I tend to be proactive and would decide on not to wait for my doctors, so I sent the following questions to my doctors at Hopkins, Kaiser, and NIH:
1. What would you set forward my next steps to be?
2. Does it make sense to do a biopsy of the left supraclavicular lymph node? If so, should that be a JHUH, Kaiser, or NIH?
three. What is the most productive type of genetic testing that will be done on the tissue to inform a higher therapy?
four. Should I go again on nivolumab immediately (either through the clincial trial or, since or not it's been approved, outside of the trial protocol), or await testing, or settle for as true with a novel therapy such as Dr. Apolo's cabo/nivo/ipi trial?
It looks like I'll have a period of uncertainty ahead.