I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial). There are no words.
But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome.
Secondly, the transcript of an interview (conducted by ALK Positive, who also provided funding for this research study) with my oncologist Dr. Jessica Lin as well as Dr. Ibiayi Dagogo-Jack–the Principal Investigator for this trial.
Not gonna lie, my chill facade crumbled yesterday as my anxiety went through the roof. I had labs–‘skidding into scar tissue’ was the explanation the phlebotomist gave as she poked me for the second time, and a brain MRI, and as I lay in the scanner I had to laugh (so as not to cry). There is little less soothing to frazzled nerves than the percussive cacophony of a brain MRI.
I’m feeling a little calmer again today. And super hopeful that the fact I responded to MEK inhibition combined with lorlatinib may make me more likely to also respond to SHP2 inhibition.
What I’m not looking forward to are the side effects.
C’est la vie.
I am absolutely clear as to what my goals are. As evidenced by a text discussion with Alice per the possibility of removal of what’s left of my left lung (an avenue I am also exploring). Neither of my oncologists are fans, and as Alice explained, she was concerned both about my ability to tolerate a pneumonectomy as well as the negative impact on both short and long term quality of life. My response? ‘Yes–understood. But I am also facing death–impossible to recover from. No reported QOL.’
La vie. Mine. Which I am enormously attached to. And therefore will do almost anything to hang onto.