positive cancers, herceptin and perjeta for HER2+. Not seeing your profile, I cannot see why you have been placed on Xeloda.

    Best, MJH

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  • lkellyr
    lkellyr Member Posts: 19
    edited May 2018

    Hm. My onco told me that current protocol says no lumpectomy / mastectomy for Stage IV because they assume 'distant spread' indicates cancer cells in other parts of the body that are too small to show on scans, but in previous protocols they did remove the tumor. Xeloda is working for me so far, tumor shrank so I'm ok with the side effects. Again, thanks very much for the info! :)

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