It's been 6 months since the CAR-T clinical trial at Mass General. At my most recent appointment there, I was told that the FDA shut down P-PSMA-101, and that I was the last patient enrolled. During trial, psa increased from 0.9 to 2.1
In December, I started having double-vision. It started side-by-side, then progressed to over-under, and now the vision from one eye is rotated about 30° with respect to the other.
As of 1/3/23, pain in the legs, hips, pelvis, rt shoulder, lower and upper spine have all increased. M.O. prescribed Zytiga plus Prednisone as last resort. Increased pain medications to help manage breakthrough pain.
On 2/28, double-vision and breakthrough pain have increased further. PSA now 6.2.
M.O. recommends hospice care. He believes the symptoms all point to leptomeningeal disease where the tumors seed the cerebrospinal fluid with cancer cells and spreads very quickly with no known cure.
I want to thank this group for their support. I'm so happy to have had you along for the journey.
I am so sorry!