Completed 16 months of the big 3. CT unchanged
Hi, I had a visit with my doc a few days ago. I originally planned to take “the big 3” for 18 months ending June 31, 2026. Was surprised when my doc said I could go ahead and stop them if I wanted to. I typically see things to the very end and don’t vary much. I told her since she is the one with the medical degree; I would rather she make the decision for me. She said, OK “discontinue them, 2 more months isn’t going to make any difference.” She recommended an updated CT scan as “a baseline”. AND….I got yet another surprise when my CT was “unchanged” after treatment. Still has “tree-in-bud clusters” suggestive of an active lung infection.” 😳 NOT what I was hoping to see. I resumed the meds, only missed 1 day of dosing. Although, I probably shouldn’t continue the treatment that isn’t working. I have messaged my doc, but haven’t heard back (it was on a Friday afternoon). Anyone else have a similar experience?
I was so hopeful the MAC would have cleared up! I took the meds exactly as recommended.
Thanks for reading…
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I originally did 28 months of the big 3 which included amikacin iv and arikayce. My ct was unchanged but can also mean stable.
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