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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Profile picture for duan62533732 @duan62533732

Stage4 lung cancerI'm 67 ,female

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@duan62533732, Frustration, or whatever else you are feeling, are perfectly valid emotions. We all want more time from these drugs. Targeted therapies have been a game-changer in treating some cancers, but until we have a real cure they'll never be enough.

Here's a link to a similar discussion from last spring from @lmd1. Possibly she can provide an update on how's she's doing. https://connect.mayoclinic.org/discussion/anyone-in-this-group-been-on-tagrisso-and-have-it-stop-working/
Hugs!

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Profile picture for duan62533732 @duan62533732

A scan few days ago revealed a new tumor in the upper left lung, because of neck pain, there may be bone metastasis and brain metastasis. The doctor will arrange for an MRI and another genetic, then decide on a medical plan.
I'm just frustrated. Thank you for replying me.

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Hi @duan62533732, Have you learned anymore about the new nodule?

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I was diagnosed with stage 4 NSCLC in August 2024. It is EGFR Exon 19 positive. Primary adenocarcinoma of the lung with mets to lymph nodes, bone, and brain. I was started on Tagrisso in September 2024. Also had radiation to the left femur. Results were relatively good for the first 6 months. Brain tumor resolved. All other tumors shrunk by 50%. Since then I have been “stable”, no better, no worse. I’m okay with stable for now. My issue is the side effects of the Tagrisso. Has anyone ever developed weird skin issues? About 10 months after starting Tagrisso, I developed the weirdest “rash” on my legs and arms. Started as red blotches and became very dry and scarlet. It now looks like bruises. It doesn’t bother me at all. No itching. Labs all normal. It’s just extremely ugly. I certainly don’t want to stop the Tagrisso but I’m getting worried.

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Profile picture for janiedon @janiedon

I was diagnosed with stage 4 NSCLC in August 2024. It is EGFR Exon 19 positive. Primary adenocarcinoma of the lung with mets to lymph nodes, bone, and brain. I was started on Tagrisso in September 2024. Also had radiation to the left femur. Results were relatively good for the first 6 months. Brain tumor resolved. All other tumors shrunk by 50%. Since then I have been “stable”, no better, no worse. I’m okay with stable for now. My issue is the side effects of the Tagrisso. Has anyone ever developed weird skin issues? About 10 months after starting Tagrisso, I developed the weirdest “rash” on my legs and arms. Started as red blotches and became very dry and scarlet. It now looks like bruises. It doesn’t bother me at all. No itching. Labs all normal. It’s just extremely ugly. I certainly don’t want to stop the Tagrisso but I’m getting worried.

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Hello @janiedon , Welcome, and thanks for sharing your story. The targeted therapy medications, like Tagrisso are amazing when they work! Unfortunately, they are strong and the side effects can be difficult to deal with. I take a different medication for the ALK positive mutation, similar to EGFR. Rashes can be fairly common. I'm glad that yours doesn't itch or hurt. I've seen others mention a reduction of the dose of Tagrisso. Have you had a chance to consult with your oncologist?

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