Hi all. It’s been 9 years since I learned my preliminary diagnosis of lung cancer. Later I would learn it was stage 4 lung adenocarcinoma. I’ve only had one line of treatment with no maintenance drug. When I was diagnosed I was told I might hope to survive 10-15 months.
There was no special diet or behavior that can explain why I’ve had such an amazing run. I’ve been enrolled in the Exceptional Responders Study at Harvard and I hope they learn something to help everyone.
I’m grateful for each day, every family member and friend and each experience.
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Denzie
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That's wonderful and pretty amazing news! Thank you for sharing your wonderful response.
You are a HUGE inspiration to so many and we are very thankful for all that you do to spread awareness and support those of us who are living with Lung Cancer.
I am also very lucky, depsite being diagnosed at Stage IV (Kras+) with a Brain Met and Pulmonary Embolism, I've done remarkably well with my treatments (I think it was Opdivo that really saved me). But, I also started off with Cyberknife for the brain met and that worked it own's special magic and I've been clear every since. Next for me came Chemo (Carbo and Alimta) and that had me NED my first summer, which was amazing. But, only a few months later I had a pretty significant progression and moved on to Radiation foloowed by Opdivo, which by then had just recently been FDA approved as a second line treatment. It worked very well for me, but I also had side effects which ultimately caused me to have to stop it back in August 2016, at which time I was Stable. I've remained that way ever since and on my last CT Scan (August) for the first time, I was told I'm now in Remission! WOOHOO!
I'll reach my 5th Cancerversary in March 2020, which feels like a miracle. Back in 2015 when I was diagnosed, the life expectancy was a year or two at most ! The chances at that time, of surviving 5 years, was a very, very low percentage. I honestly never thought it would happen for me, but I was determined to never give up either.
We are blessed with all the advances in Lung Cancer treatment and more and more are living longer lives. Nonetheless, I I still HOPE and PRAY every day that we will find our CURE!!
Best wishes to you Denzie for continued success. I hope we will all be celebrating many more wonderful years of life.
Lisa, it’s been amazing following your journey over the years. I was predisposed to liking someone who used the word purple anywhere when we first ‘met’. Your experience has also meant so much to so many when they learn their diagnosis. You’ve thrived through so much and I admire you.
Awww that is so sweet and kind Denzie -- Purple is my favorite color and also the Awareness Ribbon Color for Fibromyalgia, which I have also been "battling" for the last 20 years. I also used to have a "Crafting" Blog and it was known as "ThePurplePlace" so that's also why I used that name, it suits me!
Not sure if you will be planning to attend the upcoming Lung Surviviors Conference next April in DC, but I am now planning to go and it will be my very first time. I'm super excited and hope it will be a great time and wonderful opportunity to meet other Survivors. Hope maybe to see you there!!
Best wishes for many, many more years in Living with Stage IV Lung Cancer. It does feel wonderful to be in the "group" of long term survivors.
Lisa, I hope to be there. It’s an uplifting event and I’ve learned so much about lung cancer and treatment them over the years. I’ve also been privileged to meet many amazing advocates.
Thank you Denzie and Purple Place. What an Inspiration you both are. My husband is now one year post diagnosis from NSCLC with spread to pleura, chest nodes and liver. He is on maintenance chemo now. You have given us hope that his life expectancy could be far longer than we first thought.
I hope he will do well with his treatments, they really have come such a long way in the past few years and more and more people are "living" with Metastatic Lung Cancer. Best wishes to you both!
Congratulations - whatever you are doing, keep doing it!! Thank you for being a beacon of light for the rest of us, as well as a fountain of knowledge. I find myself telling folks to look to you for answers because you have done and continue to do such amazing research!! Can't wait for you to hit the 19 year mark!!!!
I’ve known a few people who’ve lived longer than the actuarial tables predicted. The one common factor I observed was a very positive attitude with a well developed sense of humor. I would suspect you might fit in that category. Whatever, your experience is an inspiration.
I suspect you’re right about that tumor humor thing. Humor is a wonderful refuge from pain. Robin Williams once said humor is shared pain. But it also takes one to recognize one. Sending hope that you enjoy many milestones yourself.
Gatorb8, you’ve learned quite a bit about yourself and your experience in a short time. Please continue to share what you can to help those newly diagnosed.
you first hear the word cancer. You are truly inspiring and have found your purpose driven life. I am looking for mine and do everything that I can to educate people like us in this journey. We have good days and bad, but we are all so blessed to be here with each other. Many thanks!
That is so exciting. I had lung cancer 6 years ago. A year ago I was diagnosed with stage 3 colon cancer. After surgery and chemo we thought all was well. Just a couple months my cea levels shot up and it was found in several lymph nodes. I was started on Keytruda and my levels are back to normal. I too have had a great response, I am so proud for your news and pray continued success for you and me!! God bless!
You memaw0100, your experience is inspiring for me and I’m grateful that putting you back on Keytruda was such a positive experience. That’s the kind of information that people come here looking to learn. Thank you for sharing your story and hope.
Congratulations! You are living proof that doctors don't know everything.
I agree with Rick, you are an inspiration to the rest of us. He is also right that humor is very important. After all, they do say that laughter is the best medicine.
Thank you! You’ve an important milestone coming up very soon as well. 7 years is a great run but I hope to read about your 10th and 15th anniversaries.
I don’t remember seeing the results of your last CT. Did I miss a post?
Thank you. My husband not so lucky as we. His cancer has spread into fluid surrounding lung and heart. Many issues now with heart. He will no longer be able to do any type of cancer treatment. He is preparing to go to Hospice. I need lots of strength, especially physically, since I suffer from extreme fatigue with my autoimmune disease and balance issues when I walk. Thank you for continued prayers.
There have been no scans since that last one and none scheduled. I see the oncologist next month and will see what he suggests then. I see him every three months. He seemed to be comfortable with stretching out the scans and since I have no new symptoms am ok with that. He will of course take action if I notice anything happening. It will be five years next June. When first diagnosed, I was given a 31% chance of a five year survival. Must be in that lucky group. Since I'll be 78 when I see him, I question how aggressively I would treat any new cancers. Need all the facts before making any decisions. Meanwhile enjoying all the good days and making the best of the not so good ones.
Again congratulations on 9 years. Keep up the good work.
Denzie, I drift in & out from these emails. Mostly out but glad today I was not feeling well so taking it slow & reading some mail. My last 4 cancerversaries have allowed me to prioritize things in my life that needed looking at. To be given that opportunity is truly awesome! I definitely believe you have been a remarkable help to others and wish you the best life has to offer. Blessings!
Thank you. I’m also a breast cancer survivor and get what you went through with both of your diagnoses. Sending hope that you are NED for both of yours.
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