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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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2 Reactions@yaduhyaduhsquawk I find this topic one of the most confounding. I have often been told CTs don’t necessarily improve with treatment. That a stable CT is a reasonable goal; we do not want to see progression. But many CTs do improve. Then of course it seems every doctor has a different opinion as to what is even going on in my CTs, so it’s hard to know how the doctors even arrive at these distinctions. But if you sputum converted over 12 months ago, and your doctor isn’t seeing any improvement on CT, that may be why she thought it ok to stop. My specialist said we would only extend beyond the 12 months from sputum conversion if we saw signs of continued response on CT. If not, not. There is a cost v. benefit to these drugs and if there are no signs of continued benefit the costs have to be reevaluated. Hopefully you have a follow up appointment soon with your medical team and can review where you are and what makes sense moving forward. Good luck.