CR 339: 32nd infusion, lobbying for $$, and more

It's been a busy few days. On Sunday, we attended a memorial service for my good friend Cynthia, who passed away earlier this month 16 days after being diagnosed with a particularly virulent form of cancer. Her death was a sobering reminder of how little we know about to treat cancer, and how different each form of cancer. To speak of cancer as a single disease is like speaking of all humanity as a single life.

On Monday, my youngest son Garrett received his missionary call from the LDS Church. Mormon young men and women are encouraged to volunteer to serve as missionaries, and Garrett has been preparing for some time for his mission. He will depart on July 6 to serve for two years in the Utah Salt Lake City East mission, which stretches from the eastern part of Salt Lake City through Park City and Summit County and into western Wyoming. (A blog with a map is here.) Garrett is relieved that he will not be in a really hot area and will not be exposed to strange foods (although he does not yet know about Rocky Mountain Oysters). He will leave two weeks after he graduates from high school. He's a bit excited and a bit overwhelmed and a bit apprehensive, which shows good judgment on his part.

On Tuesday, I spent the day on Capitol Hill as part of BCAN's advocacy to members of Congress and their staffs. I and others affected with bladder cancer met with the staffs of Virginia's elected officials. We were asking that bladder cancer be made a permanent part of the Congressionally Directed Medical Research Program (CDMRP), and that $4 million from that program be set aside for bladder cancer research. Although bladder cancer is the fifth most common form of cancer in the US (and the fourth most common in veterans), it is only 27th in the level of federal cancer funding. The CDMRP is one of the best ways to ensure federal funding is directed towards this often-ignored disease. After meeting five different staffers who were pleasantly noncommittal, my last meeting was with Senator Crapo of Idaho. To his credit, he immediately understood the basis for our request and agreed to make it happen. That will encourage so much more research and will dramatically advance the understanding of bladder cancer.

Today, I'm at Hopkins. Before my regular appointment with Dr. Hahn, I met with Stephanie Greenberg, who with her husband is spearheading the creation of the Greenberg Bladder Cancer Institute. She said how she was a loyal reader of my blog, and how it had helped her and her husband after he was diagnosed with bladder cancer. I thanked her for all that she and Erwin have done and continue to do in advancing the research and treatment of bladder cancer. The Greenberg Institute is the first in the nation to focus solely on bladder cancer, and Stephanie outlined an ambitious vision to make it happen. We're fortunate to have such an enthusiastic and generous person take such concrete steps to change the landscape around this disease.

When I met with Dr. Hahn, I told him about my meeting with Stephanie as well as Sen. Crapo's promise regarding the CDMRP. Dr. Hahn was elated, since he was working with a number of his fellows on applying for grants. He said that having a dedicated pot of money for bladder cancer research would dramatically help increase the desirability of working on that cancer. "You made may day!" he said.

I also asked about the ASCO abstracts. He said that the data for nivolumab and the other checkpoint inhibitors showed between a 19% and 31% overall response rate. These were of people who had failed chemotherapy, and had no other treatment options. Most were looking at imminent death. From that perspective, the level of response was tremendous. It underscored how fortunate I have been to have had a complete response. Dr. Hahn said that at the ASCO meetings next week, researchers would be discussing the factors of when immunotherapy seemed to work better, including positive testing for PD-L1 and lower co-morbidities. He said that there was a tremendous amount of interest in this recent research, and expected attendance to be standing room only. I told him that I looked forward to hearing more about it at our next appointment in two weeks.

In contrast to everything else, my infusion with nivolumab was routine. Strap me in, hook me up, pump it in. Rinse and repeat every two weeks.

This weekend we'll gather with family and friends at our lake house. Reconstruction is finally done, and we're looking forward to spending the Memorial Day weekend there. We've put it on the market and hope that another family will enjoy the location as much as we have.