RoseBush22 Posted May 22 Posted May 22 I am new here and am not too sure what to say other than that I am terrified. My mom was diagnosed with Stage 4 NSCLC, EGFR, Exon 19 del in 2021 and put on Tagrisso right away. Until this January, she had pretty mild symptoms and was thriving on Tagrisso. (Just some skin and nail issues that she deemed as manageable.) Over 2022/2023 she occasionally had several bone spots that required radiation, but overall the Tagrisso seemed to be working well for her brain and bone mets. In January 2024 she started having some dizziness and double vision. She was diagnosed with Leptomeningeal Disease at the beginning of April and I am absolutely terrified. She is not doing well emotionally (understandably) and neither am I. It all feels very surreal. I lost my dad 12 years ago and am terrified of being an orphan in my early 30s. I can't imagine my life without her and I am all consumed with researching LMD and possible treatments to the point where it's obsessive and unhealthy. She is such an active person and she's been trying to maintain her active lifestyle, which is good but it's hard to watch when she struggles with fatigue and nausea and dizziness. We got her a second opinion at MSK with Dr. Boire last week, which was good. I just feel overwhelmed and sort of hopeless right now. Sorry for the long ramble, I appreciate whomever reads this. Tom Galli 1 Quote
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