Hi everyone.

[Anthony]

Hi everyone, hope all is well. I been diagnosed with stage 4 lung cancer (egfr 19) and it’s on my bones. I’m writing because I wanted to hear some positive stories or some hope. I’m getting radiation today on my bones.  I have two doctors giving me two similar recommendations except one doc wants me to simultaneously start chemo (platinum) with tagrisso 80 mg.

im 49 years old a little scared and can anyone help me with some comforting positive words. 

[edivebuddy]

Sorry you find yourself with this diagnosis.  Nearly 4 years ago I was diagnosed with stage IV NSCLC spread to my brain neck liver and skin.   Because of the skin Mets I was not given long even if treatments worked. I may be a tad Slower and a little worse for wear but I'm here. Living life and enjoying myself as before.  A few extra appointments throughout the year nothing that interferes that much.

 

You can read some of my story here. 

I have not finished catching up. But it will give you a good idea.

This is by far from a death sentence .  The goal is to manage it until the next treatment or cure becomes available.

[LouT]

Anthony,

Sorry to hear about your cancer, but glad you found us.  There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story.  The truth is LC is not the automatic death sentence it once was.  Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based).  My LC was caught at Stage 1 and was treated surgically.  But there are folks here with many and varied diagnosis and journeys.  In the meantime I’d ike to share a blog with you that was written by one of our own members.  It is based on his receiving a diagnosis of Stage 3 over 20 years ago.  That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured.  He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here.  In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment.  We have a section called “Lung Cancer 101” and that is found on this page.  

So please keep coming back.  Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way.  I pray you’ll be on the site for a long time to come.

Lou

[tgif i guess]

i was diagnosed stage iv about 18 months ago - lungs, lymph nodes and spine

i've had no radiation

chemo is carboplatin and alimta

imuno is keytruda

after 6-8 months pet scans began to come back clear - carboplatin was discontinued

what amazed me was the treatments had few side effects - never had nausea - did not lose hair - no pain

if they opt for chemo, it might not be as bad as you think - and hopefully, effective 

[Livin Life]

Just want to send support, Anthony.  I'm new here, not diagnosed (yet?) with rescan in early July.  I'm slowing finding my way around the site and trying to read and respond some to new-er posts....  please keep us updated on how you're doing....

[Karen_L]

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16  Don't quit before the miracle....

[Kamoto]

Two years in with that diagnosis.  Tagrisso for two years now.  That stuff works fast.  I didn't do any radiation//chemo for lung cancer.  Mayo Clinic in Rochester MN also did not prescribe radiation/chemo.  I had mets in the brain, rib and back.  You wouldn't even know I had cancer, except when I nearly died from Chemo/Radiation from a seperate cancer I had in the Esophagus which was Stage II.  Lucky me to have Stage IV Lung and Stage II esophagus. 

[GBJ]

Hi Anthony, Sorry to hear about your LC diagnosis. but there are lot's of success stories.

As for me, it's been a while since I posted.

Dx: Stage IV NSCLC (no mutations, PDL+) in Feb 2022, Age 45 at Dx

Started on carboplatin, alimta and keytruda. Significant regression in 6 months though not complete resolution by July 2022

Continued on maintenance therapy for a year (alimta and Keytruda - every 3 weeks). Unfortunate progression in same place as earlier locations detected in August 2023. Keytruda and alimta stopped.

Switched to Paclitaxel, Bevacizumab and Carboplatin for a 6-cycle course. Have seen regression or stable disease since.

Just completed my PET-Scan yesterday. Will get results today.

Happy to be alive for last 2.5 years since Dx. More time with family. Haven't had much side effects that are not manageable. Loss of hair yes (has grown back since), some neuropathy due to medication - but otherwise hale and healthy.

So good luck. Stay the course as Tom says.