Well damn.

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.

15 responses to “Well damn.

  1. Stay strong. Your words and fight through all of this are truly INSPIRING!

  2. Yes! and I have every faith in you and your amazing support and care system that you will continue to succeed!❤️✊🏼

  3. double damn! Sounds like it did help a little, though, despite multiple places with progression. I’ll hope you can stretch it til your next line, whether via trial or simple off-label Rx’s (I think there is an FDA approved-for-Rx MEK inhibitor now).

    Best hopes,

    Craig in PA

  4. 🙏💖

  5. Keep trudging along .. Keep on keeping on as they say xxx

  6. Mary Wasserman

    We’re trudging forward right at your side, Linnea. Hang tough (as always)! maryw

    • Damn I am so sorry but hopeful you will get relief and into that next trial and it works. Always thinking of you and sending good mojo your way.
      Your persistence and fortitude are amazing.

  7. Kimberly Caywood Roberts

    You are so inspiring and such a beautiful writer, so I hate that my comment has to be, “SHIT”.

    But know that we are right here with you, people you don’t even know; rooting for you, praying for you and eagerly awaiting your next post.

    Much love!

  8. Crap and more, Linnea. Please know we are trekking along with you. You keep us sane and real. And, dare I say, laughing. Keep trying. Love you!

  9. Linnea Schordine

    Stay strong. Always hope on the horizon. You are in our thoughts & prayers.

    Linnea NY

  10. Love you. Damn this.

  11. Praying now…for you. Xo

  12. Hi Linnea, I hate this bit of news, and I’m thinking of you – I am grateful for your posts & glad you are sharing your story, the good & not-so-good, with all of us. Keep going. xo

  13. I stand with you, in affection and care.

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