Stage 1b non small lung Cancer and Keytruda: What to expect?

Posted by ehb999 @ehb999, Jul 31, 2023

I am looking to have some insight on what to expect.

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

My mother & brother were both diagnosed w/lung ca, stage 1, so, due to heavy scarring in my lungs (thanks to my history of smoking, chronic bronchitis & pneumonias), I had yearly CT Scans, since 2012. I had nodules, which were being watched closely. In 2020, a small nodule became cancerous, in situ, stage 1. I had an upper-right lobectomy & theoretically needed no further treatment. My internist, however, felt that with my family history, I should start an Immunotherapy regimen, all Out-Of-Pocket. Optivo, Yervoy, Tecentric, Tarciva, et al. I was getting overdosed and feeling sicker weekly. They stopped the cancer drugs & just gave Vitamin C, crap like that. But I continued to worsen. One night I drove to the hospital because I was so agitated. They gave me saline & a Valium! The next night I was much worse & my friend took my to a different hospital, where I was diagnosed w/liver toxicity & Guillaum-Barre. That was 3 years ago. I have numbness in my feet, and I never take another Monoclonal Antibody EVER,

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@lynguist

My mother & brother were both diagnosed w/lung ca, stage 1, so, due to heavy scarring in my lungs (thanks to my history of smoking, chronic bronchitis & pneumonias), I had yearly CT Scans, since 2012. I had nodules, which were being watched closely. In 2020, a small nodule became cancerous, in situ, stage 1. I had an upper-right lobectomy & theoretically needed no further treatment. My internist, however, felt that with my family history, I should start an Immunotherapy regimen, all Out-Of-Pocket. Optivo, Yervoy, Tecentric, Tarciva, et al. I was getting overdosed and feeling sicker weekly. They stopped the cancer drugs & just gave Vitamin C, crap like that. But I continued to worsen. One night I drove to the hospital because I was so agitated. They gave me saline & a Valium! The next night I was much worse & my friend took my to a different hospital, where I was diagnosed w/liver toxicity & Guillaum-Barre. That was 3 years ago. I have numbness in my feet, and I never take another Monoclonal Antibody EVER,

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@lynguis- Welcome to Mayo Connect. That is a nightmare story that you have lived through. I can't believe all the drugs that you were given at once. What had they been thinking? Did you keep all of your labs, scans, and tests from that hospital? If you have, don't throw them out if you decide to take legal action against them.

I'm so sorry that you went through this horrible time. If if can ask, are you taking anything for your illnesses now?

Here is a group that you might want to take a look at:

https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/?pg=2#comment-784468

How are you doing now?

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@merpreb

@lynguis- Welcome to Mayo Connect. That is a nightmare story that you have lived through. I can't believe all the drugs that you were given at once. What had they been thinking? Did you keep all of your labs, scans, and tests from that hospital? If you have, don't throw them out if you decide to take legal action against them.

I'm so sorry that you went through this horrible time. If if can ask, are you taking anything for your illnesses now?

Here is a group that you might want to take a look at:

https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/?pg=2#comment-784468

How are you doing now?

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Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....

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@ehb999

I have had surgery removed 3.8 tumor, 22 lumph nodes clean all margins clean and i did Chemo.
DOn't know my PDL-1 level
where would I find that

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Hi @ehb999, I recently ran across this past post from another member, https://connect.mayoclinic.org/discussion/a-keytruda-patient-running-the-2022-chicago-marathon/. There are certainly risks associated with any treatment, including Keytruda, but it's been successful for many people too.
What did you decide? Have you started an additional treatment?

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@lynguist

Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....

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I don't need any additional treatment. My cancer was removed and, so far, all subsequent CT Scans are stable and negative. I have to deal with my mental health. I have not been coping well. Instead of doing things to help myself, I'm not exercising, eating as well as I used to, vaping medical marijuana for my RSD pain. I'm not handling life well. I attend both a Zoom Women's Group & an Eating Disorders Group weekly, but I stopped seeing my therapist privately. It's as if I don't care anymore.

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@lynguist

I don't need any additional treatment. My cancer was removed and, so far, all subsequent CT Scans are stable and negative. I have to deal with my mental health. I have not been coping well. Instead of doing things to help myself, I'm not exercising, eating as well as I used to, vaping medical marijuana for my RSD pain. I'm not handling life well. I attend both a Zoom Women's Group & an Eating Disorders Group weekly, but I stopped seeing my therapist privately. It's as if I don't care anymore.

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@lynguist, I’m glad you are now cancer free, going through everything related to that is a huge accomplishment. You’ve come a long way. It sounds like you would benefit from reaching out to your therapist for help with processing the weight of what you’ve been through. It’s easy to get to a low point, it’s not uncommon. I hope you are able to get some help.

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@lls8000

@lynguist, I’m glad you are now cancer free, going through everything related to that is a huge accomplishment. You’ve come a long way. It sounds like you would benefit from reaching out to your therapist for help with processing the weight of what you’ve been through. It’s easy to get to a low point, it’s not uncommon. I hope you are able to get some help.

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Thank you for your wise advice. I am definitely going to restart individual therapy. I just have to find the right person.

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@lynguist

Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....

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It’s very important to take care of your mental health along with the physical. Perhaps an anti-depressant might help you and some talk therapy. Try https://www.cancersupportcommunity.org/. Maybe they have some groups in your area. I’m in Phoenix and they have zoom meetings and other events to help cancer patients and their caregivers.

I’m stage 1B. Right upper lobe removed in April. Only taking Tagrisso, which is now considered the first line treatment for Stage 1, not chemo or immunotherapy.

Best of luck to you.

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@whahoo

It’s very important to take care of your mental health along with the physical. Perhaps an anti-depressant might help you and some talk therapy. Try https://www.cancersupportcommunity.org/. Maybe they have some groups in your area. I’m in Phoenix and they have zoom meetings and other events to help cancer patients and their caregivers.

I’m stage 1B. Right upper lobe removed in April. Only taking Tagrisso, which is now considered the first line treatment for Stage 1, not chemo or immunotherapy.

Best of luck to you.

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I agree. I'm on an anti-depressant, but I stopped working out, which helped my mental state a lot. I am re-joining the Gym on Monday and will find a Support Group and an individual therapist....I need to change my crappy attitude.

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@lynguist

I agree. I'm on an anti-depressant, but I stopped working out, which helped my mental state a lot. I am re-joining the Gym on Monday and will find a Support Group and an individual therapist....I need to change my crappy attitude.

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I have a gym membership and I don’t go. No motivation. Where are you located ?

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