Rower Michelle Posted August 6, 2020 Share Posted August 6, 2020 Hi All, I had the brain MRI and CT scan yesterday afternoon and met with the oncologist this morning. Less than 24 hours to wait for results, love that my KU crew now understands scanxiety! The brain MRI was clear (whew) and the CT scan looked great. Doc says the scar tissue is improving and my lungs look pretty normal. So I mustered up the courage to ask at this point what’s the difference between a stable scan and no evidence of disease. He said he considers me in remission, NED. He’s very pleased with the results as they are atypical. (Hmmmm is the hippie protocol working???? Who knows....) So we know with ALK this is not a victory lap and to continue on a battle footing as it’s not a matter of if the targeted therapy stops working but when. We did attend the virtual ALK conference this weekend, there’s some new thinking about monitoring guidelines as patients hit the two year mark on meds. There are three ALK variants, 1,2 & 3. Variant 3 is associated with worse outcomes and warrants closer monitoring We asked the doc if we know which variant I have. Seems the science is so new that “way back” in 2018 variants weren’t tested. I love that my oncologist seems to be a real partner here and he’s willing to see if we can rest my tissue to find out so we’re prepared in the future. Labs will be at the end of September and next scans will be either in October or November. For now we carry on! Thanks guys for all the continued prayers and support! Michelle Tom Galli, Steff, ChiMama and 1 other 4 Quote Link to comment Share on other sites More sharing options...
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