CR 658: Another good CT scan

Last week I had another CT scan and Hopkins visit. Ever since I was diagnosed in late 2011, I’ve had CT scans every three months (and sometimes more often). When I scheduled the scan for 8:30 am, I forgot that Kaiser wanted me to drink one bottle of barium contrast 4 hours in advance, and another 2 hours in advance. So I set alarm for 4:30 am, stumbled downstairs and chugged a radioactive banana smoothie. I couldn’t get back to sleep, so I climbed into the hot tub and watched the sky grow lighter with the sunrise. I was struck with a sense of gratitude for the day, and gave thanks to God for being alive.

The scan was routine – no blown veins or exploding connections – and I following the advice of the tech to drink lots of fluids to wash out the contrast, I went to McDonalds for breakfast and 4 liters of Diet Coke. In the afternoon, an oncologist nurse called to tell me that the scan showed no changes from my last scan in January, and no evidence of metastatic activity. Another prayer of thanks.

Early in my cancer journey, I found myself thinking more about a scan in the couple of weeks before it happened. Some patients get so worked up about scans that they have a hard time thinking of anything else. “Scanxiety” is a real thing. I learned to get over it by accepting that I had no control over the course of my cancer, and putting my trust in God. It also helped to realize that scans are imprecise and retrospective: to the extent that they show anything, it’s what has already happened in your body. Getting worried about what’s already happened is silly.

These days, I go into my scans with zero expectations. I have no idea if it will show that my cancer is inert, or growing, or doing the polka. There is no data that I can reference to develop a set of expectations of how long (or short) my current remission will last. In the absence of data, I refuse to speculate, so I mostly don’t think about it. In that sense, my cancer journey currently is an abstraction; a thought exercise. At some point in the future, it is almost certain to smash back into the forefront, grab me by the throat and shake me around. When that time comes, there likely will be nothing I can do about it. But until then, I’m living my life as best I can, grateful for each day.

On Thursday, I went up to Hopkins to check in with Dr. Hahn. I brought a copy of my scans, and we looked at them together. The supraclavicular node where my distant mets first showed up was visible on the scan, but inert. Dr. Hahn said that the scan seemed to slice through it just right to make it show up on the screen, but there was nothing going on with it that he could see. The sites of all of my other tumors were normal.

I asked whether there was any new data on durability. He said that aside from the Bristol Myers release that accompanied the formal approval of Opdivo for metastatic bladder cancer in February (which I had previously blogged about), nothing else had been published in the past 3 months. Bristol Myers continues to follow patients who have had partial or complete responses and stop taking the drug. The company will typically release additional data in conjunction with meetings of oncologists in the US or Europe, such as the Spring ASCO meeting in late May. I’ll be watching for those data, since I’ll be included in the data set. 

I told Dr. Hahn how I still had occasional itching to the scalp, and sometimes around the neck and backs of my calves. I knew that itching was a sign of dermal toxicity, a known side effect of Opdivo in some patients. I asked what the data showed for how long that lasted after patients stopped taking the drug. Dr. Hahn replied that the data was sketchy and incomplete. Some patients saw the itching resolve soon after stopping the drug. Others had it last longer. In a few patients, it had yet to resolve, suggesting that it might be permanent. In my case, it’s very minor – grade 1 at most – and it comes and goes. Sometimes I’ll find myself absently scratching my head or neck. When I get into the hot tub, sometimes the backs of my lower legs sometimes itch. And my forehead and cheeks sometimes show a mild rash. Dr. Hahn suggested that if I find the itching to be problematic, I should consult a dermatologist for a topical cream. Alternatively, I might try Benadryl or Claritin. I’ll monitor it and see how it goes.

After meeting with Dr. Hahn, I chatted with Liz Raymond, a Hopkins employee who is helping launch the Greenberg Bladder Cancer Institute. She invited me to a luncheon at Hopkins on Friday May 19 where Dr. Hahn, Dr. Bivilaqua, Dr. McConkey, and others will be talking about new developments in bladder cancer treatment and the GBCI. Liz said that I might be asked to take a few minutes and share some of my experiences. If you’re in the area and interested, come on by.