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19 hours ago
Hi all, glad to get back on this thread, especially to hear about your experiences with Y90 which my MO also pooh-poohed when I brought it up. I did find a radiologist that does it, mostly for liver cancer but was willing to look at my scans. So I am definitely going to follow up with that.
I find myself going back and forth between wanting to positively explore lots of options and wanting to just give up. There are implications for exploring all options both financially and emotionally. But we have a couple of rocky weeks aheas. the home care nurses that keep track of me (angels) have a supervising doctor who has been alarmed at my hypercalcemia (almost 4 when albumin corrected) and I have been on IV fluids and shots to try to get it down. The Doxil shut down my immune system in the meantime, we got it back up with those painful gut shots but I got a bacterial infection with high fever (luckily resolved with other bag to hand on the IV! They have tested my thyroid and parathyroid which have low values which is good because it means they are trying to compensate for the tumor related hypercalcemia. My liver values are all over the place, not least my GT so no painkillers for my constant pain. (Xanax helps). (Negative for COVID, wohoo!)
I shelled out two thousand dollars for the Foundation One genetic tests, finally got the pathologist to send over a tumor sample from my liver, heard through the grapevine (nice nurses who will read my chart to me) that there weren't enough tumor cells to make a determination. Also mumbles that they will do a new liver biopsy (ouch) and bone marrow biopsy (double ouch) and look at the new scan (taken tomorrow, but it usually takes 2 weeks for them to bother to look at it). Problem is that last visit I was already basically told I was out of options. caveat, if the new liver biopsy shows that I my tumor biology has changed again and I am now TNBC I may qualify for immunotherapy. Or maybe the gene tests will suggest a new international study.
Meanwhile two surly teenagers are finishing the school year, one of them finishes high school. My goal was to live long enough to be able to throw her a fun party but well, this freaking virus has taken that away. Plus any chance of seeing my family or friends in the USA.
Thanks for letting me rant. Love and hugs to you all, AMY
8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+
Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement