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Anyone out there living with stage 4 lung cancer?

Posted by nursed2075 @nursed2075, Mar 10, 2020

Is anyone living with stg4 lung cancer? How are they doing?

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

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Colleen Young, Connect Director | @colleenyoung | Nov 5, 2021
In reply to @sfwendie "(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends."..." + (show)
Profile picture for sfwendie @sfwendie

(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends." On so many variables that are still being discovered. I have a FOXA1 and a.familial POT that are not understood in lung cancer. For a while there I felt like an orphan: everybody else has a targeted gene; why not me?

The reality is that yes, we know more...but there's much more in the undiscovered country of our genomes. DNA may make us more vulnerable but you have to take your personal history into account, like your job or your food or where you're living. And...AND...your DNA may be perfect but you are still at risk. So I always return to the "get as healthy as you can for as long as you can." Talk to your nutritionist if your program has one. Cheers & good luck, Wendy

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Hi Wendy, welcome. You're so right to follow your pledge "get as healthy as you can for as long as you can." That's one to live by. So often it is impossible to pinpoint the exact cause of one's cancer.

When were you first diagnosed with lung cancer? What treatments have you had? And, more importantly, how are you doing today?

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Tom Anderson | @ta52 | Nov 8, 2021
In reply to @rubysue "My doctor told me that most people with my disease only live two years...I don't recall..." + (show)
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My doctor told me that most people with my disease only live two years...I don't recall asking him how long I have because nobody can answer that. Totally took the wind out of my sales though, as I was newly diagnosed. Never give up, possibilities exist!

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Why did he tell you that? Was there no treatment plan?

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Tom Anderson | @ta52 | Nov 8, 2021

I went from Stage IV NSCLC to No Evidence of Disease in less than nine months. Yes, cancer treats different people differently but there are lots of amazing things going on in treatments and I would say the same thing as others: always, always get a second opinion.

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rubysue | @rubysue | Nov 8, 2021
In reply to @merpreb "2@rubysue- First, let me welcome you to Mayo Clinic Connect. You have joined the right group..." + (show)
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2@rubysue- First, let me welcome you to Mayo Clinic Connect. You have joined the right group for sure. All of us know what it feels like to be told that we have cancer, and it is a shock for sure.

When I first asked my surgeon how long I had he told me that "no one can answer that", as you stated. I had such confidence in being honest he has treated and advised me for the 24 years that I have had lung cancer and has become a close friend.

I will take the brave step here and recommend that you look for another doctor. And the reason that I recommend this is because if he were shallow, insensitive, and unsympathetic enough to tell you how long you will live I wonder how careful his recommendations for treatment will be. No one should ever have had a doctor tell them this, especially a newly diagnosed patient. I am so sorry that you had to listen to this.

What treatment have you begun and when were you diagnosed?

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Hi Merry. Thank you for the warm welcome. I apologize for taking so long to respond.
I was diagnosed with stage 3b June 2020. I went through the initial chemo and 6 weeks of radiation at that time. I started Imfinzi after that was complete. I was diagnosed with a brain tumor in January and had gamma knife surgery. Doc told me at that time, none too gently, that I was stage 4 now and it was going to kill me! Moving on, I failed immunotherapy this past June and the CT scan showed my cancer metastasized to my liver, kidney, spine, and adrenal. I went back on chemo with carbo. Mvasi, and pemetrexed for 6 cycles every 3 weeks. I have since dropped the carboplatnin.
Got scan results today and the tumor on my liver has grown from 1.9 to 3.4 cm. Everything else was stable. I'm pretty down tonight.
When I failed the immunotherapy and he put me on this new regime, he again played God and told me even with the chemo I had a 12 percent chance of living for a year.
I live in northern Michigan and my options are limited but am going to look into Cancer Treatment Centers of America for a second opinion.
Sorry this is so lengthy, but you seem so understanding. You have inspired me! You are a miracle and I should be so blessed.

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rubysue | @rubysue | Nov 8, 2021
In reply to @ta52 "Why did he tell you that? Was there no treatment plan?" + (show)
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Why did he tell you that? Was there no treatment plan?

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I was just diagnosed and hadn't even started treatment. This was my initial visit. Mind you, I have never been sickly and have enjoyed good health for most of my life. No hypertension, diabetes, heart disease, etc. I was/am active hiking, walking, weights. I just don't get it why he would tell me that right out of the gate, since I didn't ask. I am well aware of my diagnosis, I wanted hope.

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rubysue | @rubysue | Nov 8, 2021
In reply to @ta52 "I went from Stage IV NSCLC to No Evidence of Disease in less than nine months...." + (show)
Profile picture for Tom Anderson @ta52

I went from Stage IV NSCLC to No Evidence of Disease in less than nine months. Yes, cancer treats different people differently but there are lots of amazing things going on in treatments and I would say the same thing as others: always, always get a second opinion.

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I'm definitely going to do that. I have a lot going for me. You are definitely an inspiration. Thank you!

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Tom Anderson | @ta52 | Nov 8, 2021
In reply to @rubysue "I was just diagnosed and hadn't even started treatment. This was my initial visit. Mind you,..." + (show)
Profile picture for rubysue @rubysue

I was just diagnosed and hadn't even started treatment. This was my initial visit. Mind you, I have never been sickly and have enjoyed good health for most of my life. No hypertension, diabetes, heart disease, etc. I was/am active hiking, walking, weights. I just don't get it why he would tell me that right out of the gate, since I didn't ask. I am well aware of my diagnosis, I wanted hope.

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My experience was similar. No clue I was at Stage IV. I was very dissatisfied with my initial doctor and made the wise decision to go to Mayo. Do yourself and your loved ones a tremendous favor and get a second opinion.

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Tom Anderson | @ta52 | Nov 8, 2021
In reply to @rubysue "I'm definitely going to do that. I have a lot going for me. You are definitely..." + (show)
Profile picture for rubysue @rubysue

I'm definitely going to do that. I have a lot going for me. You are definitely an inspiration. Thank you!

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You need to be confident in your oncologist and be able to communicate. There is so much to learn and so much to do. This is a time when it is all about you and your needs.

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carlies | @carlies | Nov 9, 2021
In reply to @sfwendie "(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends."..." + (show)
Profile picture for sfwendie @sfwendie

(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends." On so many variables that are still being discovered. I have a FOXA1 and a.familial POT that are not understood in lung cancer. For a while there I felt like an orphan: everybody else has a targeted gene; why not me?

The reality is that yes, we know more...but there's much more in the undiscovered country of our genomes. DNA may make us more vulnerable but you have to take your personal history into account, like your job or your food or where you're living. And...AND...your DNA may be perfect but you are still at risk. So I always return to the "get as healthy as you can for as long as you can." Talk to your nutritionist if your program has one. Cheers & good luck, Wendy

Jump to this post

‘Ditto!’ to Wendy’s comment about ‘see a nutritionist’! We are 2 3/4 years in to my husband having lung cancer. We HAD asked the doctor about foods, nutrition, etc… He said it didn’t matter-. Bully! Two weeks ago we set up an appt.w/a nutritionist! She told us things we didn’t know and DID give guidelines that are important! IMO everyone should be told to ‘See a nutritionist!’

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rubysue | @rubysue | Nov 9, 2021
In reply to @ta52 "You need to be confident in your oncologist and be able to communicate. There is so..." + (show)
Profile picture for Tom Anderson @ta52

You need to be confident in your oncologist and be able to communicate. There is so much to learn and so much to do. This is a time when it is all about you and your needs.

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Thank you, Tom. I'm having a bad cancer day today and you have helped more than you know. I don't feel so alone. I'm so glad I stumbled on this site.

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