If my life wasn’t on the line, this could be a fun game. Perhaps I will try to keep that thought in my mind as I roll the dice with each medical decision I make. That’s the best idea I’ve had today, although my selection of chicken enchiladas for lunch was a close second.
Throughout the last 14 months of my chemo adventure, my immune system as been “immune” to the assault on my white cell blood count, neutrophils and platelet count. I have been very pleased with this situation. But the game is a little different with my current chemo agent, Lonsurf. My crack research team, consisting of Little Lee and Cotty the cat, discovered from reading Lonsurf’s trial data that those patients that exhibited severe neutropenia got the best results in extension of life. Neutropenia is low white cell and neutrophil count. Just as with the levels of cancer, there are four stages of neutropenia. Stage IV is the worst with regard to susceptibility to life-threatening infections, but stage IV neutropenia is the best condition for effectiveness of Lonsurf’s ability to extend life. There are shots (Zarxio for the curious) they give to patients with stage IV neutropenia to protect against infections and yes, I will start those tomorrow if the stupid insurance company gets off their ass and approves it in time.
So…before Lonsurf I had no neutropenia. Once I began Lonsurf I developed a low-level stage II neutropenia and it stayed that way for two months, no movement at all in my bi-weekly blood tests. So as I approached my PET scan and visit with Dr. P today, Lee and I were anticipating less than great news. We were hoping for stable disease with little or no growth in the tumors. What we got was robust growth and activity in most tumors with shrinkage in a few. But here is the kicker. Six days ago my blood test showed stage II neutropenia. The draw I took yesterday showed level IV neutropenia. Keep in mind that there hasn’t been any chemo for two weeks and the low point of the cycle should have been last week’s blood test. I don’t get it. The good news is that there are no new areas of cancer activity. It is still isolated to lungs and liver. So things could be worse, but the big picture remains the same. For those who may be new to this blog, my estimated life span was two years or less from diagnosis and I am at sixteen months. Lonsurf could potentially give me another five or six months. Time is a precious commodity as immunotherapy ( a potential cure) is still in the trial stage for colon cancer.
Lonsurf is a new drug, out for less than a year, and it takes time for the medical machine to figure out how it really works on regular folks as well as special people like me. What a fun game! Now that I have had disease progression, the first instinct is that Lonsurf is not working. But I’m thinking maybe that’s because I only had stage II neutropenia. Now that I have stage IV neutropenia are we are going to get some action out of the drug? Dr. P thinks that theory might be right if the disease was stable over the past two months of treatment, but not likely in this case since the tumors have been thriving during treatment. But he doesn’t know because there is no data that supports either theory. So, let’s roll the dice and see what happens. From my view, I’m playing with the house money at this point.
The current plan is to continue Lonsurf for a while. Instead of a monthly CEA (cancer marker) blood draw, have a weekly CEA with a CT scan in a month. Meanwhile he is also referring me to the University of Arizona Cancer Center to see if there are any suitable clinical trials. Other than clinical trials, there are no treatments that make sense for my particular cancer situation. Who knows, maybe this visit to the U of A specialists has the potential to turning me into an Arizona Wildcat fan!!!
So not a lot of good medical news today, but I do feel and look good. I’m sleeping well, eating well and, of course, drinking very well 🍷. Lee and I are painting up a storm, having fun with friends and looking forward to visits from friends and family from afar. In other words, we are living life to the fullest. Thank you all for your support, it has and continues to make a world of difference to Lee and I.
And now, please meet Gus.