TNBC Brain Mets - Looking For Hope
Good morning all, first time poster here - having trouble finding similar stories, much less successful stories, that fit the scary place I'm in now.
Little background: diagnosed a year ago with stage 2 TNBC. Achieved PCR thanks to chemo — only to have two brain mets pop up almost exactly a year after my first diagnosis. The chemo that worked wonders from the neck down does not cross the brain/blood barrier, so unfortunately those cells could've been hanging out in my brain from the start.
I caught them early with symptoms, and got both cyberknifed, and had a craniotomy so that we could biopsy and confirm I still have the same receptors. Had a full body PET to confirm that the rest of my body is still in the clear.
Now I just kind of feel… Like I'm waiting for the other shoe to drop. This returns me to a blank slate, but now there are cells potentially floating around my brain just going to continue to create new tumors, that doesn't seem sustainable?
I sought out a couple of opinions, and they're recommending I use Xeloda as maintenance as it has the potential to cross the brain blood barrier and clean up any remaining cells? Or keep any cells from metastasizing? I'm just not finding any success stories where Xelota has effectively done just that for TNBC patients. Veryyyyy skeptical & scared, & my brain feels like a ticking time bomb.
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@nicolenoelpressley I can't offer any specific advice, but my heart goes out to you, and I know how scary this can be. You might want to follow the clinical trials thread. There are treatments in development for TNBC that should provide some real hope. Lots of research is targeting TNBC.
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Good Morning Tough
My aunt had the same issue as you. She got in a teial at Duke and its been 5 years now and ahe is doing great. She of course isnt driving now but she does everything she always did prior to TNBC. Blessings on your journey and expecting good outcome for you as well.
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