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

Posted by lmd1 @lmd1, Sep 13, 2023

I was diagnosed October 2022 with NSCLC EGFR mutation. I’ve been on Tagrisso since November 2022 and was doing great until my scans yesterday showed growth in my lung tumor. Having a biopsy to see if it has mutated again. Has anyone experienced this? Heartbroken and scared.

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@lmd1, This news has to be so hard to hear. Deflating. Sorry, I'm not on Tagrisso, but I do take a different targeted therapy, that will eventually stop working for me too. It sounds like your oncologist is taking the appropriate steps in ordering a fresh biopsy and biomarker test, to see if there is a different therapy that may help. Do you have progression in just one area, or multiple areas? The Tagrisso may still be protecting other parts of your body, are you continuing to take it?

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@lls8000

@lmd1, This news has to be so hard to hear. Deflating. Sorry, I'm not on Tagrisso, but I do take a different targeted therapy, that will eventually stop working for me too. It sounds like your oncologist is taking the appropriate steps in ordering a fresh biopsy and biomarker test, to see if there is a different therapy that may help. Do you have progression in just one area, or multiple areas? The Tagrisso may still be protecting other parts of your body, are you continuing to take it?

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Growth was in the primary tumor in the lung. I am still taking the Tagrisso.

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I'm so sorry to hear this. I've been on Tagrisso since the end of December 2020 with no recurrence. But I had surgery to remove the metastatic tumor in my brain followed by radiation to kill the cells that weren't removed. Tagrisso was added to kill any clumps of cancerous cells that might be lurking somewhere.

Since you say your growth was in the primary tumor in the lung, does that mean you did not have surgery? Did you have radiation? Or did your Oncologist believe the tumor was so small that Tagrisso alone could remove it? Statistics are certainly involved in medical treatments. If doctors could only apply treatments that they were 100% certain would work, they wouldn't be able to treat most of the patients they see.

I'm glad you're still on Tagrisso. Lung cancer can be very persistent and Tagrisso can kill any new cells before they grow large enough to be detected.

I'm curious, as I'm sure you are, to learn the results of the biopsy and the next step(s) in your treatments. Please keep us informed and all the best to you!

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So sorry to hear this, lmd. I was diagnosed with Stage 1b EGFR in late Feb. had lung surgery in March followed by 4 chemo treatments. Have been taking Tagrisso for not quite 2 months with my first scan scheduled for early Oct. I’m sure you are frightened, but there is such hope for lung cancer these days. I personally know 2 people who have had recurrences and are thriving 15 years after first diagnosis. Stay strong. The community is with you.

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@franciekid

So sorry to hear this, lmd. I was diagnosed with Stage 1b EGFR in late Feb. had lung surgery in March followed by 4 chemo treatments. Have been taking Tagrisso for not quite 2 months with my first scan scheduled for early Oct. I’m sure you are frightened, but there is such hope for lung cancer these days. I personally know 2 people who have had recurrences and are thriving 15 years after first diagnosis. Stay strong. The community is with you.

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I’d be lying if I said I wasn’t frightened. Because I am Stage IV that is why they left the lung tumor to be treated by Tagrisso. I realize this happens but still scary. Thanks for your support.

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@lmd1

I’d be lying if I said I wasn’t frightened. Because I am Stage IV that is why they left the lung tumor to be treated by Tagrisso. I realize this happens but still scary. Thanks for your support.

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@lmd1, I'm just checking in, has your oncologist come up with a recommendation? Or has a biopsy been scheduled?

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@lls8000

@lmd1, I'm just checking in, has your oncologist come up with a recommendation? Or has a biopsy been scheduled?

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Blood biopsy showed same EFGR del19 mutation. Go tomorrow for lung tissue biopsy to see what it shows. Praying for an answer. Thanks for checking in.

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@lmd1

Blood biopsy showed same EFGR del19 mutation. Go tomorrow for lung tissue biopsy to see what it shows. Praying for an answer. Thanks for checking in.

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I hope tomorrow's tissue biopsy goes well for you. Keep us posted.

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I was diagnosed with Stage 4 EGFR-positive NSCLC in April. I started on Tagrisso April 15. My first scan in July showed mixed response. The liquid biopsy was repeated but showed the same L858R mutation. The follow-up scan in September confirmed progression. We have repeated the liquid biopsy again, but we don't have the results back yet. Tissue biopsy isn't a good option because the cancer growth is in the bones, and it's difficult to get enough of a tissue sample to test. In the meantime, I have switched to chemotherapy. I am no longer taking Tagrisso because of the toxicity of two different types of cancer treatment. I will do two cycles 3 weeks apart and then scan to see if it's working. The first treatment wasn't too bad - fatigue and nausea but no vomiting. The next cycle is Oct 3.

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I recommend you look at the EGFR Resisters web site. https://egfrcancer.org/. There are 3 really good videos on progression that you can watch there.

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