Thursday, June 23, 2016

CR 367: 34th infusion, and gratitude

I had my 34th infusion today. The only notable thing that happened was that, for the first time ever, the Hopkins pharmacy had my nivolumab ready a half hour ahead of schedule. I got in and out of there in my quickest time yet.

Dr. Hahn observed that my persistent post-nasal drip appeared to be decreasing in severity. I wonder if the persistence is due in part to the fact that I've been on an immunotherapy treatment for 16 months. Dr. Hahn and the clinical trial nurse asked if I had though about whether I wanted to suspend my therapy early (an option being offered by Bristol Myers to those who have had complete responses), and I said that I'd prefer to keep riding that horse. If I start to have more significant side effects or of there is some evidence that I should suspend treatments, I'll consider it, but that hasn't happened yet.

I told Dr. Hahn how I'd reviewed some additional studies on checkpoint inhibitors: Systemic therapy in muscle-invasive bladder cancer: current trends and future promises, by my clinical oncologist, Jeanny Aragon-Ching; Novel therapeutic targets in advanced urothelial carcinoma, out of France; and the Atezolizumab study that lead to its approval for patients with metastatic urothelial carcinoma, by a large group of doctors, including Dr. Dawson of Georgetown (I had seriously considered joining that trail in early 2015). I was looking for more data on durability of results, and the best information was in Table 1 of the Atezolizumab study. For patients who had complete responses, the spider plot suggested that the patients who hit 16 months of disease-free progression are less likely to relapse. Hitting the 24 month mark is even a better predictor. Dr. Hahn agreed with my reading, although he cautioned that we still did not have sufficient data to make valid statistical projections.

These data are slowly persuading me that I might not be spitting into the wind when I think about making plans that stretch one, two, or three years into the future. I'm not comfortable with thinking any farther into the future than that, but I'm beginning to get my head wrapped around the idea that I might be alive in the summer of 2017, and there is a good chance I might be alive in the summer of 2018.

This past week my youngest son has graduated from high school and taken several key steps in preparing to depart for his two year mission for the LDS church. I have felt a particular joy as each event occurred: I did not expect to be alive. That I am is not attributable to anything I have done, but rather to the skill of the health care community and the grace of God. And for that, I am continually grateful.

2 comments:

  1. Hi Ken. I've just begun reading your blog. I've read your first few entries and this last one, and plan on getting through the rest this week.

    On Tuesday I had a TURBT for a 1 cm bladder tumor. It's high grade, muscle invasive (muscularis propria) with micropapillary features. I'm a 56 year-old female with no risk factors either.

    I had a full body PET/CT scan done on Friday but won't get the results until tomorrow. It doesn't seem to have spread locally, but won't know for sure until tomorrow and won't know about distant metastasis until tomorrow either.

    Thank you for this blog and all the info. I will be following you and wishing you the best.

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