My Story

In 10/2010 I was diagnosed with stage 4 poorly differentiated adenocarcinoma of the lung. The dr told me I could expect 10-15 months with treatment. My parents both died of lung cancer within 5-6 months of their diagnosis so I figured 'hey, I'll live twice as long as they did'. I didn't know it was possible to live and to thrive after a lung cancer diagnosis.

In 2010 they didn't automatically take enough material to do mutation testing so I've none of that to report. My oncologist said my stage 4 acted like a stage 3 and recommended concurrent chemo/radiation. I had 4 rounds of cisplatin and etopicide and no maintenance drug. Turns out I am an Exceptional Responder. A rare bird, one for whom the treatment completely destroys the active cancer and leaving me in a state of NED.

In the last 5+ years I've learned as much as I could so that I will be prepared should I experience progression. A studying and advocacy behavior which informed my decisions when I was diagnosed with stage one breast cancer. So I'm a 2x survivor. Proud of it and strongly identify with the lung cancer community

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  • The doctor can do all they can just keep faith in God he the real doctor I have small cell carcinoma I am in remission now for 3 months I pray a Lot don't worry because I know God going to heal me just keep praying in

  • Jayvicky, thank you. My coworkers husband was diagnosed with small cell lung cancer limited. He survived 7.5 years before a heart attack took him. I send hope and prayers that you survive at least that long.

  • I am in remission

    Now I know God going heal me I have my faith with my faith in God I would not have anything

  • Wow, you have been through a lot. I love your positive attitude. I'm sorry for the loss of your parents. I can only imagine how difficult that would be. My dad also had lung cancer but it was caught at stage 1. Mine is stage 3a. I have been clear four three years but have a scan in a couple of weeks and am terribly scared.

    I needed to read your post today.

  • Heather, that scanxiety is the worst. Many a closet or drawer has found itself rearranged in the days before a CT.

    What has helped me the most was recognizing that it is what it is and time lost to obsessing or worrying was time I would never get back. Have you ever tried to meditate? It doesn't have to be a big deal, just a few minutes gazing into a candle flame or at a flower can bring you to living in the moment. After all no one is promised a tomorrow.

  • So right, thanks. I do try to meditate and keep busy. I know the fear is irrational and events are out of my control. It is just something that I battle with each time I have a scan. Each scan has been good so I fear that this could change so easily or quickly. I guess I know what it means if I have a reoccurance. Just have to keep praying and having faith.

  • Do let us know how the scan turns out. Sincere hopes for an excellent outcome.

  • Will do. It isn't until the 17th and then I have to wait a week for the results.

  • How did your scan turn out?

  • Good morning! Just got the results yesterday and am thrilled to say that all is still clear, NED. Of course I had myself convinced that my luck had run out.

    I am truly grateful for such a blessing.

  • So happy for you! Now when it comes time for the next scan remember this, "the body does what the mind tells it" so keep thinking positive and believe that you are cancer free and you will be.

    God bless you

  • Thanks do much. I will do my best to follow your advice.

  • Denzie,

    Thank you so much for sharing your long path with us. Congratulations to you on having NED!

    This stories here have shown me the power of the human spirit to walk with fear and still have hope as their loyal and constant companion. I am humbled by the strength that makes this community hum with determined support of one another.

    That, quite simply, is as good as it gets.

  • Denzie I guess I got ahead of myself I guess I should have read your story first I'm also so far to be a three time cancer surviver. The lung cancer stage three in lyphmnodes its been three years did'nt do radiation.Done six months of chemo there is no sign of the cancer. DR told me six months ago it was gone from my lyphmnodes. So its anybodies guess.I'm happy you went over five years. I have two years to go. Jo

  • Denzie, you're everywhere! I've just joined this community and it looks like a good one. Glad to see I already have a friend here. - Anita

  • Anita! Welcome! So glad you found this group. Your experience and knowledge will make it even stronger.

  • HI Denzie, I just read your story, did you also have brain mets? Its is inspiring to find someone who was Stage 4 and NED. :)

  • Fortunately no. No brain met. Both lungs, the pleura and lymphnodes into the neck. My primary was 9cm x 11 cm x 12cm. To this day I can't figure out why I survived.

    My mom also had adenocarcinoma, hers was discovered because of her brain mets.

  • Wow, you are blessed for sure. I finally got some good news yesterday that my CEA marker has come down, ( not a normal thing to use for lung cancer but it seems to gauge mine pretty well) it was tripling every month until I started the Tarceva and my new diet plan. I am hoping for a long run with this fingers crossed! Thanks for your response much appreciated!! :)

  • An Exceptional Responder! I've read about those on the cancer.gov site. Congratulations! Do you get a certificate or a statuette? : )

    Seriously, how did you find out you were an ER?

  • I'm waiting on confirmation. It took me some time to convince my oncologist to let my slides go. It was another oncologist at an educational seminar who told me he thought I would qualify.

    It seems I should have something back by now that states it right? Ugh, I have to wait until Tuesday now to see what they've learned.

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