The news is…. a whole lot of ok. Good and, well not BAD, but not what I wanted and presenting more unknowns. It could end up being good, but it could also turn out to be terrible. Welcome to my life.
First, the good news: Not only is the disease stable, there is some shrinkage in the size of the biggest tumor, the one they use to measure growth. It went from 3.9 centimeters to 3.4, which is amazing, considering this drug is not a shrinker, just a stabilizer. I’m hoping this trend continues, despite the other 50, which is the change part.
I’d never heard of Amylase before this year. It’s funny (not “haha”) how your vocabulary explodes with cancer words once you or someone you know is diagnosed. Amylase is an enzyme that helps with the digestion of carbohydrates. I am tested for Amylase and Lipase levels every two weeks in this trial. How does Dr G know to test for this? That’s a big brain question that I can’t answer. My Amylase level has been high-ish pretty much this whole trial. This time, the decision was it’s too high. So Dr G held my meds after one day of this new drug cycle. My Amylase level was tested in labs in Salt Lake, Park City, San Diego, and twice in Washington, DC, but it held its own. Trial protocol means Dr G has to reduce my dose. I find that immensely not awesome. As I said earlier this week, we know 150 mg’s of Milciclib Maleate for seven days keeps the cancer cells in check. Will 100? Everyone is cautiously optimistic, but no one will go out on a limb, which I get.
To me, it’s a big kick in the pants to actually get measurable tumor shrinkage, then have to take less of the drug. More unknowns on the way. I’m kind of used to them, but I’d prefer not to encounter them. I could WORRY about the drug dose not being strong enough to keep the cancer in check, but that’s stupid. Instead, I’m going to consider the potential upside of taking less of a drug that’s not been proven (even though it’s working for me. Meh.).
The side effects are immensely manageable, considering the PHA drug is extending my health and my life. With less of the drug in my system, MAYBE I won’t be nauseated or so fatigued by the end of my seven days on. MAYBE I’ll get feeling back in my feet and my fingers and stop tripping and dropping things. (Have you ever tried to thread a needle or tie bootlaces when your fingers are frozen? Welcome to my clumsy world!) MAYBE I’ll finally be able to stop seeing flashing lights and hearing that annoying ringing in my ears (at least the ringing not caused by standing in front of the stacks at concerts from age 16-40) and gain some traction with my fitness and have my short term memory improve and find a pot of gold at the end of a rainbow.
I don’t have to return to Georgetown any more often, which is a relief, as much as I enjoy seeing my family and eating Ethiopian food. I don’t have to change plans to tour Southeast Asia in the spring. I don’t have to be concerned about anything new for at least six weeks, when I go back for another CT scan. I do get to be home in Park City for all of those six weeks, which I am PSYCHED about.
So really, my 50-50 news could be 100-percent good. I just won’t know for a bit. And in the big cancer picture, if it’s not manifestly (?) negative, it could be positive. I’m positive about that. #Defy. #Livefearlessly. #Alwayslookonthebrightsideoflife.