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.
life and breath: outliving lung cancer 
Hey lung mirror-twin – I too asked my oncologist and 2 surgeons (one up there at DFI) about removing what’s left of my right lung and nobody was in favor either. I was told that due to my age and pleural involvement, I might not survive and/or would be an arduous recovery.
Good luck with the trial! Sinding positive vibes your way. I don’t even have the opportunity for any clinical trials because I do not have ANY genetic mutations. Not. Even. One.
And Karen, that sucks. Where is a genetic mutation when you need one? Big hugs and lots of love.
Linnea
Lin,
Sean Here.
I do not respond much but read nearly everything you write. You most likely would not know this but I grew up with a father in a similar situation. It was MS and the worst kind but his will to fight is the same I see in you and that fight has always lived in me as well. I do not have any French words for you but Fight On!
Sean G McHugh,
Cell 303 906 3152
sean@medexec.com
https://www.linkedin.com/in/sean-mchugh-86bb391b
Merci Sean! Fight on it is!
Linnea
Hi Linnea
I had my right lung (and various other bits and bobs) removed 9 years ago. While recovering was hard, QOL after 6 months was enough to divorce my ex and start online dating. Definitely recommend it over dying. Happy to answer questions on it as it isn’t a procedure practiced very often these days. Juliet
I love it Juliet and I am with you–if it can be avoided, it would seem better not to die. Better yet, to start online dating six months later 🙂 Thanks for the words of encouragement!
xo Linnea
You have gone through so much! However you’ve rallied forward more times 💗 I have been following since 2010. Your strength of spirit is amazing!
I’m sending all positive strength your way in this ongoing battle we share. You’ve educated all of us well on the process. I know you continue to fight. That IS in your DNA.
With much love ❤️
Gwen