Stage 4 likely - what are the treatment options if surgery is not one?

Posted by strongone21 @strongone21, Jul 7 5:26pm

Recently diagnosed from a PET scan that a large nodule, lymph node and some metastatic presence affecting tissues around spine and ribs. No symptoms at all other than a mild diaphragm area pain. With the metastatic nature I am worried about treatment options if removing nodule/lymph node will not help. Any experience from a stage 4 lung cancer in terms of survival rates? Please share any relevant experience that might help me. Thank you

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hi @strongone21 - have you had any kind of biopsy (liquid, needle, bronchoscopy)? With lung cancer, knowing the specific genetic type you have, along with staging, determines which treatments are recommended.

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Biopsy scheduled for tomorrow, so hopefully we know more after that. Thank you

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I am new to this, are there genetic types that are favorable in terms of proven treatments? I am reading about EGFR, ALK etc. While the worst has happened, should I be praying for a certain type of gene that might lengthen lifetime?

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@strongone21

I am new to this, are there genetic types that are favorable in terms of proven treatments? I am reading about EGFR, ALK etc. While the worst has happened, should I be praying for a certain type of gene that might lengthen lifetime?

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@strongone21, welcome to the club no one wants to join! Unfortunately, stage 4 is stage 4. For what it's worth, I've had the EGFR Exon 19 mutation for 7 years, but I was diagnosed at stage 2b. I became stage 4 when the cancer metastasized to my brain two years later.
I'm a patient research advocate (PRA) and am currently reviewing research proposals from the patient/community perspective. I keep abreast with the announcements of the International Association for the Study of Lung Cancer (IASLC) and haven't heard of any comparative studies like you're asking for. But you're on the right track. The current thinking is that lung cancer is not one disease, but many diseases under one umbrella term.
For what it's worth, I spoke with an oncologist at MD Anderson this past February who told me he has a patient that has been on Tagrisso for 11 years. I've been on it for 5 and I'm still working full-time as a NASA engineer. In fact, I was recently promoted to Associate Technical Fellow, so somebody's happy with my work.
The head of the IASLC PRA program has the ROS1 mutation, but I don't remember how long ago she was diagnosed. I believe she was diagnosed at least 10 years ago and maybe even 20, but don't quote me on that. And, at the last World Conference on Lung Cancer, I met a patient advocate who was diagnosed 26 years ago! So it does happen.
If you're inclined to do your own research, as a lung cancer patient, you can join the IASLC for free. Once you log into their website at iaslc.org, you can go to "Lung Cancer 360" where you'll find a huge number of podcasts, webinar recording, conference proceedings, virtual simulations, online courses, and more. You'll get your biomarker results back long before you'll have enough time to go through all the material there!
Hope is the byword of every lung cancer survivor. Studies have shown that a positive mental attitude does improve all aspects of survival and treatment recovery, so stay positive! I wish you all the best.

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@flusshund

@strongone21, welcome to the club no one wants to join! Unfortunately, stage 4 is stage 4. For what it's worth, I've had the EGFR Exon 19 mutation for 7 years, but I was diagnosed at stage 2b. I became stage 4 when the cancer metastasized to my brain two years later.
I'm a patient research advocate (PRA) and am currently reviewing research proposals from the patient/community perspective. I keep abreast with the announcements of the International Association for the Study of Lung Cancer (IASLC) and haven't heard of any comparative studies like you're asking for. But you're on the right track. The current thinking is that lung cancer is not one disease, but many diseases under one umbrella term.
For what it's worth, I spoke with an oncologist at MD Anderson this past February who told me he has a patient that has been on Tagrisso for 11 years. I've been on it for 5 and I'm still working full-time as a NASA engineer. In fact, I was recently promoted to Associate Technical Fellow, so somebody's happy with my work.
The head of the IASLC PRA program has the ROS1 mutation, but I don't remember how long ago she was diagnosed. I believe she was diagnosed at least 10 years ago and maybe even 20, but don't quote me on that. And, at the last World Conference on Lung Cancer, I met a patient advocate who was diagnosed 26 years ago! So it does happen.
If you're inclined to do your own research, as a lung cancer patient, you can join the IASLC for free. Once you log into their website at iaslc.org, you can go to "Lung Cancer 360" where you'll find a huge number of podcasts, webinar recording, conference proceedings, virtual simulations, online courses, and more. You'll get your biomarker results back long before you'll have enough time to go through all the material there!
Hope is the byword of every lung cancer survivor. Studies have shown that a positive mental attitude does improve all aspects of survival and treatment recovery, so stay positive! I wish you all the best.

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Thank you. Can't wait to learn more about treatment options and biopsy results. Thanks for sharing helpful information on your story, others with successful recovery and the support groups.

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@strongone21

I am new to this, are there genetic types that are favorable in terms of proven treatments? I am reading about EGFR, ALK etc. While the worst has happened, should I be praying for a certain type of gene that might lengthen lifetime?

Jump to this post

Many types of lung cancer are eligible for something called targeted therapy, which is essentially a drug that works on your specific kind of cancer to stop it from growing. Like Matthew mentioned, I am also taking Tagrisso, which is a drug that targets EGFR mutations. I hope your biopsy went well and that you get all the information you need quickly. Keep us posted.

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I was diagnosed in fall of 2023. Like others, I take Tagrisso for my mutation. It will be important to make sure your biopsy includes biomarker testing. This is key to ensuring you have the best treatment options. I asked about it at every initial appointment with my pulmonologist, surgeon, and other oncologist. I prayed simply to have a targeted mutation. My prayer was answered. I’m not are there is one that is more survivable than another but the survival overall for folks like us is so much better than it ever has been! And it continues to improve! Stay away from the internet rates. They are 5 years behind. My focus now is health. I gained weight due to my treatment and pity eating. I’m fine with that. Stay strong and know that you have a tribe to lean on when you need help with the mental part! Make sure you have a good rapport with your care team. Also know that it’s okay to get a second opinion if you’re not comfortable or just want validation of your care plan.

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Thank you @dragonspark. I have also asked for them to provide biomarkers as part of biopsy, waiting to learn more. At this point, I am reading only success stories of those who survived past stage 4 diagnosis and not survival rate data. As you say, they are behind and I choose not to believe them. Praying that I have something with treatable options. Thanks again!

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Yes, my wife was diagnosed 3 years ago—multiple spots on both lungs, also in two lymph nodes. Has been under Tagrisso treatment now for three years, lymph nodes now clear, all spots bar one of 14 mm gone.
Only symptom remaining - fatigue, but mostly caused by tagrisso,
What she does other than the tagrisso - daily full body vibration to keep everything (lymph fluid, blood moving, and eating fermentable fiber to supply much needed short chain fatty acids ( acetate, propionate, and butyrate), that's mostly it, except mostly retain a positive mental attitude. Good luck with yours. Except maybe to use an AI program (artificial intelligence) like ChatGPT for enquiries: far better than Google or even your Oncologist for information.

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@warrego

Yes, my wife was diagnosed 3 years ago—multiple spots on both lungs, also in two lymph nodes. Has been under Tagrisso treatment now for three years, lymph nodes now clear, all spots bar one of 14 mm gone.
Only symptom remaining - fatigue, but mostly caused by tagrisso,
What she does other than the tagrisso - daily full body vibration to keep everything (lymph fluid, blood moving, and eating fermentable fiber to supply much needed short chain fatty acids ( acetate, propionate, and butyrate), that's mostly it, except mostly retain a positive mental attitude. Good luck with yours. Except maybe to use an AI program (artificial intelligence) like ChatGPT for enquiries: far better than Google or even your Oncologist for information.

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@warrego, saying that ChatGPT is far better than Google may be justified if the person has any skill at constructing a suitable prompt. For example, one that includes "provide authoritative sources". But, in general, all AIs base their information on what they've scraped off the Internet. With the rapid proliferation of pseudo-science and outright lies, any AI can easily provide inaccurate results.
And, if the Internet can provide better information than your Oncologist with their 10 years of training and years of experience, get another Oncologist! Although I still have to wonder how you define "better."

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