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.

In October I was diagnosed with Stage IV lung cancer caused by EFGR gene mutation. I had brain metastases and had to have surgery to remove the largest tumor. I then had three targeted radiation treatments to the brain. I am taking Tagrisso and it is shrinking the lung tumor as well as the two small brain tumors. Sadly, there is no cure. The medicine is keeping it in check. I feel great and am living my life as normal. Praying it continues to work. My advice is to not google and read everything you see on the computer.
Praying for you and your treatment.

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@lmd1

In October I was diagnosed with Stage IV lung cancer caused by EFGR gene mutation. I had brain metastases and had to have surgery to remove the largest tumor. I then had three targeted radiation treatments to the brain. I am taking Tagrisso and it is shrinking the lung tumor as well as the two small brain tumors. Sadly, there is no cure. The medicine is keeping it in check. I feel great and am living my life as normal. Praying it continues to work. My advice is to not google and read everything you see on the computer.
Praying for you and your treatment.

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lmd, how are you tolerating the Tagrisso. I just had surgery for Stage 1b, and even though there is no metastases, my oncologist wants to start Tagrisso. Also how are you paying for it? Thank you.

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@lmd1

In October I was diagnosed with Stage IV lung cancer caused by EFGR gene mutation. I had brain metastases and had to have surgery to remove the largest tumor. I then had three targeted radiation treatments to the brain. I am taking Tagrisso and it is shrinking the lung tumor as well as the two small brain tumors. Sadly, there is no cure. The medicine is keeping it in check. I feel great and am living my life as normal. Praying it continues to work. My advice is to not google and read everything you see on the computer.
Praying for you and your treatment.

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Am on the same medicine right now for approximately 6weeks!! I haven’t had any surgery as my cancer is only within the lung!!!
So to your knowledge there’s no cure for this mutation?
Can I ask which hospital are you treating at?

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I began my treatment in Virginia at Inova Hospital and am now with Dana Farber and Brigham & Women’s Hospital. We had bought a house herein MA last September and fell I’ll and found it was cancer. The diagnosis delayed my move until end of November. I had surgery and radiation in VA but they were consulting with doctors here in MA. I have been tolerating the Tagrisso well. The first week I did get mouth ulcers but they cleared quickly and since then no side effects.

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@franciekid

lmd, how are you tolerating the Tagrisso. I just had surgery for Stage 1b, and even though there is no metastases, my oncologist wants to start Tagrisso. Also how are you paying for it? Thank you.

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I am tolerating Tagrisso with no issues. The first week I had mouth ulcers but they cleared quickly and have had zero side affects since.

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@lmd1

I began my treatment in Virginia at Inova Hospital and am now with Dana Farber and Brigham & Women’s Hospital. We had bought a house herein MA last September and fell I’ll and found it was cancer. The diagnosis delayed my move until end of November. I had surgery and radiation in VA but they were consulting with doctors here in MA. I have been tolerating the Tagrisso well. The first week I did get mouth ulcers but they cleared quickly and since then no side effects.

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How you find Dana Farber Hospital? Are they really good?
Am planning to travel to America but still unsure of which hospital to go to. Some told me Mayo clinics some told me Dana Farber!!!

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@sophal168 @franciekid @lmd1, I thought I'd tag a few more members who have experience with non-small cell lung cancer with EGFR mutation like @56899t52 @shaila1902 @jannad @mddan216 @flusshund. They can share their treatment experiences and more.

Here are some related discussions that might also interest you:
- Has anyone taken the targeted therapy osimertinib (Tagrisso)? https://connect.mayoclinic.org/discussion/chemo-tab/
- Afatinib (Gilotrif): Anyone taken this? https://connect.mayoclinic.org/discussion/afatnib/

Choosing where to get care can be tough, @sophal168. At Dana Farber or at Mayo Clinic, you will be in good hands. @lls8000 can share her experiences of stage 4 lung cancer care at Mayo Clinic.

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@sophal168

How you find Dana Farber Hospital? Are they really good?
Am planning to travel to America but still unsure of which hospital to go to. Some told me Mayo clinics some told me Dana Farber!!!

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I was diagnosed with Stage 4, metastatic lung cancer with the EGFR mutation in October 2020. I'd say Mayo Clinic or MD Anderson in Houston, TX, which is also considered one of the top cancer hospitals in the country. Besides, MD Anderson has a cool slogan: "We Make Cancer History". Gotta like a good pun. 🙂

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I have been researching 5—6 hours a day since my brother was diagnosed with SClung cancer in September 2022. He is doing treatments at the Mayo clinic. In his case they seem very against supplementing traditional chemo with other holistic stuff, ie. Vitamins, juicing or other commonly available stuff from the health food shop. He is fine with that. I have researched enough to know that MD Anderson has a different broader viewpoint, they seem to be open to incorporating things that if not proven to help you , may still be beneficial and thus may carefully expressed “ to have the placebo effect”.
Unless you are getting free medical care or at least free medication, I would say decided for yourself if you want to fight this with all you can or if you want to be a well meaning statistic in a pure clinical study. This too is noble but while there is a chance and hope……fight it! Wishing you a very motivated care taker and God’s grace.

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@sdm927

I have been researching 5—6 hours a day since my brother was diagnosed with SClung cancer in September 2022. He is doing treatments at the Mayo clinic. In his case they seem very against supplementing traditional chemo with other holistic stuff, ie. Vitamins, juicing or other commonly available stuff from the health food shop. He is fine with that. I have researched enough to know that MD Anderson has a different broader viewpoint, they seem to be open to incorporating things that if not proven to help you , may still be beneficial and thus may carefully expressed “ to have the placebo effect”.
Unless you are getting free medical care or at least free medication, I would say decided for yourself if you want to fight this with all you can or if you want to be a well meaning statistic in a pure clinical study. This too is noble but while there is a chance and hope……fight it! Wishing you a very motivated care taker and God’s grace.

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Lung cancer is MD Anderson’s specialty according to my research.

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