I reluctantly flew back home on Tuesday night, leaving a crying Rose who did not want "Bampa" to go. I'd so enjoyed the time that I'd been able to spend with her, as well as with Lily, and Chelsea and Josh. But my next infusion was scheduled for Thursday, and in some ways my life depended upon my getting home.
While I was in Utah, we learned that our lake house had sustained severe damage as a result of water damage and subsequent mold. For reasons no one can explain, the water filter in the fridge developed a crack, letting water cascade through the fridge and out the bottom, where it spread throughout the first floor as well as seeping throughout the basement. The carpets throughout the house were soaked, as well as the upholstered furniture, and every surface was coated with mold. The house interior will have to be gutted down to the studs, dried, and treated until it is certified to be mold-free, then rebuilt. All the furnishings will be trashed. Fortunately, all of the expenses will be covered by our homeowner's insurance; State Farm already has agreed to extend coverage, and remediation is underway. I'm driving down there tomorrow to meet with the claim adjuster and project supervisor. I guess this means that we won't be able to use our house this summer, but after it's done, we'll probably put it on the market as essentially be getting a new house. It's too bad we didn't get around to selling it before this happened, but we'll deal with it.
If that wasn't enough, while I was in Utah another water leak started in our Great Falls house. The toilet supply line valve in one of the upstairs bathrooms started leaking, staining the kitchen ceiling. My homes are like my neobladder, I've decided. I should expect unexpected leaks. Jennifer shut off the toilet water line and added it to my honey-do list. It's good to have a purpose in life.
After I landed at 1 am yesterday morning, I got a few hours of sleep, then went to the downtown DC Labcorp for my blood work. (I went downtown because I needed to make my monthly appearance at my law firm, and assumed that the Labcorp was staffed by competent people.) I found the lab receptionist to be deeply engrossed in a conversation with another employee - something about how all men were jerks - and kept me waiting for about 15 minutes before acknowledging my existence. She demanded for my doctor's orders and huffed when I said that they were already in their system. She wearily dragged her hands six inches to the keyboard and glared at the monitor, occasionally stabbing at the mouse. When she located my orders, I asked her to confirm that the lab would be able to do the blood work that day, as the orders were marked "stat". She stared at me as if I had a massive zit on the end of my nose, then without looking at the monitor said that my orders were not marked stat. I explained that I knew that they were, as they were standing orders, and I had gone to other Labcorp locations on the same orders with no problems. She stared at me again, then summoned her fellow employee to look at the screen. No, said man-hater number two (barely glancing at the screen), she could not see "stat" in the orders. They could draw my blood, they said, but it would not be analyzed for a couple of days. Realizing that there was nothing I could do persuade these good people otherwise, and not eager to subject my veins to vicarious revenge on behalf of women everywhere, I decided at I would just show up early to Hopkins to have my blood drawn by people with a semblance of professionality. Moral: never again go to the Labcorp location at 1145 19th Street NW.
The downside was that I had to fight my way through rush hour traffic this morning, with it taking two hours instead of the usually hour to get to Hopkins. The horror! Fortunately, my port immediately gave a return, and the blood draws were quick. Unfortunately, the Hopkins lab was backed up, and so I had to wait an extra two and a half hours for my nivolumab dose to be compounded at the pharmacy.
Meanwhile, I met with Dr. Hahn. He introduced me to another doctor who was visiting JHUH, and called me the "poster child" for the nivolumab clinical trial. I thought of the "Save The Children" posters and thought his description was spot-on. I asked what new things he learned at ASCO about the durability of nivolumab on metastatic urothelial carcinoma. He said that no new data had been published specifically on that point. There was newer data on nivolumab on metastatic melanoma, which showed that the survival curves that had been published last November were essentially unchanged. Dr. Hahn said that he expected that the survival curves to be similar for patients with metastatic bladder cancer, i.e., of the 60% or so of patients that had an overall response, about half could be expected to have a durable response lasting for several years. But accruing that data will take some time, especially since nivolumab was first administered to mets BC patients less than 12 months ago. But the recent sea change in how doctors are now classifying cancers (by genetic type instead of location) means that the data from metastatic melanoma patients and non small cell lung cancer patients can be more readily applied to urothelial cancer patients like myself.
Dr. Hahn added that, with regard to durability, data would accrue as patients getting nivolumab stopped getting doses, then restarted when their cancer started growing again. He said that the trial sponsor had been granting permission to some patients to "go on holiday" from therapy, with the understanding that they would go back on if their cancer came back. Now that the drug has been approved by the FDA for melanoma and NSCLC, more patients would be getting shorter doses of the drug (probably due to cost concerns), and that data would provide insight as to both how long I need to get betting this drug, and how long the effect will last. Good news, I guess, but I have little interest in discontinuing the trial prematurely. The plan is that I will continue to get my infusions every other week for quite a while - maybe into 2017.
Dr. Hahn also talked about how the next exciting area of
research was using combination therapy, such as GemCis chemo and
immunotherapy, at the same time. He also mentioned how there were so
many genetic mutations that we did not yet know how to treat, and
expected that more immunotherapy drugs would be developed to target the
damage done by those mutations. I could sense his enthusiasm and
excitement at those future developments.
At 3 pm, the pharmacy finally sent up my nivolumab, and the stuff was pumped into my body. By 4:15 I was out the door, just in time to sit in rush hour traffic out of Baltimore and on the beltway on the way home. I am richly blessed.
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