Spouse has had a wonderful run on Lu177. Is now about to get his final infusion this week. PSA was dropping fast (down to 185) up until the supply issues struck; he missed one complete cycle which was stuck on the end. Since then, PSA has dropped to around 345 at the 5 week mark following the infusion. He's feeling stronger, eating well and managing any pain with minimal meds. He is diabetic, well controlled with Ozempic plus Triceba.
Because of jaw numbness, the oncologists ceased his once per month Denosumab about 3 months ago. Jaw has slightly improved, but no one seems to know if the cause is Denosumab or the Hep E that we contracted, or something else.
He has been on 3 clinical trials of which one "worked" (ALP dropped fast) but 2nd dose put him into a cytokine reaction that required Toczilumab, so they wouldn't rechallenge.
The LU177 has been the only treatment where he has had a decent QOL.
Scan prior to LU177 showed bone mets only with possibly some involvment in a groin lymph node.
As we understand it, the following are possibilities:
Xofigo (maybe)
Provenge
BAT
Cabitaxol plus Carboplatin (which he will refuse -- the Docetaxol was SO awful, didn't work and he ended up almost in a wheelchair, so if that is the only choice, he will go for hospice.)
225 Actinium (clinical trial within driving distance, but they have supply issues at present. this is fine as he would have to wait a minimum of 6 weeks from the LU177)
CAR T trial (City of Hope LA?) We would travel. It is our understanding that cytokine reactions are expected in these trials and are managed, not a reason for being kicked off the trial.
The above is all in the USA.
We are prepared to travel at least to Europe to access proven treatments such as AC 225.
We will be discussing this with his oncologists this week. They run clinical trials and so there is a divergence of interests at this point (they will offer us THEIR trials, not necessarily the ones that are the most promising. Furthermore, he's always on the dose escalation arm, but my feeling -- and his -- is that he is too weak to do that again.). Should we get other opinions? We're in San Antonio (with a branch of MD Anderson locally --of which we have heard mixed reviews) and can easily get to Houston. Also willing to travel elsewhere.
Would be most grateful for all thoughts and suggestions.