caret icon Back to all discussions

My Journey

I was diagnosed with Stage 4 NSCLC back in September of 2021. Never a smoker a with no family history of Cancer it was devastating to me and my husband (caregiver) but I’ve been on Tagrisso since December. My CT scan showed significant decrease in growth of my tumor back in February, but when I went back on May 5th, my centimeters went up slightly. I could tell that something wasn’t right because I didn’t feel the best. My oncologist said that my lungs air pockets were not opening like they should so the retraction from the air pocket hid some of my tumor where the Tagrisso was not reaching, she saw some cancer activity on the ct scan. So she recommended to keep taking the Tagrisso and I have to follow up sooner than expected. I’m a little sad but not depressed about it. Do you have any suggestions on this?

  1. I can imagine how upsetting that is to hear. I was diagnosed 22 years ago, so have many friends from the lung cancer community. A lot of my friends with the EGFR mutation are on Tagrisso and have had other areas of concern pop up. Most of their doctors have kept them on Tagrisso when it is working on most areas and sometimes have added a chemotherapy and other times precision radiation (like SBRT) for the random cells that Tagrisso didn't get. It is worthy of a discussion with your doctor, but please know there are so many advances and different lines of treatment, hope is real! Please feel free to follow up with us and let us know how you are doing. Warmly, Alisa, LungCancer.net Team

    1. I'm sorry to hear of these developments. It can be frustrating when you make the decision to move forward with the suggested treatment and then be struck with major hiccups. Please continue to talk through your concerns with your doctors as you continue to move forward with this drug and how the dynamics of this script move along. Wishing you the very best. Please let us know how things are going. Stay strong!

      Please read our rules before posting.