I am adrift. Not emotionally, not metaphorically–really, truly at sea.
First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.
And then, more importantly, my health.
Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.
As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.
Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.
Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.
I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.
Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.
xo
life and breath: outliving lung cancer 