CR 323: CT, 31st infusion, radioactive biceps

The past two weeks have really sucked for reasons unrelated to my cancer. Last week, one of my best friends died 16 days after being diagnosed with leiomyosarcoma. I'm still dealing with her loss and likely will write about Cynthia when I am in a better state of mind. But meanwhile, I find some comfort in the monotony of my ongoing infusions with nivolumab.

During my 30th infusion two weeks ago, I apparently picked up a virus from the hospital. The next day I woke up with a sore throat. It soon blossomed to full head cold, with congestion, cough, runny nose, etc., but no fever, chills, or lung congestion. It's been difficult to shake. Two weeks later I still have post-nasal drip and am coughing up phlegm.

I get CT scans of my neck, chest, abdomen, and pelvis every 12 weeks as part of my clinical trial. Kaiser has agreed to do those scans as part of its ongoing cooperation with Hopkins. So last Tuesday I went to Kaiser's Tyson's Corner facility for my scan. They usually don't access ports for scans, so the tech placed an IV in my left arm. When he started to push the contrast into my vein, I immediately felt pain and hollered for him to stop. He had blown my vein and was pushing the barium into my arm. So he switched arms, placed the IV, and started the pump. The same thing happened. By this time, he was visibly upset with himself. Rather than have him blow a third vein, I asked that he get the senior nurse in to do the job, which she did. I asked about the contrast that had been pumped into each of my arms, and she said to not worry, it would soon be absorbed. Meanwhile, she said with a smile, I would have radioactive biceps. It was the nicest thing anyone had said about my physique in some time.

The results of the scans, by the way, was nominal. No change from the last few scans. I have a few nodes scattered around my chest that are visible on the scan, but none are of pathological significance. No new growth, and no sign of metastatic activity. Hurrah for Opdivo! Hurrah for Bristol-Myers Squibb!

Last Saturday was the annual BCAN walk. This is the fifth year that there has been a Team KBROS at the walk.  Because I was focused on helping Cynthia and Walter as much as possible, I was unable to send out any emails asking for donations, so the only contributions were the result of word of mouth. So here's your chance: click on the link and donate now. (I'm looking at you, mom!) At the walk we brought Nephi, our standard poodle, and put him in an orange t-shirt which we found made him a magnet for anyone with a camera. The skies cleared for the firs time on weeks, and we enjoyed a nice stroll around our national mall. Dr. Apolo, who I credit with saving my life by getting me into this trial, spoke of the exciting advances in research. She spoke how the FDA (which had employees in attendance) was soon likely to approve new therapies for bladder cancer. When that day comes, it will be the first new drug approved for metastatic bladder cancer in over 30 years. It's been too long. And there is such a long way to go.

When entering Hopkins today, I was handed a mask. All patients, visitors, and employees are being asked to wear masks. Apparently a virus has swept through the hospital, and they are trying to manage it. I told Dr. Hahn of my ongoing congestion, and he ordered a rapid influenza test. A video from 1990 shows how the test is conducted. Yeas, it's that bad. In the infusion wing, I was placed into an isolation room pending the results of the test. I prefer the peace and quiet instead of hearing the latest inane daytime shows on another patient's TV. Why people don't bring and use earphones is just another example of either lack of awareness or selfishness.

Speaking of Dr. Hahn, I confirmed with him that the results of my specific clinical trial cohort would be published on May 18, and discussed at ASCO on June 5. The report is titled Efficacy and safety of nivolumab monotherapy in metastatic urothelial cancer (mUC): Results from the phase I/II CheckMate 032 study, and is Abstract 4501. This report is limited to the monotherapy arm of my trial, e.g., patients who just received nivolumab. I'm curious to find out the ORR, PR and CR rates. The data for the patients who received combination therapy (nivolumab and ipilimumab) have not yet been compiled and will not be released this month.

I also was told that Stephanie Greenberg wanted to meet with me the next time I am at Hopkins. She and her husband, Erwin, recently donated $15 million to Hopkins to create the Johns Hopkins Greenberg Bladder Cancer Institute. Apparently she has been following my blog. I won't be able to make it to the dedication ceremony this Saturday, but will look forward to meeting her. I am grateful to the Greenberg's generosity, as well as the dedication of all of the health care professionals who continue to work in the bladder cancer community.