To be, or not to be...NED. That is the... - Lung Cancer Support

Lung Cancer Support

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To be, or not to be...NED. That is the question -William Shakespeare and me 😂

ynkefan08753
ynkefan08753

Good morning everyone 😊. I know it’s been a bit since I posted anything on here but please know that I read all the posts and keep everyone who needs it; in my prayers. Sometimes I just need to stay in the background and process. I was given the all clear/NED almost a year ago and have had clear scans ever since....until 3 weeks ago. This last scan showed some progression of a small “lesion” in my right lung. Very small indeed but apparently it’s big enough to be a problem. I’ve lost my “NED” status for now but my onc wants to wait and rescan in 8 weeks before rushing back into treatment. Treatment this time would be the trial drug (it’s no longer a trial ....available to everyone yay!) Because the trial is complete and it’s readily available....that would be our best option. Neither me or the doctor knows for sure what’s going to show up on the next scan and like the last 4+ years...waiting is torture. But....I refuse to just sit around worrying about it. If it’s back it’s back and the only thing I can do is exactly what I did the first time. Eye on the ball and faith in God. So that I’m not sitting home stressing, I am about to leave on a week long cruise from NYC to the Bahamas. Nothing helps you cope with crappy news like a beautiful suite on a beautiful ship in beautiful water. My cousin and I embark at 12:30 this afternoon and by 1:30 I plan to be in a lounge chair with a mojito listening to reggae music. I figure by the time we reach the first port off the coast of Florida; I won’t be thinking about cancer at all 😂😂

Have a great weekend everyone and thank you yet again for taking the time to read everyone’s posts. Sometimes you just need to know you’re not the only one...

😊😊😊

Deana

10 Replies
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Denzie
DenzieModerator

Rock that boat!

ynkefan08753
ynkefan08753 in reply to Denzie

Girl! You have no idea lol! I plan to make this the best girls trip ever! Everything first class from the suite we’re in to the private cabana ice already reserved on Norwegians private island. I figured if I may have to start treatment again I might as well start it off with a Big Bang lol. The ocean is where I’m at my most peaceful and happy. If I could talk my husband out of the new house we’re looking at and into a houseboat...I’d be all over it. Unfortunately he’s not as enthusiastic as me lol. He loves cruising but after 7-10 days ...he wants dry land lol.

Have a nice weekend!

Deana

Thanks for sharing. I am also waiting for my next scan in two months to see if my new nodule changes. Enjoy yourself on that cruise! We're with you in spirit.

Rick

Thanks Rick! I plan on having a blast. Good luck to you with your scans as well.

Have a nice weekend!

Deana

Just to let you know during the last three years, I have had small lesions appear twice and when I went for the follow up scans, they were gone. Praying your results at next scan are the same. Now have fun!

Judy

Enjoy your trip and keep up that positive attitude which has served you well so far. will keep fingers crossed that it's inflammation that's the cause but if not, as you say, now there are more options than a few years ago. good luck.

“Eye on the ball and faith in God.” Excellent approach. You and I were diagnosed at roughly the same time, and my hope has always been to stay stable long enough for scientific research to keep making progress faster than the cancer. In your case, so far that seems true. Prayers for great news and response to whatever comes next

Jennifer

Deana,

I love your great attitude and hope very much you have a wonderful vacation !! I have friends who just were on a cruise from Boston to Bermuda and they loved it. I think you are wise to not focus on "what may be", but I know that is not always easy when you are dealing with Cancer. We all hate the fear of the unknown, but I'm trying harder and harder to focus on happier and better things and not let worrying about the possibility that the cancer will come back. Deep down I know it's certainly a high probability, but it's better for me to focus on knowing that I'm still Stable and doing okay.

Hopefully the small nodule will stay small and not require treatment for a very long time. I am a Stage IV NSCLC patient and I've never been NED, but I am Stable and have been for almost three years now without any treament. MY last treatment was with Opdivo (Immunotherpay) and it shrunk my tumors very quickly and effectively. I stopped it back in August of 2016 and have been stable ever since. Yet, I get anxious each time I'm due for a scan, for me the scanxiety is never easy, but I have learned to try and not think about it, until it's time. I still have some Ground Glass Capacities (likely left over from low grade pneumonitis and one tiny node that never has fully resolved, but also has not changed in the last three years. I can happily live that way for a long time and that's what I plan to do.

BTW -- Out of curiosity what is the "Trial" drug that you may be considering, that is no longer in trial? Being that I have used up a lot of my treatment options, I'm always interested in learning or hearing about any new treatment options that I might be able to use down the road.

ENJOY the remainder of your fabulous trip! It sounds wonderful!! CHEERS!!

Lisa

Hiya. Thanks for all the encouraging words. My trial drug is Imfinzi. I was in the trial but completed it a few months ago. It’s nice that it’s an option if needed.

I’m glad you are doing well and hope that continues for you...and all of us. Traveling is what keeps me motivated to stay healthy. I have a long list of places I want to see..:

Best wishes...!!

I know a few people on Imfinzi treatment and they are doing well. I have Stage IV NSCLC, so it's not approved for me. But I'm glad you are eligible. Take care and good you'll be NED soon.

Lisa

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