Lung Cancer EGFR Mutation Stage 4: What treatments did you have?

Posted by sophal168 @sophal168, Apr 4, 2023

Hi I’ve been diagnosed with stage 4 lung cancer EGFR Mutation !!!
Can this be cure? Anyone in here have the same mutation? And how is your treated?

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

@etb2

WHAT is EGFR mutation to the lug? Is it ANYTHING like eGFR of the kidney? I'm so confused.

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In lung cancer, like the type I have, EGFR refers to the Epidermal Growth Factor Receptor. In my case, I have a mutation of the EGFR gene, Exon 19. The Exon 19 designation indicates the specific protein molecule that has mutated. The mutation has caused the receptor cell to become cancerous, which means it's replicating way faster than intended.

Tagrisso is a targeted therapy that specifically targets these runaway receptor cells. The beautiful thing about this targeted therapy is that Tagrisso crosses the blood/brain barrier, unlike chemo. So Tagrisso protects our brains as well as the rest of our body.

I had my brain surgery to remove the metastatic lung cancer cyst in 2020. September 30 will be three years cancer-free, thanks to Tagrisso.

As sg points out, eGFR refers to something else in kidneys - a filtration rate, used to determine if the kidneys are functioning normally.

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@sglaza

Hello etb2,
Medical acronyms can be confusing for sure. eGFR stands for “estimated glomerural filtration rate” and is a blood test result that can help determine how well your kidneys are working (or not working). For lung cancer EGFR refers to a genetic marker on lung cancer cells that helps define that particular type of cancer (different genetic mutations can lead to different types of lung cancer). Once the physicians have determined what type of cancer cell mutation you may have then they can prescribed the most effective drug treatments for that specific cancer.
In my particular case I had surgery to remove the right lower lobe of my lung which contained the tumor. The genetic testing of that tumor showed that it had the EGFR mutation which put me on the front line chemo treatment of cisplatin and pemextred (by IV infusion) followed now by daily oral doses of Tagrisso.
I hope this helps!

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If one has NSCLC Adenocarcinoma but is negative for the EGFR mutation does that mean Tagrisso will not work?? What are the options in this case. A once a day pill sure sounds good. Thanks

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@poodledoc

If one has NSCLC Adenocarcinoma but is negative for the EGFR mutation does that mean Tagrisso will not work?? What are the options in this case. A once a day pill sure sounds good. Thanks

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Hello poodledoc,
The results of genetic marker testing of lung cancer tumors really need to be reviewed and interpreted by an oncologist. Those test results can be quite technical and hard for a lay person to interpret. From my somewhat limited knowledge, Tagrisso is only prescribed and beneficial when the tumor is EGFR positive. Again, depending on the full panel of genetic marker testing conducted on the tumor tissue, an oncologist can outline their recommended course of treatment. It does help to educate yourself as much as possible on the subject beforehand so that you can get all your questions answered and to make decisions that you are comfortable with. Chemotherapy treatments can be quite beneficial however it helps to understand the potential “cure” rates and reported likely side effects.

Good luck!

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@sglaza

Hello poodledoc,
The results of genetic marker testing of lung cancer tumors really need to be reviewed and interpreted by an oncologist. Those test results can be quite technical and hard for a lay person to interpret. From my somewhat limited knowledge, Tagrisso is only prescribed and beneficial when the tumor is EGFR positive. Again, depending on the full panel of genetic marker testing conducted on the tumor tissue, an oncologist can outline their recommended course of treatment. It does help to educate yourself as much as possible on the subject beforehand so that you can get all your questions answered and to make decisions that you are comfortable with. Chemotherapy treatments can be quite beneficial however it helps to understand the potential “cure” rates and reported likely side effects.

Good luck!

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I've been diagnosed with NSCLC...no biopsy becuz of a bleeding disorder...DO you think they did a EGFR and I just don't know...or what?

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O yes....I am in 4th stage CKD. eGFR usually runs 26 -31. Sorry if I'm being stupid, just my situation seems to be changing and I'm confused with not to many answers. Thank you for your support. It is REALLY appreciated.

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@etb2

O yes....I am in 4th stage CKD. eGFR usually runs 26 -31. Sorry if I'm being stupid, just my situation seems to be changing and I'm confused with not to many answers. Thank you for your support. It is REALLY appreciated.

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Hi @etb2, When you are diagnosed with a cancer, it's normal to feel overwhelmed with information, and to feel like you don't know anything at all! Hang in there and learn what you can. Hopefully your oncologist can help explain the details of your cancer. There are many different drivers of lung cancer. That's good news, as in some cases the researchers have been able to develop treatments that are specific to the different types of cancers.
When the lung cancer community talks about EGFR they are referring to the DNA of your cells, with the EGFR driver going awry, mutating, and causing the cancer to grow. That has nothing to do with the kidney lab test that is also named eGFR. I know it's confusing!
When I was diagnosed, I had a tissue biopsy (from my liver), but also a liquid/blood biopsy. Those showed that I had lung cancer, and the blood showed what was driving the cancer (I have an abnormal ALK mutation). Knowing what is driving your cancer is a first step in determining what treatment will work, and it will allow you to focus on learning about your specific type of cancer.
Tagrisso is designed to treat EGRF lung cancer. I take a different inhibitor, alectinib, which is designed to treat ALK lung cancer.
When is your next appointment with an oncologist? Have you seen one yet?

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My wife had breast cancer and was a year clear now they found cancer in her lung and lymph modes they say it is treatable but not curable has any one lived 5 years or more and any suggestions which way to go?

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@kalleem1

My wife had breast cancer and was a year clear now they found cancer in her lung and lymph modes they say it is treatable but not curable has any one lived 5 years or more and any suggestions which way to go?

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Hello @kalleem1, welcome to Mayo Connect. I’m sorry to hear that you and your wife are facing this challenge. Recurrence of cancer can be heartbreaking.
If the cancer found in the lung is metastatic from the original breast cancer the expected treatment may be different than if the cancer is a secondary lung cancer. The drivers of breast and lung cancer can be different, so they are treated differently.
How is your wife handling the news? Has a biopsy been completed in order to determine what type of cancer is in the lung?

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My husband is going through the same treatment for Upper Right Lobectomy EGFR Non Small Cell Lung Cancer. He has completed two rounds of your same chemotherapy, and is moving onto the Tagrisso. (Difficult reaction to chemo from aftermath of surgery related issues). Hoping to get him back on track with a new antibiotic today before starting Tagrisso. Thank you for your input on this support group. It helps to have all these complex issues explained. My best to you.

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@lls8000

Hello @kalleem1, welcome to Mayo Connect. I’m sorry to hear that you and your wife are facing this challenge. Recurrence of cancer can be heartbreaking.
If the cancer found in the lung is metastatic from the original breast cancer the expected treatment may be different than if the cancer is a secondary lung cancer. The drivers of breast and lung cancer can be different, so they are treated differently.
How is your wife handling the news? Has a biopsy been completed in order to determine what type of cancer is in the lung?

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Hi guys yes we are waiting on the results now and thank u very much for your concern they say the breast cancer is back and they want to set up chemo for it or should we wait and see if there are pill options as the chemo took a lot out of her any suggestions guys

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