I will tell you about the rest of my magical trip to Colorado. I promise. But first, I have to report that stability no longer reigns. I have transcribed some of the radiology report below:
LUNGS: On image number 51 in the right upper lobe there is a 1.1-cm ground glass nodule which has increased compared to November 30, 2010. On image number 57 in the region of the minor fissure there is a 5-mm nodule which is increased in size compared to the prior examination of January 20, 2011. On image number 61 adjacent to the minor fissure, there is a region of ground glass opacity which is mildly increased since January 2011.
The inferior aspect of the left upper lobe nodule which was recently biopsied is mildly increased. For example, on image number 46 a solid ground glass nodule is 1.3-cm (previously 1.1-cm on the January 2o11 examination). On image number 51 in the left upper lobe, there is a 6-mm nodule slightly increased in size compared to the prior exam. A focus of ground glass opacity in the periphery on image number 50 is also mildly increased. An area of ground glass opacity in the left upper lobe image 57 is more solid appearing. End of ground glass opacity in the left upper lobe extending from images 63-97 is increased. For example, on image number 66 there is a region of ground glass opacity which is 4.3 + 2 + 1-cm (previously 3.7 + 1.6-cm). Increased ground glass opacities also demonstrated adjacent to the left ventricle.
PFS, or Progression Free Survival, is one of the criterium used to evaluate the efficacy of a drug in clinical trials. My period of PFS is now officially over, and I could be released from the trial. However, conversations have already taken place between my team and Pfizer. As I still appear to be receiving some positive benefit from crizotinib, I shall continue therapy with it.
I have a brain MRI coming up due to my report of increased vomiting and headaches; I feel it is related to the fact that crizotinb is no longer totally effective. A busy boy is a good boy, and not finding enough suitable targets in my body anymore, crizotinib has evolved into a bit of a bored boy, perhaps engaging in a touch of random mayhem (*not a medical interpretation–merely my own). Dr. Shaw is, however, diligent and although brain mets are unlikely with BAC, they are not unheard of.
My next CT scan will be in two months again and I am to pay attention to my symptoms. For the moment, I have slight SOB, some coughing, and a crackling sound in my left lung upon laying down. I am cognizant of all too familiar changes in my body, yet I don’t really feel sick (sad, yes, sick, no).
As far as possible treatment options; we are now tossing around three. Another potent ALK inhibitor, Novartis’ LDK378, has just begun enrollment for a phase I clinical trial. Studies have been done in the lab regarding my secondary mutation’s responsiveness to this experimental therapy, and it looks to be a good match. There is yet the possibility of an HSP-90 inhibitor or Alimta.
After my appointment I held it all together until I saw Marguerite, the head trial nurse. Then the tears flowed, as Marguerite is the kind of person who makes you feel as if you’ve entered a safe harbor. She hugged me and acknowledged the ‘suckiness’ of the report, but also reminded me that I still had significantly less cancer (perhaps 50%) than I’d had when I’d gone on trial. And now, instead of one wild card option, there were several. Not to mention the fact that I had this incredible team scouting out all the possibilities. Sarah popped in for a hug too and then Irene came in with her accupuncture kit and said she’d ‘fix me up’. I told her I’d take strong and brave. I don’t know if it was the needles or her companionship and conversation, but I was starting to feel better.
Starving, I tucked into my hospital ham and cheese sandwich and better than average tomato soup, followed by a red velvet cupcake made by Marguerite. That cupcake was several mouthfuls of happiness.
And then I gathered up my gear and composure and headed home. And I was okay, until I said goodnight to Peter and he started to cry. Damn.
I tell you what. No matter how ‘routine’ this all becomes, it can still kick the stuffings out of you at times. I will pull it all together, because that is what I do. But today I’m feeling a wee bit of battle fatigue. There is no other way to put it.
life and breath: outliving lung cancer 