I was certain this scan was going to show improvement. Yeah, based on my symptoms (no cough, only a teensy little wheeze) that I was responding.
Sigh. Dr. Lin called today after reviewing the scans and she feels that overall there may be some stability. But that there are some small spots that actually seem to be larger.
Not the news I wanted considering the side effects of treatment. My mucositis refuses to stand down even with the addition of morphine (not a mouthwash as I had originally thought, but an elixir). At the moment I have one very large sore under the right side of my tongue and four smaller ones on the left. Eating is a formidable challenge and I have lost about ten pounds since starting the trial. So we are going to delay infusion by a week.
Of course I asked about other options, given the lackluster response. We could return to the previous plan, lorlatinib plus a MEK inhibitor. That trial has yet to open but rumor has it it still will and soon.
So I guess DS-1062a might not be the drug for me. Again, damn.
In the meantime all I can do is keep trudging forward while trying to keep it all together. Physically, emotionally, spiritually.
This is tough–really tough.
I had CT scans and an echocardiogram at MGH yesterday. This time everyone was wearing masks. I had brought an N95 with the little plastic respirator, and while I was in the waiting room (alone), a nurse came out and explained to me that although my mask would protect me, if I had coronavirus it would not protect the health care workers (air flow in and out). So she brought me out two surgical masks and asked me to put them on instead. However two made me a little panicky, as it was difficult to breathe, so I removed one of them.
Evidently I made it out of MGH just in time, as shortly after my departure five explosions rocked the street—not a dumpster fire (!) but rather manholes that were on fire. If it’s not one thing, it’s two. Or five.
Tomorrow I have another infusion scheduled. Unfortunately my mouth sores have not healed–a less than ideal scenario. However we will be going down in dose and unless the CT scan indicates otherwise, it is my sense that my cancer is responding to treatment. I would like to get the mucositis/mouth sores under control, but even if I can’t, I feel it is best to get a few more doses under my belt.
I’ll let you know what those scans say…