Anyone in this group been on Tagrisso and have it stop working?

Hi @lmd1, like @lls8000, I'm checking in. Did you discuss the results of the lung tissue biopsy with your oncologist?

Waiting for results; should know something by end of next week. I have an appointment on the 17th with my oncologist. My blood biopsy still showed EGFR deletion 19. Thanks for checking on me. Praying for answers.

Hi @lmd1, I have the same mutation. I didn't start taking Tagrisso until my cancer had metastasized to my brain. At the time I started, my Oncologist and Radiologist discussed whether the size was small enough to be treated by Tagrisso alone. There are guidelines for those decisions, but there can't be any hard rules because, like we always hear, "Every body is different." And every tumor, and every circumstance, etc.

My tumor was large enough (3.2 cm diameter) that it had to come out followed by some radiation. The good news is that was 3 years ago. Since then, that 1 Tagrisso a day has kept me cancer free. I hope for the best for you. Please let us know when you hear more.

So happy you are doing well now! May I ask was the tumor in your lung removed? I had surgery for brain tumor (metastasis) and radiation but they said Tagrisso would take care of lung tumor. I’ve had no chemo, radiation or surgery for lung tumor. I want it addressed and have asked for months to do so.

Hi @lmd1

Yes, my lung tumor was in the upper right lobe and was 3.1 cm in diameter. They removed the entire lobe. The cut line stained positive for cancer cells, so I had 33 rounds of radiation. The lung cancer had also metastasized to a nearby lymph node, so I also had 4 rounds of chemo.

My doctors discussed the tumor size guidelines after my cancer metastasized to my brain. Below a certain size, they said they would try Tagrisso alone. A bit larger, radiation and Tagrisso. Even larger, surgery, radiation, and Tagrisso. Surgery and radiation have side effects your doctors want to avoid if they can. Five years after my chest radiation, my doctors still speculate that it might be the cause of some of the auxiliary issues I've seen lately.

Do you know how big your chest tumor is?

My tumor originally was twice the size of yours. It shrunk to 4.5 cm and is starting to grow.

Has your Oncologist told you why they haven't addressed your lung tumor?

That is a lot. Glad u r doing well. What were some of the auxiliary side effects of radiation. My onc is discussing the possibility for radiation on my LLL. Surgery seems to be a no for stage iv. I too had Mets to the brain 5 tumors and gamma knife to remove.

Hi @khameroff, There is an ongoing discussion that started last Spring regarding radiation to the lung. The discussion has morphed into some other topics, but the early responses may be helpful: https://connect.mayoclinic.org/discussion/radiation-treatment-on-lul/
Generally, surgery is not done on stage IV patients (but not always). Cancer cells have already escaped the primary tumor. Treatment of the whole body is usually more beneficial. Is your lung tumor growing?

Nothing definitive. After the brain surgery, I'm still doing physical therapy for different parts of my body that aren't working like they used to, including the thoracic region of my back, right shoulder, and right hip. (The cyst was on the left side of my brain.) Two different therapists have speculated that the radiation has a stiffening effect on soft tissue, including the fascia.

I had severely low iron levels that required transfusions. No known cause. I'm still struggling with low blood sodium, and for a while, I had high blood potassium at the same time. My Oncologist says the medical community is becoming more aware of the potential long-term negative effects of radiation, especially when it's administered to the chest. I know my Onc. is regularly testing my thyroid level because of the radiation.

On the other hand, cancer has some pretty negative side effects as well! My father-in-law's lung cancer was successfully eliminated by radiation alone.