Stage IV lung cancer, what treatments work for you?

Posted by schmeeckle64 @schmeeckle64, May 22, 2019

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.

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

Merry, Alumni Mentor | @merpreb | Jun 9, 2019

In reply to @schmeeckle64 "That is great news. What is HER2 amplification and Erbb2 mutation." + (show)

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

Merry, Alumni Mentor | @merpreb | Jun 9, 2019

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

alamogal635 | @alamogal635 | Jun 9, 2019

In reply to @merpreb "All-- There is of course a ton of interest in bio-markers and immunotherapy and the testing..." + (show)

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

Merry, Alumni Mentor | @merpreb | Jun 9, 2019

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

to me

alamogal635 | @alamogal635 | Jun 9, 2019

@merpreb Thank you. Love your sense of humor!

schmeeckle64 | @schmeeckle64 | Jun 16, 2019

Thank you for sharing the cute videos...

schmeeckle64 | @schmeeckle64 | Jun 16, 2019

In reply to @merpreb "@schmeeckle64- Good morning and Welcome to Connect. I am a Mentor for Mayo Connect and would..." + (show)

Hi Merry! Thank you for reaching out. I am feeling really really good. Will be on round 7 of Keytruda next week. So far I have had no side effects. The past couple weeks my mouth has been really dry so I have been trying different things to help with that. Go in for a scan in July and that is freaking me out a little, but prayers help calm me down. What types of treatments have you had?

schmeeckle64 | @schmeeckle64 | Jun 16, 2019

In reply to @donnalb "Hi Christie, I was diagnosed with stage 4 squamous lung cancer in June of 2015. I..." + (show)

That is WONDERFUL news. What treatment worked for you??? I love reading comments like yours. It truly gives me hope.

Merry, Alumni Mentor | @merpreb | Jun 17, 2019

In reply to @schmeeckle64 "Hi Merry! Thank you for reaching out. I am feeling really really good. Will be on..." + (show)

@schmeeckle64- Good morning. I know, I know, and you have tons of company. The thing is that these aren't just a routine test, like a yearly blood work test, but a test that literally can tell us if we are going to live for another 3 or 6 or 12 months or die.:
https://powerfulpatients.org/2018/07/24/coping-with-scanxiety-practical-tips-from-cancer-patients/
I have written a blog that you might be interested in reading about my journey with lung cancer:
https://my20yearscancer.com/
My next CT scan is in July too and I am a basket case about 2 weeks out. Sometimes I have any easier time with good feelings and others not so much. I try and stay busy with mind occupying activities. But they don't work a lot of the time.

What have you found to keep you busy? Do you work?

schmeeckle64 | @schmeeckle64 | Jun 23, 2019

In reply to @merpreb "@schmeeckle64- Good morning. I know, I know, and you have tons of company. The thing is..." + (show)

Thank you for sending the links. I will definitely check them out. I actually keep myself very busy. I am still working full time and have 4 little grandkids and another on the way this week. We live on 5 acres so I love to garden and mow. Thank you once again for the links. You are an inspiration.