Jan 19, 2020:
We are two months into the clinical trial. No improvement in that all tumors & mets still exist and have gotten slightly larger (by millimeters). One new met in femur. Most mets are in sternum, spine, and pelvic areas. two large tumors on each adrenal gland.
3 hospital stays in Nov and Dec - reaction to treatment (high fever & pain which both go away a week or so after the immunotherapy infusions), and last was admitted on Christmas Eve for 5 days. Permanent damage to adrenal glands caused a variety of symptoms and he is now on steroids for that.
Lost a lot of weight, still working half days but will be done soon as disability was approved for now. He looks gaunt, has no energy or appetite, no motivation to plan or do things, PSA 88 as of 1/2/20. We don't do a lot. We both pray a lot and try to stay positive that he has more time. I can barely keep up with so many people checking in so I created a caringbridge site with updates. I take care of everything and him and am exhausted.
Drs don't feel there are a lot of options if this trial does not give him more time. What about Cabizitaxel? Or more Doceltaxel? They said since Enza did not work Abi won't either. Talked about Radium 223 at one point but they put that on the back burner. I think about 2nd opinions but Mayo Clinic is considered here in the US (and to other countries as well) the best.
I could use any encouraging words from you kind folks. We are only 18 months in, I thought we would have so much time trying different treatments.
Thank you,
Saint Paul