EGFR Exon 19 Mutation - the Return (?)

Posted by Matthew K @flusshund, Mar 11 7:16am

A comment rather than a question. With zero family history, I was diagnosed with nonsmokers lung cancer in 2018. It metastasized to my brain in 2020. And it has been well-controlled by my daily Tagrisso since then. Until a month ago when my 'every 3-month' brain MRI showed increased activity at the resection site (the place where they removed the tumor in my brain.) A follow-up MRI with perfusion showed blood flow in the area, and a biomarker test showed twice the level in my bloodstream as last July. My Oncologist and Radiologist decided that one more dose of radiation should kill the new cells, and that's what we (they) did.

The question is, "Why this new activity?" One possibility is that I do occasionally miss my Tagrisso on weekends when working on the property. My Oncologist told me that skipping an occasional weekend altogether was OK. Now, he's decided that I'm an exception to that rule, and my wife helps me ensure that I never miss another dose! So, maybe that was it. OR, the Tagrisso isn't working as well as it used to. That's problematic because there currently isn't a backup plan. While the FLAURA4 trial did show positive results in combining chemo with Tagrisso, my Oncologist is skeptical because chemo doesn't cross the blood/brain barrier. The plan is to check my biomarker level and get another brain MRI in 3 months.

My spirit's OK because I've found a renewed sense of purpose in advocacy. This group is fantastic. When I was first diagnosed and didn't feel my doctors were telling me what to expect after chemo and radiation, I got valuable advice from this group.

Now, I want to share that there are even more groups, starting with GO2 for Lung Cancer, Membership is free for survivors, caregivers, and advocates. Many of us deal with the mental and emotional side of our diagnoses and treatments. Personally, I feel better after volunteering for the call line, where newly diagnosed patients can call me and talk to someone who has been through the fire.

They (we) also have a monthly "Gathering Hope" session on Zoom or YouTube Live where you can interact with fellow survivors and medical personnel. The next one is tomorrow (3/12/2024) night.

Hang in there, everyone. Over 160 of us went to our legislators on Capitol Hill last Tuesday to lobby for additional lung cancer research funding. Together, we can all get through this.

Sheesh, I sound like some kind of ad!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@flusshund, Matthew, Thank you for sharing this news. We know that drug resistance is lurking over our shoulder, ready to show up at some point. We look perfectly healthy and are fortunate to be able to live fairly normal lives on the outside. Friends, coworkers, and even family think we're cured, but we live with this constant weight of recurrence, and sometimes fear. We need the research to stay head of our progression, our lives literally depend on it! Your work helps all of us!
I'm hopeful that taking your dose on a more consistent basis is helpful to push more of the drug to the brain. With Tagrisso and brain progression, do they ever increase the dose? That is a proven success method with ALK and alectinib, although many people aren't able to increase dosage due to side effects too.

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