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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Denzie
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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.
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.
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.
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.
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.
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
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? : )
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.
Hello Denzie. First of all thank you for sharing your story. From what I see people look to you for inspiration and insight. I'm new to this support group and trying to educate myself. Can you educate me on what mutation testing is, how it's done and what it's used for? This is the very first thread I am reviewing so I am sure you will see me more. Thank you ahead of time.
Welcome to the lung cancer support patient board. I look forward to hearing more from you.
Picture the double helix of a strand of DNA. It looks a bit like a ladder that has been twisted with strands connecting the two edges. Every molecule on that strand has an address. Sometimes, when a cell splits and forms a new one, a piece of DNA goes together wrong. It might be missing a piece, it might put the piece in the wrong place, it might lose a piece all together, there are other many ways the cell can split wrong.
The address where that division went wrong is the mutation. Over time medical science has developed medications that address specific mutations. They’ve also learned that some types of traditional chemotherapy will not work against certain mutations.
Know the mutation and using that knowledge to prescribe a line of treatment can improve a patient’s outcome. Patients are living longer with fewer side effects and better quality of life. All treatments have side effects but knowing that a treatment will not work can save a patient weeks of unnecessary treatments and side effects. It’s also more economical in the long run. Treatment is expensive and not giving a treatment that won’t work saves money for everyone.
Does this help? Is there a part I should describe better?
You are absolutely correct. They are one and the same. The newer terminology better reflects what researchers are looking at or for. Please let us know what you learn.
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