On Monday I took the first dose of vorinistat, one of the two drugs that are part of the clinical trial. So far I think I have seen no ill effects, although I did have a nose bleed last night and again this morning. Bleeding from the nose or mouth could be a sign of low platelets, so if it continues to happen I will call the doctor's office to report it.
I also spoke with the radiologist in charge of the scan part of the trial. I had asked him to review the two scans taken at UW and SCCA and compare them to my previous PET scan from last November, taken at Minor and James. He said the scans may or may not show changes in my liver mets, due to having been taken by separate machines and read by different radiologists. And of course my tumor markers have continued to drop to almost in the normal range.
This trial expects to show that cancers which were originally estrogen positive, and then changed over the course of time to no longer be as estrogen positive, can be returned to their original sensitivity. The vorinistat, followed by an aromatase inhibitor, would presumably make this happen. Evidently I am exactly the kind of patient the SCCA docs were looking to enroll in the trial. My cancer was originally highly ER+/PR+ and has changed over these nine-plus years to be less so.
The scan part of the trial measures the success of the drug combination. A regular FDG PET scan shows areas of cancer by their sensitivity to glucose. Tumors uptake glucose more quickly than other cells. Hence I fast before the scan, to have the least amount of glucose in my system. The FES PET scan measures the uptake of estrogen to tumors. No fasting needed!
This first set of scans acted as a baseline. If the drug combo works, the researchers expect to see some change in the tumors' uptake of estrogen, and perhaps a reduction in the size or number of tumors as well. So I will have another set of scans after taking the vorinistat for 14 days, and a third set of scans after taking the aromatase inhibitor for six weeks.
This is a lot of information to take in. Feel free to re-read my explanation. This is the best I understand the whole process.