I’ve been hiding from this site because sometimes I feel like I’m already drowning in cancer. Yet, I find whenever I post I have received useful information, kind support, and I hope pieces of our experience may benefit others.
We are nearing 2 years since my husband was diagnosed. At time of diagnosis PSA was 556, had metastasized to lymph nodes, bones, and bone marrow. Three week hospital stay, blood, plasma, platelet transfusions. Degarelix and Casodex tried first. First dose of docetaxel started in ICU and he survived to be discharged, wasn’t expected to live six months. 9 rounds of docetaxel, taken off my MD Anderson. Nadir was 2.28 I believe. Two months later PSA rising again and Xtandi started. Nadir .78, but after 4 months PSA started rising again. At my last post my husband was refusing chemo. Right after that we received a scan showing “innumerable” new lesions on his spine and ribs. PSA was skyrocketing, and he started chemo STAT. He was initially a candidate for Vision, but then wasn’t. UTSW changed his treatment plan to indefinite chemo, which is not acceptable to us. He has now had two docetaxel infusions, is still on Xgeva, Lupron, Morphine, Norfo. Missed last infusion bc he was in ICU with an intestinal infection- that’s us there in the pic! He is having one more infusion next week, though I wish he wouldn’t. I feel like this last one almost killed him. His PSA is down to 1.5, and we are seeing a Dr at the Siteman Center in St Louis who will be starting him on Provenge July 15th, after which they hope to have a trial recruiting again that he thinks could benefit Joe. So- that’s where we are. I am terrified right now. I’m falling asleep crying. I’m heartbroken. I feel like the writing is on the wall and time is limited. We are meeting with a palliative care Dr. in two weeks. I really just want to take Joe and our kiddos away and spend all the time together, so I hope Provenge is being offered with genuine belief it will be helpful, and not just as a last ditch resort, because it means that for a month we will be away from our children for a considerable amount of time. That’s where we are. Thankful as always for this site and the support we’ve gotten here!