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Since December my entire life has turned around. Praying. We were vacationing in Florida and spent a month in hospital and found out Stage IV lung cancer with EFGR. Now taking Tagrisso . I know I am blessed with immunotherapy just wondered what others can give me such as advice

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Replies to "Since December my entire life has turned around. Praying. We were vacationing in Florida and spent..."

I've been Stage IV since my nonsmokers lung cancer metastasized to my brain in Fall 2020. Also the EGFR mutation and Tagrisso. I'm tested (head MRI, CAT scan, MUGA scan) every three months and everything's still good. Working full-time, tending to the trees and gardens on our acre, walking the dog -- life is good.

Side note: Tagrisso is not immunotherapy. No risk of your immune system attacking internal organs as in standard immunotherapy. It actually targets and blocks the mutated gene, rendering it ineffective.

I AM dealing with a seemingly never-ending stream of physical issues including SI joint pain, chronic back pain, various other muscle issues, and side effects of being immune-suppressed. The latest theory is that I may have celiac disease. Upper GI this Thursday to find out. We know most of what I'm dealing with is a result of the brain surgery, not the Tagrisso, except being immune suppressed. After my second diagnosis, I purposely lost that extra 20 lbs I didn't need, regularly work out, and continue to see a wonderful Physical Therapy group, so everything continues to improve. My Neurologist feels that, with my current rate of progress, I'll have my old body back by the end of the year and once again hiking mountain trails.

My Oncologist is following a study of somebody who's had the same two occurrences of the same lung cancer history I've had: a small cyst in the upper right lobe, surgically removed, radiation, chemo, followed by metastasizing to the brain two years later, surgery, radiation. This person has been on Tagrisso for over 7 years now with no recurrence.

All in all, a few very dealable side effects, and life goes on. We're lucky that we got the type of lung cancer modern research has made significant progress with. Keep the faith!

@dik27, that must've been such a shock to go from vacationing to a cancer diagnosis. Thank goodness that immunotherapy is a treatment option for you. I moved your question about Tagrisso to this existing discussion:
- Has anyone taken the targeted therapy osimertinib (Tagrisso)? https://connect.mayoclinic.org/discussion/chemo-tab/

In addition to the kind and helpful response you received from @flusshund already, you can click the link to see experiences of other members like @nursed2075 @gxvuong @1patrick @shaila1902 @lynnycooks and more.

Dik, how long have you been taking Tagrisso? How are you doing?