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.
So, I’ve been busy jumping through hoops. Consent form signed. Labs taken. EKG and ECHOcardiogram performed. Eyes examined–that was a big if–but my retinas look good. All that is left is a brain MRI–which should not pose any issues.
A week from today I shall have my biopsy. The following day, I am to start the trial for Lorlatinib in combination with TNO155–a SHP2 inhibitor.
Had I not been to this particular rodeo so many times before I might be anxious. Or maybe a little bit excited. I am neither. What I am is tired. But also hopeful.
I had a zoom meeting with Dr. Jessica Lin and Dr. Alice Shaw today to go over my scans. And…despite the fact that I am feeling more symptomatic, everything looks relatively unchanged from the previous scan six weeks ago.
However, Alice assured me, I know my own body and she takes my assessment seriously. Bottom line, this likely represents slow progression—too subtle for scans that are spaced six weeks apart.
The plan is to wait two weeks for another infusion of DS1062-a. Ideally I would have at least one more infusion after that, but once again after four or five weeks rather than three in the interest of side effect management.
Then we would reassess. Of course, I always want to know what my future options are. I am happy to report that there are two, a virtual wealth. First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, (G1202R, S1206F and G1269A) Alice feels my cancer is still primarily driven by ALK–the secondary mutations representing an effort to get around ALK inhibition. Hopefully a combo will cover enough bases.
I would characterize this as good news. I already knew my cancer was progressing but I am reassured that the progression is slow. And I like the sound of two options vs one. Better yet, should I have to begin with the MEK inhibitor/lorlatinib, it will not preclude my enrollment in the SHP2 trial.
So there you go. Business as usual. I still have cancer. But I also have options.