← Return to Stage 4 likely - what are the treatment options if surgery is not one?

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Profile picture for Matthew K @flusshund

@strongone21, welcome to the club no one wants to join! Unfortunately, stage 4 is stage 4. For what it's worth, I've had the EGFR Exon 19 mutation for 7 years, but I was diagnosed at stage 2b. I became stage 4 when the cancer metastasized to my brain two years later.
I'm a patient research advocate (PRA) and am currently reviewing research proposals from the patient/community perspective. I keep abreast with the announcements of the International Association for the Study of Lung Cancer (IASLC) and haven't heard of any comparative studies like you're asking for. But you're on the right track. The current thinking is that lung cancer is not one disease, but many diseases under one umbrella term.
For what it's worth, I spoke with an oncologist at MD Anderson this past February who told me he has a patient that has been on Tagrisso for 11 years. I've been on it for 5 and I'm still working full-time as a NASA engineer. In fact, I was recently promoted to Associate Technical Fellow, so somebody's happy with my work.
The head of the IASLC PRA program has the ROS1 mutation, but I don't remember how long ago she was diagnosed. I believe she was diagnosed at least 10 years ago and maybe even 20, but don't quote me on that. And, at the last World Conference on Lung Cancer, I met a patient advocate who was diagnosed 26 years ago! So it does happen.
If you're inclined to do your own research, as a lung cancer patient, you can join the IASLC for free. Once you log into their website at iaslc.org, you can go to "Lung Cancer 360" where you'll find a huge number of podcasts, webinar recording, conference proceedings, virtual simulations, online courses, and more. You'll get your biomarker results back long before you'll have enough time to go through all the material there!
Hope is the byword of every lung cancer survivor. Studies have shown that a positive mental attitude does improve all aspects of survival and treatment recovery, so stay positive! I wish you all the best.

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Replies to "@strongone21, welcome to the club no one wants to join! Unfortunately, stage 4 is stage 4...."

Thank you. Can't wait to learn more about treatment options and biopsy results. Thanks for sharing helpful information on your story, others with successful recovery and the support groups.