Niolumab 3, Biopsy 0

Less than an hour after I sent my emails yesterday to my dream team of oncologists, I received a call from Dr. Apolo. She said that in the past week she had reviewed by current CT and PET scans, compared them to my CT scans of the past 4 years, consulted with NIH's interventional radiologists, and had just spoken with Dr. Hahn. She concluded that my new tumor was in a different location that my first supraclavicular node mets tumor that was first observed in mid 2013, biopsied by NIH in September 2014, and which disappeared as a result of my nivolumab therapy in 2015. The new tumor is deeper in my chest, near my trachea, and nestled in between the internal and external jugular veins and aorta. The new tumor shares the same lymphatic drainage as my first supraclavicular tumor. She said that it is 98% likely to be metastatic bladder cancer; the other 2% is that it is a different type of cancer. Her interventional radiologists confirm that it is too risky to biopsy with a guided needle. She and Dr. Hahn both agree that the risks of performing a surgical biopsy outweigh the diagnostic benefits. She and Dr. Hahn agree that I should immediately restart immunotherapy, preferably nivolumab, and see if the tumor responds. If not, then I can investigate my clinical trial options. I asked her whether I should stick with Hopkins, or get immunotherapy closer to home. She said she'd recommend keeping it as simple as possible. I thanked her for comprehensive review and advice. 

Later in the evening, Dr. Hahn emailed, "Given what you have described from your physicians at Kaiser, I would recommend foregoing the biopsy and restarting nivolumab. If we can do that through the study, then great.  If not, then treating you with any of the now FDA approved PD-L1/PD-1 agents would be ok too." The Hopkins clinical trial nurse is in the process of verifying whether I can resume treatment as part of the ongoing study by Bristol Myers Squibb of the drug. Now that nivolumab has been approved by FDA for metastatic bladder cancer as a result of the data from the clinical trial in which I participated, however, I don't have to be in a clinical trial to get the drug.

Today I received a note from Dr. Ferrera, who also agreed that the biopsy was too risky. She has put in orders for me to resume nivolumab therapy starting on Monday May 14 at the local Kaiser Permanente office six miles away from home. No copay, no extra costs, no commuting to Charm City. That's convenient!

Based the unanimous vote of my doctors, my Plan E is that I'm going to resume my infusions with Opdivo after an 18 month break. I'm not sure how long I'll go, but expect it will be for at least 6 months. I hope that the drug works as well this time as it did before.