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 Link to comment Share on other sites More sharing options...
LexieCat Posted August 6, 2020 Share Posted August 6, 2020 GREAT NEWS, Michelle! Yeah, I love it when they get back to you with results fast. Even when it's bad news, waiting is the worst. Your doc sounds great. Keep on keepin' on! Link to comment Share on other sites More sharing options...
Lin wilki Posted August 6, 2020 Share Posted August 6, 2020 Great news! Keep on truckin’ Link to comment Share on other sites More sharing options...
Tom Galli Posted August 6, 2020 Share Posted August 6, 2020 Michelle, By the power vested in me, I hereby declare you NED! Go forth and celebrate! Stay the course! Tom Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted August 6, 2020 Share Posted August 6, 2020 Hi Michelle ... Hearing the word "crew" does take me back to rowing. I probably will never do it again with all that is going on. Ditto with LexieCat, Lin and Tom. I think I'll start a thread so that someone can explain NED, stable and other things. I have some idea of the things but "sho nuff" explanations are great. Steve Link to comment Share on other sites More sharing options...
LouT Posted August 6, 2020 Share Posted August 6, 2020 Michelle, If you could see me you would see a huge smile....lots of teeth showing. I'm so glad for your scan results and always in admiration of the bravery and mindset you bring to your recovery and this forum. I'm in with the crowd on this; GO AND PARTY!!! You deserve it. I get my scan tomorrow and results on Monday, so fingers crossed. Lou Link to comment Share on other sites More sharing options...
Roz Posted August 6, 2020 Share Posted August 6, 2020 Hooray Michelle! I'm so happy that you got such great news. NED is the best!!! Best, Ro Link to comment Share on other sites More sharing options...
Steff Posted August 6, 2020 Share Posted August 6, 2020 Happy dance, great work Michelle! Link to comment Share on other sites More sharing options...
BridgetO Posted August 6, 2020 Share Posted August 6, 2020 wow! Yay for you and your best friend NED! Link to comment Share on other sites More sharing options...
catlady91 Posted August 7, 2020 Share Posted August 7, 2020 Fantastic!! Link to comment Share on other sites More sharing options...
GaryG Posted August 7, 2020 Share Posted August 7, 2020 Great news. Congratulations. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 7, 2020 Author Share Posted August 7, 2020 I’m out of reactions for the day, thank you so much. Don’t know how I would cope if I didn’t have you guys! Link to comment Share on other sites More sharing options...
GaryG Posted August 7, 2020 Share Posted August 7, 2020 8 hours ago, Rower Michelle said: I’m out of reactions for the day, thank you so much. Don’t know how I would cope if I didn’t have you guys! Well I asked the same question about you. You were very instrumental in lifting my spirit and raising my hope. Your good results are especially important to me. Link to comment Share on other sites More sharing options...
Sabacat Posted August 7, 2020 Share Posted August 7, 2020 Wonderful news!!! Link to comment Share on other sites More sharing options...
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