Mets Day 1098: 5th Opdivo infusion; 3 year mets milestone

Today I spent another fun-filled day at Johns Hopkins for my fifth nivolumab infusion. The nurse was unable to get a blood return through my port, despite fiddling with it for nearly an hour. She turned me over to a tech for a regular IV. The tech missed on her first stick attempt, then missed on the second. She switched arms and promptly blew my vein on her third attempt. I suggested that perhaps someone else try, and she turned me over to a nurse who finally drew blood. Since the lab needed 3 hours to prepare my infusion, I was assured at spending the whole day at Hopkins. Fortunately, my good friend Cynthia came up with me, and we passed the day in conversation.

In the interim, I visited with Dr. Hahn. He said how three new patients had mentioned my blog regarding the nivolumab clinical trial and wanted in. He was delighted that word was getting out, and was happy with my evangelizing. I should send him a bill for my time.

I asked if he had further thoughts on the duration of my getting the drug, should I achieve complete recovery (CR). He said that it was not something that was spelled out in the clinical trial documents, but rather was an issue to be decided between patient and doctor. One view was that patients should continue with therapy if it appeared to be working and doing no harm. But once a patient has achieved CR, there is no reliable way to measure whether there is ongoing benefit to receiving the therapy. So the other view was that, if there was no way to measure whether the therapy was working, it should not be continued.

Since there is virtually no data on whether patients with metastatic bladder cancer continue to benefit by receiving nivolumab after CR, there is no informed basis to make a decision one way or the other. Dr. Hahn suggested that the drug company might not want to discourage patients from ending the use of the drug, since (once approved), continuing patients on the drug meant more revenue. But he added that data would accrue with what happened to patients who elected to stop taking the drug as opposed to those who stayed on it. He added that it would be useful to know whether the sponsor would allow patients who went off the drug to start again if their tumors returned. He said he would check on that. But first, we need to get to CR.

As usual, the actual infusion was straightforward. The clinical trial nurse suggested that I can avoid the long wait if I have my lab work done at a local lab the day before. I'll taker up on that, I think.

Meanwhile, yesterday was the third year year anniversary that I learned that my cancer had metastasized outside of my bladder. The Kaplan-Meier survival curve for metastatic bladder cancer is grim. The NCI publishes measures of cancer survival using its SEER software, and probing it for mets BC data is depressing. Suffice it to say that historical data show that, five years after a mets diagnosis, fewer than 10% of patients are alive. In fact, a 2011 British study found that fewer that 25% of patients diagnosed with T4 bladder cancer were alive 30 months after diagnosis. So my hitting the three years mark is reason to celebrate!

More importantly, these data are historical. They do not take into account the development of immunotherapy treatments such as nivolumab or MPDL3280A. I'm hoping that these new drugs are game-changers, and five years from now we'll be celebrating a much higher survival rate which, God willing, will include me.