I don’t know what you thought when you read the title to this post. After I wrote it and looked at it, I could see how it could be misinterpreted. It’s slightly alarming. But my real life case of “Where are the Whites?” is pretty darn alarming to me. Almost alarming to the scale of how I felt when I couldn’t find a clinical trial. The whites I am missing are white blood cells (wbc’s). Because after 25-years in television, bad news trumps good news, so that’s what I gave you first. That’s the headline, here’s the story.
I went into my third National Cancer Institute visit feeling good. I still have no symptoms (again, whatever they are) of the tumors that are growing between my lungs and my rib cage. And my CT scans showed that there was minimal tumor growth since my last visit 5-weeks ago. I got another one-month reprieve from starting the trial (really, it was 5-weeks, but I cut it short so as not to have to cancel my snowcat ski day in the Uinta Mountains. Last time, I went at 5-weeks instead of 6-weeks so I wouldn’t miss Sundance. You have to fit life in.). Then, my NCI team told me that had I needed to start the trial, I couldn’t have. My wbc count was 2.6 and I need 3.0 to get in. As I was told in the very beginning, the numbers are immovable objects. Even though the doc said that to him 2.6 is 3.0 and he wouldn’t expect any difference in how the meds would affect me, he can’t make exception. Holy. Cow. If I come back next month and need to start the trial and my whites haven’t reappeared, I’m probably out. I could still get Sutent, which is probably the trial I’ll choose, but only under compassionate use by the drug company, or by paying the price, which is about $100,000. A YEAR. Dr Rajan says they’d help me get the drugs here in Utah and still come back and be monitored in Bethesda, but I would officially NOT be in their trials program. If my wbc’s don’t get over that 3.0 mark, I am back in the same boat I was in in August, but with 6-months more tumor growth, as minimal as it is.
These are the blood test mitigating factors I am throwing out: I had just gotten over a pretty bad cold and sinus infection and had finished 10-days of antibiotics the day before my blood was drawn. Also, because having a deadly disease apparently isn’t enough work, I have a pinched nerve in my neck and had taken Prednisone a week or two before. I never eat enough protein. I have been a slacker about exercise for about a month (hard to believe, I know, but believe it).
For the next month, my goal is to rally the whites. I am taking Folic Acid and extra zinc, counting protein grams, and drinking a lot of citrus. I am bumping up moderate exercise to daily and not counting skiing as exercise. I may or may not get blood drawn in a couple of weeks to see how the whites are doing. Or I may not, as it doesn’t make any difference.
I’m also reconsidering other options again. That’s a tough one, because my NCI doc is pretty convinced that the Sutent is my best bet to extend my life. But today, anyway, my preference is to stay in the NCI program, even if it’s a different trial. I don’t have to decide anything today or even next week. I’ll just keep doing what I do til I return to Bethesda in February. In the meantime, the Sundance Film Festival starts tonight. If you need me for the next ten days, you’ll probably find me on a red carpet before a movie premiere somewhere.