Joycecotton Posted March 11, 2021 Share Posted March 11, 2021 Repost from EGFR sub-forum, Hi all, I'm new here and so glad to meet everyone! I am 39 years old recently diagnosed with adenocarcinoma. Know from my doctor that I'm EGFR positive with exon 19 deletion which the doctor has put me on Tagrisso for treatment. Today is my day 2 on Tagrisso. In my pathology report, I also noticed that I'm negative for ALK or ROS gene rearrangement HOWEVER: My report states I'm "positive for additional copies of ALK gene" in 48% of the cells and "positive for additional copies of ROS1 gene" in 47% of the cells". It also specifically comments that "ROS gene copy number gain (CNG) was significantly associated with shorter disease-free survival and shorter overall survival than the group without CNG. Additional copies of ROS1 gene is an independent poor prognostic factor. " My doctor didn't go over all these details with me at any of our office visit and I was only told I'm EGFR positive. I don't get to see my full path report until today, which is 1.5 month after the office visit. I feel like I'm missing an important piece of information on my path report. I will definitely ask my dr. regarding this at next visit, which is about 2 weeks away. Just feel very concerned while I'm waiting. Does anyone know any additional information? Thank you in advance! Best, Joyce Link to comment Share on other sites More sharing options...
Judy M2 Posted March 11, 2021 Share Posted March 11, 2021 Hi Joyce, I'm sorry you've been diagnosed, but welcome to the EGFR club. Tagrisso really is a wonder drug. I was diagnosed in October 2019 with the same mutation (Stage 3b), and I've been on Tagrisso for about a year now (after radiation and chemo) and doing well. While Tag is better tolerated than chemo/radiation, some people do get varying degrees of side effects. I'm fortunate not to really have any. I can't speak to the presence of the other genes, and I've never seen my own pathology report. (Maybe it's better that way.) But if you don't get a good explanation from your oncologist, you might want to seek a second opinion. It never hurts. In the meantime, hang in there and let Tag do its job. It tends to work pretty quickly. Link to comment Share on other sites More sharing options...
TJM Posted March 12, 2021 Share Posted March 12, 2021 Joyce Welcome. Glad you found this site. Immuno/targeted treatment is not only the in treatment in many cancers, it seems to be very effective. You will be hearing from many members of the "mutant" club (my mental name for them). So much promise. Unfortunately, my cancer was dang near mutant free (1 mutation of no clinical significance). I think you will find the info helpful. Since I dont qualify I have not become an expert but fear not, many here are. I will not attempt to speak for them unless you dont get a response (wont happen), I'm starting a new survey for new "members": How did you find Lungevity? Your in my thoughts. I get my quarterly scan Monday. Wish me luck..😁 Peace Tom Link to comment Share on other sites More sharing options...
Joycecotton Posted March 12, 2021 Author Share Posted March 12, 2021 Hi Tom, Best luck!! We are all here for you! Joyce Link to comment Share on other sites More sharing options...
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