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.

CR 353: 33rd infusion and another head cold

Yesterday morning I awoke with my sinuses full of mucus. I think I've had more colds while on this Opdivo therapy than pre-therapy. And the colds seem to last longer and are nastier. The drug does mess around with my immune system, after all, so side effects are to be expected. The most common side effect still is an itching scalp. Sometimes the rash appears on other parts of my body, then dissipates. Given the choice between having metastatic tumors growing throughout my body, or an itchy scalp and occasional colds, I'll choose the latter. As the great troubadour Joe Walsh said, I can't complain but some times I still do.

Dr. Hahn listened to my chest and sent me upstairs for a chest x-ray. He wanted to rule out anything related to the Opdivo, so he ordered a chest x-ray. I asked if he had learned anything new at ASCO, and he said that the news was very encouraging regarding immunotherapy with checkpoint inhibitors. He told me that about 24% of patients were seeing partial or complete responses, with about 2/3 of that group having complete responses. Another 20% or so had stable disease. In other words, about half of all patients who had failed chemotherapy and had active metastatic growth had seen the progress of their cancers stopped or reversed due to immunotherapy. That's significantly higher than I had understood the data to show.

Dr. Hahn also said that the trial sponsor was interested in learning how patients who had complete responses fared under three scenarios: (1) completing the two-year trial, going off treatment, and seeing what happens; (2) suspending treatment earlier than two years and seeing what happens, with a guaranteed right to resume treatment if the cancer was to return; and (3) continuing treatment indefinitely. The default is option 1. Option 2 is available to me if I am interested (not really). Option 3 will be considered at the end of the two years, and is subject to the agreement of the drug maker. I appreciated his letting me know there were multiple options available to me, and it reinforced how proactive patients in clinical trials need to be.

We talked about what might happen after my trial ended and if my mets came back. Dr. Hahn said that there was no published data showing how mets BC patients fared in that event, but anecdotal evidence from other types of cancers suggested that a resumed round of immunotherapy might again slow or reverse the cancer growth in some patients. I likely could resume taking Opdivo, or as Dr. Hahn noted, since the FDA recently approved atezolizumab (aka MPDL3280A, trade name Tecentriq) for bladder cancer, I could take that without entering another clinical trial. Hopefully I won't need to cross that bridge, but it's good to know that new options are opening up.

With respect to the durability of my response, obviously the longer I go on the trial without relapse, the better. But for future prognostication, Dr. Hahn agreed that if I can hit the two year mark (March 2017) with no relapse, it bodes well for a more durable response. If I can hit the three year mark, then my odds of having a more durable response increase. In the absence of data showing longevity (I am part of the still-forming data set), I'm just taking it one day at a time.

Meanwhile, my youngest son is hitting his own milestones with senior-related events, his looming high school graduation, then imminent departure on his mission. I am grateful that my life has been spared so I can be with my family for these events. In the early days of my diagnosis, I doubted that I would live this long. It adds a certain sweetness to what might be an otherwise hectic time to appreciate how special each day really is. I am a happy man.