Stage IV NSCLC non smoker looking to speak with similar fighters of 5+ years

[brianinaustin]

Hello! My name is Brian, a 41-year-old non-smoker, and I'm one-year post-diagnosis of EGFR mutation-driven lung adenocarcinoma. If you have had a similar diagnosis and are 5+ years post-diagnosis, I'd love to speak with you. I've been reading a lot about alternative therapies (ketogenic diet, hyperbaric chambers, IVC, endless supplement lists, etc.) and I'm trying to get smarter around the alternative/integrative therapy landscape...but mostly I want to know about you and what you think is working. Thank you in advance for your responses!

[Judy M2]

Hi Brian, I'm Stage IIIB EGFR+ but only 3 years post-diagnosis. I've had chemo and radiation before starting Tagrisso in March 2020. I've been NED for a while now. I don't follow any special diet or any alternative treatments. The supplements I take are those recommended by my primary doctor for specific conditions (like osteopenia). 

You might get more information/answers from the EGFR Resisters Lung Cancer Patient Group on Facebook.

I was on a ketogenic diet for most of 2019, and then I was diagnosed in October 2019 (after being misdiagnosed for 4 months). Based on this experience, I don't believe that a keto diet was helpful in preventing or delaying my lung cancer.

My medical oncologist works directly with an integrative medicine physician. I saw her for a while when I had radiation side effects. I'd be willing to go back if I needed to. 

[brianinaustin]

Thank you, this is very helpful! I'll check out that Facebook group. Happy to hear you're NED!

[LouT]

Brian,

You may also benefit from reading some of the information here on Lungevity.  Click on Treatment Options.  I hope this helps.

Lou

[Tom Galli]

Brian,

Welcome here. I’m a near 19 year survivor of late stage diagnosed NSCLC, squamous cell. I’ve had every form of treatment (several repeats) but immunotherapy. I’ve also interacted with lung cancer survivors for many years and know many who have taken the alternative therapy road. 

I’m limited to responding on an iPhone because I’m visiting family, but I’ve blogged extensively on this site about alternative treatments. A short summary of my view might be: “if it feels good, do it but don’t expect it to be curative. 

For more details on alternative medicine, you might read my Stay The Course blogs on the forum. I’d link them normallly but find the small screen a challenge to navigate. 

Stay the course. 

Tom