It’s been 10 months since diagnosis

[Janette c]

Hi all! I was diagnosed August 21st 2023 with stage 4 Nsclc. As a 58 year old female never smoker, I thought I was in excellent health until then. I became very sick out of the blue and had pleural and cardiac effusions. My diagnosis came through after getting pleural effusion drained and finding malignant cells. I am just now coming out of the shock of it all. I am interested in support or even just finding anyone who has similar circumstances to me.

After 5 months and 3 attempts, my rna results came back with very rare SH2B1-BRAF fusion as the driver of disease. There aren’t any targetable drugs for it and I am aware of some easily phase clinical trials that are looking into it. I started on Insignia trial Nov. 9th 2023 on carbo-pem-pem arm and just finished 11th cycle. Supposedly my disease is stable. A recent PET scan was clear except what radiologist thought were some mildly avid nodules which were likely related to VATS surgery and Pleurodesis (long story for another time)

Never thought I would be experiencing these things but glad I can connect with others who can really empathize.

 

 

[LilyMir]

Hi Janette, so sorry you have to join our club but warm welcome! I was diagnosed 2 years ago out of the blue too, in fact via an incidental scan, at 49 yo. Had surgery and adjuvant chemo and now adjuvant targeted therapy Tagrisso. My dad was just diagnosed with LC too which was a stunning shock again. He was put on Keytruda since he has extensive spread in lungs and we are hoping for a success story. Went through horrible times but my latest scans remain NED. There are many options for treatment for LC these days and as you can see your treatment seems to have been effective to date. Wishing you continued good luck and positive vibes!

[LouT]

Janette,

Welcome to our forums.  I'm thrilled to hear about your journey to NED and look forward to learning more about it and having you share your experience with others just beginning their own journey.  You'll find a great group of folks here who (collectively) have experienced all sorts of diagnosis, treatments, and outcomes.  Feel free to ask questions and explore our site.  We've all found that the more we learn about our disease the more empowered we are to participate in our ongoing treatment.

Lungevity has a number of avenues to help support you.  We have the forums here, various groups that meet during the week via Zoom, a host of information and services that benefit all of us who have suffered this disease.  I'd like to share a blog by one of our members who was originally diagnosed 20 years ago at Stage 3, then Stage 4, and a few years ago was declared "cured".  His experience is vast and his counsel worthy of a read.  The blog is titled, "10 Steps to Surviving Lung Cancer; from a Survivor".  It can be found here. 

I look forward to learning more about your journey and offering any support I can.

Lou

[Livin Life]

Hi Janette, You've been through a lot.  You are now in a very good place.  I had no idea when I began looking at lung cancer and related sites several months ago that tremendous advances have been made.  I've lost three sibs and both parents to various cancers, three of them lung cancer.  I am now in the scan and rescan phase of a likely diagnosis myself.  I feel like I'll be fine due to all my research, primarily hearing from survivors of nearly 10, and then many 10+ years, of NED or stable.  Sounds like you have been undergoing very effective treatment so you're there too now.  I don't know that I'll be of much help at this point other than I'm generally quite supportive.  Lily and Lou provided some good info for you.  I'm hoping others will chime in before long...