Mets Day 916: Back to NIH

Today I had a follow-up appointment with Dr. Apolo and a half-dozen others. Apparently my reputation precedes me: as I was giving my history to the fellow who was doing the workup, he mentioned that he was aware of my blog. Maybe it was in my chart, or maybe they've been told to be careful what they say, because it might be published online. The fellow carefully questioned me about my emotional state, trying to find out if I was depressed or sad or angry. He said that 80% of mets cancer patients displayed symptoms of depression. He didn't believe me when I said I wasn't depressed, which made me sad.

Eventually he left and came back with Dr. Apolo and her supporting cast, which included two other NIH doctors, the fellow, a medical student, and a doctor from the FDA who was reviewing proposed clinical trials for mets bladder cancer. Dr. Apolo said that my labs looked fine, and the Lovenox levels were good. She strongly encouraged me to stay on Lovenox for 3-6 months, noting that I had quite a few clots and a rather large and long clot in my hepatic portal vein. We agreed that I'd continue with the twice daily injections until at least Nov. 18, when I am scheduled to have another CT scan, and we'd see how things look then. She had the fellow order me another 21 days worth of Lovenox, which would give me a total of 7 weeks. After admiring my massively bruised love handles, she said that I could also inject the front of my belly (something the NIH nurse said last week that I shouldn't do), and could also give injections into my thighs and arms if I wanted. She also said to avoid contact sports, so I guess that rules out the annual Turkey Bowl football game.

Dr. Apolo said that she had carefully measured my nodes, compared them with the prior scans, and had concluded that me nodes were neither growing nor shrinking, but were stable in size. She also said that the two largest nodes were adjacent to each other, but were sufficiently distinct so that she could not combine them for purposes of clinical trial eligibility. She drew a picture of the two nodes, and explained that they were arranged like a comma, one above and slightly offset from the other. She also said that the scan had picked up a number of other lymph nodes around my left clavicle and upper torso, but none were enlarged enough to be of any clinical significance.

Thus puts me back into the same situation I've been in since I ended my chemotherapy: watchful waiting. We all agreed that the best case scenario would be that my nodes never increased in size enough to pass the threshold for entry into a clinical trial, but if and when that happened, we'd deal with it at that time.

Speaking of clinical trials, I told the FDA doctor that I'd really like to see a new drug approved for use on metastatic bladder cancer, since it had been more than 20 years since the last drug had been approved. He was well aware of that fact, and said that the FDA was fast-tracking investigations into the PD1 and PD-L1 drugs. Dr. Apolo seemed to appreciate my blatant lobbying, but then again, I have a vested interest.