Since I am in the business of living, I thought I would give my quarterly report. I do get a scan every three months since I was diagnosed with NSCLC in 2013. On Tuesday, my scan showed no evidence of cancer which means I have been in remission for two years now. The only problem showing up on scans is a large hiatal hernia which has all of my stomach and part of intestine inside it. The surgeon does not want to do surgery right now due to some serious risks. As a result of chemo, I have developed a fib. My autoimmune symptoms have returned with a vengeance. So, despite new issues or return of old ones, overall the future still looks promising as I continue in the business of living.
Judy
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Ncpoet
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I'm happy about the cancer being in remission. Your hiatal hernia is another. I have one but it isn't big and mine is bad enough. I sincerely hope. They can fix it. They won't do surgery on me. I'm a high risk. Though I'm still cancer free in October it will be 6 years. Are you afraid about the hernia. Ew. OMG. That's awful I hop they figure how. To fix it. I know about the hernia.it can be a pain. Don't let Dr keep on telling you he can't fix it please get a second opinion. I'll be here and please see another Dr. Let me know what's happening. I will be here. Love susie jo1948
Thanks for your concern. As for hiatal hernia, my mom had the surgery twice. Her esophagus too short for it to be fixed completely first time. Second time it was emergency surgery. I am aware of what can happen and what to look out for which could mean immediate surgery. So I have learned to eat smaller meals more frequently. The risk for me could be life threatening. So I will just to continue to survive this as I did the cancer—one day at a time. Hope you are doing OK for now. As always, thanks for encouraging words.
Your sense of humor has helped carry you this far. I loved the ‘business of living’. And living with no evidence of disease is wonderful. You have a great handle on the hiatal hernia. My step dad had one and he ate just the way you do. Hold fast the promises of tomorrow.
Thanks for your reply. I have laughed my way through life and it works for me. When my oncologist gave me an estimate of months to live, I told him that wouldn’t do. I needed a bare minimum of 10 years since I was waiting to hold a great grandbaby. My son says I will be living a long, long time since neither grandchild is dating. One is 21 and one is 19 and they are both career-oriented. So I am looking to be in my 90s at this point. I told my oncologist this round of tests that I am like the old Timex watch commercial, I “take a lickin’ but keep on tickin’.
Love you attitude! My oncologist calls me the "Energizer Bunny" because I'm on my 5th primary cancer and keep on going! Cancer may come and try to knock us down, but so many of us keep on getting back up. Even through chemo and rads, we keep on going because the alternative is too ugly to give in to. I am going on a long trip starting Wednesday - taking the concentrator and 18 tanks with me so that I can go for a longer time...onc just shakes his head and laughs with me - cancer does not define my life, fighting back does! I wish you the best!!
You are so right that surviving is the name of the game. Some of us, no matter what we do, won't survive - but that doesn't mean we have to give up our positive attitude and doing what we can do!
I am glad you are still in remission. I just recently lost my upper right lung lobe to LC, lost the left upper 5 years ago. I told my oncologist that if it comes back, it's mine and I'm keeping it.
You seem to have a good positive attitude and a sense of humor, both are important. A positive attitude can help to keep us fighting back when we get knocked down. As for a sense of humor, like they say "laughter is the best medicine". I know I always feel good after watching something funny on TV. If we didn't keep our sense of humor, we would probably wind up in the state of depression, it's okay to visit that state occasionally, but that is one state I refuse to live in.
I also have a hiatal hernia, but mine has not yet been an issue. I do the same as you, several small meals throughout the day. I wish for you a long and happy life.
You are so right. Maintaining a positive attitude and sense of humor helps us get through so much. Are we ever sad? Of course, but that doesn’t mean we stay there. That is just being human. I learned a long time ago how humor and attitude helps. My husband taught me this as he went through his cancer 25 years ago. He was told he had 5 years at the most and he is still surviving. We surrounded ourselves with funny movies, stories, and when given a negative percentage we looked only at the positive. Yet, we watched 3 of our loved ones succomb to lung cancer. We must fight with every breath until someone discovers the cure.
Your posts are wonderful and I love your attitude! I saved one of your posts from six months ago and made a printed copy that is on my dresser to see every day and give me the hope to continue with the business of living.
Thanks! That is what I like with this group of survivors, there is definitely someone who will know what you are going through. The doctors quote the statistics which can discourage us, so we must do what we can to encourage one another. They are just observers of cancer. We are living it with faith and hope and I believe that can overcome the negatives in the long run. Even if my days are shorter than I want, I plan to go down with a smile for the days I have “outwitted, outplayed, and outlasted,” it for I am a Survivor!
Right now, I have what you described: stage 4 NSCLC on the outside of my right lung, and because it is in the middle of my chest and too close to my heart, it’s inoperable. I’ve had several biopsies, and then mediastinoscopy, but they couldn’t get enough tissue to tell them how to treat it.
Prior to this, I had a tumor in my upper right lobe, and the lobe was removed. So, they are waiting for labs from that lobe. It seems like I spend all my time in biopsies and scans. I had two rounds of chemo that made me so sick I was in the hospital for a week in May. I changed oncologists because the one who treated me in the hospital seemed more interested in finding the right treatments for me than the one who had been treating me in Naples, FL. I’m on Ft. Myers Beach and this oncologist is closer for me. I’ve been building myself back up from losing 35 lbs. and being very weak to a stronger state to receive treatment. I get another CT scan next week.
Then, see my oncologist on October 1st. Your posts have given me hope and encouragement thank you.
I hope the new oncologist helps you find right way to treat. I had Alimta and carboplatin for two treatments and then switched to targeted therapies for a year and then back on Alimta. Have you had genetic testing to find out what treatment has the most promise? There are several new immunotherapies that weren’t on the market when I was treated. The waiting time is difficult but knowing the right drugs for each individual is important. Having an oncologist you trust and have confidence in is a key. You work as a team with your best interests uppermost. You are not a case. You are a person who matters to the world. I am glad you are working on getting stronger. You are preparing to go into battle where you become the victor.
Thank you so much, Judy! The problem as I said, they haven’t been able to get enough tissue for lab work and I assume genetic testing. So hopefully they will be able to do that on the original tumor that is in Naples.
I’m ready for a fight! I’m Irish, so don’t mess with me big C!
Well, then, you have the toughness genes too! I’m a Murphy. In Ireland, our name is as common as potatoes. And, we’re said to be tough as nails. And, I think laughter is very healing along with the medicine.
Congrats on the news. I just had my 5 year scan. Since they found my colon cancer, they were afraid it had spread from my lung, but another primary cancer. They also found a hernia doing my testing, but focused on removing the cancer and chemo. I pray God continues to bless you!!
I’m blown away by the number of us Lc survivors with hernias! Is that a common occurrence? Well duh, obviously it is or else we wouldn’t all be talking about it. Does anyone else here have Barrett’s Esophagus and GERD along with the hernias? I have to have an endoscopy every 3 months just to stretch my esophagus enough to be able to swallow without choking. How come no one tells us these things are going to happen years after treatment is over? I bet it’s because a lot of people might skip radiation if they knew the long term side effects. I wouldn’t have. It saved my life....but I would have prepared myself better for all the lovely gifts I receive daily from treatment 🙄.
I’m very happy you’ve gotten to hear those words we all want to hear..no evidence of disease. My next scan is this Tuesday so maybe Wednesday I’ll hear the same thing. I’ve been waiting 3 1/2 years to hear it. Fingers crossed! Be well!
Your comment touches on one of my current concerns: many of us are living longer than ever expected, and there is little to no hard data on what that looks like. What does 51 treatments of pemetrexed (alimta) do to a body that we haven’t seen yet? Hernia? GERD? Heart failure? Joint damage? (I just had a hip replacement at age 46 caused by Avascular Necrosis that was caused by the heavy steroids necessary after NSCLC brain Mets removed by craniotomy). Anecdotal evidence that can be found through others on this forum are the only window we seem to have. Alas, sometimes ignorance can be bliss too, though. I’ll keeep on with my every-three week Alimta as long as it keeps the cancer stable for me to parent my 17, 14, and 12 year old.
I agree about questioning long terms effects. I developed afib during treatment and take medicine to regulate it and a blood thinner to prevent strokes which can be caused by afib. But at least Alimta does help us live longer. We just may be choosing quantity over quality, but right now that is fine with me. You have children and I have grandchildren and when they are around, life is good!
Praying you hear this as well. It was three years for me. I also have GERD. That feeling right before scans doesn’t go away but at least it only lasts a few days. Let me know how you are doing.
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