Stage IV lung cancer, what treatments work for you?

Posted by schmeeckle64 @schmeeckle64, Wed, May 22 9:10am

Hi! I am Christie and am new to the group. I was diagnosed with stage IV lung cancer in January 2019. I am super excited to be a part of this group to see what treatments are people are taking and what is working for you. My doctor ordered a Caris report and found that my PD L1 levels were extremely high so he changed the course of my treatment to just doing the Keytruda instead of chemo and Keytruda. I’ve been doing the Keyruda now for 5 months now with good results and no side effects. That is my story in a nut shell.

@schmeeckle64 Welcome! I joined just this past March. It was stage ! lung cancer, had a right lower lobe removal and am still getting over the surgery. So happy for you that the Ketruda is working fro you with no side effects. Keep on posting. Welcome again.

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@schmeeckle64, I'd like to add my welcome to Alamogal's. I'd also like to introduce you to @burrkay @shortshot80 @doughy42 @ina3 and @2onlow8 You may also be interested in adding your thoughts to these discussions:

– Metastasized lung cancer https://connect.mayoclinic.org/discussion/metastasized-lung-cancer/
– Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/
– stage 4 inoperative squamous nsclc now on opdivo last line tx https://connect.mayoclinic.org/discussion/stage-4-inoperative-squamous-nsclc-now-on-opdivo-last-line-tx/

Schmeeckle64 We look forward to getting to know more about you. Do you have non-small cell lung cancer?

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Welcome to MayoConnect, and sorry to hear about your diagnosis. However, I am always happy to hear about patients who get a molecular study and their doctor orders the correct therapy for their cancer!
Our experience was not good until the doctor did order the study and learned that my wife had a HER2 amplification with a Erbb2 mutation. Once he learned that he put my wife on a Targeted therapy that has worked wonders for the past 28 months.
Good luck!

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@alamogal635

@schmeeckle64 Welcome! I joined just this past March. It was stage ! lung cancer, had a right lower lobe removal and am still getting over the surgery. So happy for you that the Ketruda is working fro you with no side effects. Keep on posting. Welcome again.

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Thank you! I am excited to part of this group and to hear what others are going through.

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@burrkay

Welcome to MayoConnect, and sorry to hear about your diagnosis. However, I am always happy to hear about patients who get a molecular study and their doctor orders the correct therapy for their cancer!
Our experience was not good until the doctor did order the study and learned that my wife had a HER2 amplification with a Erbb2 mutation. Once he learned that he put my wife on a Targeted therapy that has worked wonders for the past 28 months.
Good luck!

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That is great news. What is HER2 amplification and Erbb2 mutation.

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Yes, I do have non-small cell lung cancer.

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In my wife’s case, the Foundation One molecular study identified two mutations…one of which was a “a HER2 Targetable mutation…Erbb2”… from a family of genes often seen in breast cancer, but also found in lung cancer. Also found in stomach or esophageal cancer…it has been reported that these mutations can occur in lung cancer…the challenge was that at the time, there were no FDA approved drugs for this mutation in lung cancer.
But a Genetech sponsored clinical trial known as My Pathway was identified…that my wife qualified for…she has responded well to the infusions now for 28 months. Concerns are with possible known side effects caused by the drugs. So, they monitor her heart closely.
We are so grateful for our oncologist who suggested the study and his jurisprudence with selecting the clinical trial, which has given her an excellent quality of life for the past two plus years!

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Hi Christie, I was diagnosed with stage 4 squamous lung cancer in June of 2015. I did anything and everything the doctors told me to do and tried not to listen to all "cures" everyone else told me about! I have been in total remission for over 2.5 years now. Good luck in your battle and stay strong.

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@schmeeckle64

Thank you! I am excited to part of this group and to hear what others are going through.

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@schmeeckle64– Good morning and Welcome to Connect. I am a Mentor for Mayo Connect and would like to join everyone in welcoming you. I have had lung cancer (Multifocal Adenocarcinoma of the lungs) since 1997 and my last one was 2 years ago, this fall. It is a NSCLC. I've had a lot of different treatments but have never had immunotherapy. I don't know if I'm eligible but I don't think so. I am so glad that you are responding to Keytruda. How are you feeling?

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@donnalb

Hi Christie, I was diagnosed with stage 4 squamous lung cancer in June of 2015. I did anything and everything the doctors told me to do and tried not to listen to all "cures" everyone else told me about! I have been in total remission for over 2.5 years now. Good luck in your battle and stay strong.

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Good morning @donnalb and welcome to Mayo Connect Lung Cancer Group. I am a mentor here. I have NSCLC (Multifocal adenocarcinoma of the lungs) and have had 4 lung cancers since 1997. My last one was 2 years ago this fall. What was your treatment plan? I assume that you have CT scans every 6 months or so? How are you feeling?

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@schmeeckle64

That is great news. What is HER2 amplification and Erbb2 mutation.

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@schmeeckle64– This is what I found: https://www.ncbi.nlm.nih.gov/pubmed/26723242

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All– There is of course a ton of interest in bio-markers and immunotherapy and the testing that goes with it. Since I know next to nothing about this topic, mainly because I've never had any suggestion that I might be able to have any. Nevertheless since this wonderful science is now available to so many people with lung cancer I do need to learn more. I found this site and hope to be able to learn more. Do any of you have experience enough to simply explain immunology, beyond the simple fact that it uses your own body to help fight cancer?
https://www.azoncologyid.com/home/non-small-cell-lung-cancer-nsclc/egfr/role-in-tumor-cell-survival.html

Liked by alamogal635

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@merpreb

All– There is of course a ton of interest in bio-markers and immunotherapy and the testing that goes with it. Since I know next to nothing about this topic, mainly because I've never had any suggestion that I might be able to have any. Nevertheless since this wonderful science is now available to so many people with lung cancer I do need to learn more. I found this site and hope to be able to learn more. Do any of you have experience enough to simply explain immunology, beyond the simple fact that it uses your own body to help fight cancer?
https://www.azoncologyid.com/home/non-small-cell-lung-cancer-nsclc/egfr/role-in-tumor-cell-survival.html

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@merpreb I am interested too. Don't know much at all about it. Thank you.

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@alamogal635– I'm starting back at the beginning- lol

to me

Liked by alamogal635

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@merpreb Thank you. Love your sense of humor!

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