Susan Cornett

If you want my honest opinion, I think statistics are crap. When I was first diagnosed, my oncologist gave me the grim statistics and I cried for 2 days. Then I talked to a physician assistant at the oncology clinic and she put it into perspective. Those stats are based on people diagnosed 5 years ago and all lung cancer patients are lumped in. Those statistics don't accurately reflect the new treatments on the market in the last 2-3 years, or those who were diagnosed and opted out of treatment, or YOUR age and overall health. I literally trashed the printout the oncologist gave me and I've never looked back. My oncologist and I have a running joke about statistics. I had a nodule on my thyroid; both he and the ENT said that less than 5% of nodules are cancerous and it is incredibly rare for cancer to metastasize to the thyroid. Fast forward to my thyroidectomy where they found two nodules and both were cancerous; one was thyroid cancer and the other was metastatic lung cancer. So stats? Nope. Stop googling the stats and enjoy today. Enjoy tomorrow. Make plans. In the words of Tom, if he can live, so can you.

Tom - yes I did! Looking forward to having to "borrow" toes to mark my success.

Good morning, Bridget. I've only had one flight since my lobectomy and I didn't incur any pain. It was a very short flight (about 1.5 hours). I have a long flight scheduled for May but will be prepared for any issues. I'm hoping to sleep through the long flight!

Good morning. I was diagnosed last year at age 46 with stage IV adenocarcinoma. I had surgery for both my primary tumor and my metastatic tumor and four rounds of chemo. For better or worse, I didn't have any tumor markers, so my cancer and treatment are just the plain vanilla variety. I just celebrated my first cancerversary. My suggestion to you: listen to the long term survivors on this forum. They know. They understand. They empathize. This forum has been my anchor for the last year. Your friends and family mean well, but they can't fully comprehend what you are feeling both mentally and physically. That's why we're here.

My fingers are crossed for NED results for your dad! Keep us posted!!

One year ago today, I was diagnosed with late stage lung cancer following a lobectomy of my upper left lung. The rest of 2016 brought chemo, a second surgery, a second cancer diagnosis, and enough anxiety to power a small city. But all that matters is I AM ALIVE TODAY. There are so many cancer patients who don't make it this far and I will not take this for granted. I have three trips planned this year and get to see my precious niece marry the love of her life in a couple of months. Now I just have to get through tomorrow's scan results.

Michele, I'm so glad that your cancer was caught early and that you were able to have the VATS surgery. My first cancerversary is this week. I've had (knock on wood) good scans but the fear, worry, and anxiety are always with me. Both the week leading up to my scan and the time between scan and results is terrible; I'm deep in scanziety. I go through the "what if" scenarios in my mind. I've learned to find tasks that keep me busy. But, yes, each new pain or twitch makes me wonder. You'll have to find what keeps you centered and focus on that when you find your mind wandering.

Hi CarlaAnn. I was on the same chemo/steroid regimen that you are on. My doc told me that insomnia might be a factor because of the steroids. I don't recall having issues with insomnia, but I was also taking an anti-nausea med that knocked me out at night. What some doctors fail to realize is that we all react differently to the chemo and ancillary drugs. Hope your next chemo cycle goes more smoothly.

Hi, Alyssa. Are you looking for information as a patient, caregiver, friend? You will find great people and lots of information in this community. It has been a lifesaver for me.

Good morning, Nicole. I can't speak to the concern about coughing; my tumor was removed prior to chemo. But I do know that things tasted different when I was on chemo. One of the tips I was given was to use plastic utensils. Another tip was to keep hard candy like Life Savers or lemon drops handy; sucking on hard candy seemed to help. Another tip was to gargle with baking soda, salt, and warm water daily (maybe after each meal?) to prevent mouth sores. It also helped with the bad taste. Keep us posted on his progress.

I'm looking forward to painting my first red toe in a couple of weeks!

Good morning, Sue. My mom was in your shoes last year; I was 46 when I was diagnosed with late stage adenocarcinoma and it shook us all to our knees. I had an MRI and CT after surgery and before treatment began. My cancer had metasticized to my thyroid, so I got a bonus thyroidectomy last year. My oncologist tells me that it is very common for lung cancer to go to the brain, but has also told me that doctors are having great success with radiation for the brain mets. Please keep us posted on your daughter and you. I swear the diagnosis is harder on the family than the patient. But if you want to yell, cry, throw things, pray - do all of those things. Just know we're all here to support you and your daughter. If you need inspiration, you don't have to go any further than this site. There are quite a few long term (10+ years) survivors on this board who have sage advice and inspiration.

Mally, Good morning. I did not lose my hair during chemo. The PA at the oncology clinic said I had a 50/50 shot of losing it, but the oncologist said that I likely wouldn't lose it. I have a friend who took cisplatin for a different type of cancer and he lost his hair. The PA told me to be gentle with my hair - don't wash it every day, try to minimize use of hair dryers and curling irons, etc. I hope this helps.

Mally, For me, one round = 1 day of treatment, and all of my chemo was outpatient. Chemo days were long, though. I started with lab work then to the infusion room so that the nurses could start IV fluids. Once the oncologist saw me and reviewed the lab work, he'd sign off on chemo and they would start the chemo drugs. Because I had fluids, two different drugs, steroids, and fluids each time, I was usually at the clinic for 7-8 hours. I had three weeks between each treatment. For better or worse, I could predict when the side effects would kick in. I had chemo on Fridays and felt pretty good until Sunday, when the steroids wore off. Fatigue and nausea kicked in on Sunday and were the worst on Tuesday. By Wednesday, I started feeling good again. The worst one for me was the last chemo - it took a few extra days to feel normal again. I hope this helps.

Leia, Thank you for sharing the progress on your brother's treatment. I'm thrilled he'll get an opportunity to check out trials at MD Anderson. I'm from Friendswood so I'm fully aware of the opportunities available both at MD Anderson and in the Med Center. As for the cancer, I didn't have any mutations either. I went through four rounds of chemo with cisplatin and alimta. My side effects were manageable. I had fatigue, nausea, some neuropathy and tinnitus. The tinnitus is the only thing that still lingers and I finished treatment in May. My oncologist provided two different anti-nausea meds that I could piggyback in the days following chemo. I will keep you all in my prayers. I believe in the power of prayer and a positive attitude.

Tom, We are also going to Kaua'i and I can't wait!

Mally, As I mentioned in my other post, I had lymph node involvement. Seven of 10 had cancer, but they were able to get clear margins. I followed with chemo and I've had three clear scans since then. Don't give up! You can beat this monster.

Mally, I had a lobectomy of my upper left lung in February 2016 for a mass that was diagnosed as adenocarcinoma (no mutations). Surgeons removed 10 lymph nodes and 7 had cancer cells. I went through four rounds of chemo (cisplatin/alimta). If you don't want to wait, or you don't like the treatment options provided by your team, get a second opinion. Hope this helps.

We've all experienced that sucker punch to the gut when we, or a loved one, are diagnosed. But several physicians have told me and others on this forum that a positive attitude is so important in this fight. There are so many wonderful survivors on this forum that gave me, and continue to give me, hope. I read this today and think it applies to all of us on this forum: Don't die before you are dead. So, I move on with life and have decided not to die before I'm dead. Cancer be damned - I'm going to Hawaii in 4 months.

Leia, I know this is a lot to digest - any cancer diagnosis is - but to have a doctor say days are numbered must be too much. I'm not doubting your brother's medical team, but has he pursued a second opinion? Is he eligible for any clinical trials? There are so many stage IV patients running around living their lives like the cancer diagnosis isn't there. Because your brother is young and otherwise healthy, he is a step ahead. Please know we're all here for you and will do our best to answer questions and share experiences.

Hi, Bobbie. I also have NSCLC but didn't have any of the genetic mutations. It sounds like you've had quite the experience with managing your meds. How is your arthritis since you stopped your NSAID? Although my dad doesn't have lung cancer, he has a number of other conditions that require medications; due to ongoing liver disease, balancing his meds is tough. Hope you continue to have success with your treatment and that your side effects diminish.

Good morning, Jess. I'm glad you found this site - it has been very helpful to me. My lung cancer was diagnosed during surgery; my cancer had spread to my lymph nodes so it was staged as III. The doctor revised the staging because after surgery, but before chemo started, metastatic lung cancer was found in my thyroid. Perhaps your mother's medical team is waiting for more information, such as any metastisis, before they stage. That said, please don't let the stage number take over. I pretty much ignore my stage IV diagnosis and am making plans for two trips in 2017. I also took the cisplatin, with alimta, earlier this year. My biggest issues were fatigue and nausea, although I did develop neuropathy. Please keep us posted on her progress, and let us know how you're doing.

Hi Stephanie. I was diagnosed with Stage IV in February of this year with mets to the thyroid. I had an upper left lobectomy on February 22nd and started Cisplatin/Alimta in March. I had four courses of chemo and I tolerated the side effects fairly well. My issues were nausea, neuropathy, fatigue and tinnitus. I had chemo on Fridays, with a side of steroids, so I usually felt good until Sunday afternoons. My oncologist did a fantastic job of managing my nausea by giving me 2 different meds to alternate. I did not lose my hair with this treatment. I have not had any experience with Keytruda but I know that others on this forum have and will likely share their experience. Always ask questions of your father's providers. Ask until you get answers. Keep us posted and let us know how he, and you, are doing. Happy 2017.

I know that others on this forum will reach out to you, but let me offer a bit of advice. First, don't give up hope. People are LIVING with lung cancer much longer than in years past. When I was first diagnosed earlier this year, I looked at the statistics and mentally gave up. But then I spoke with a member of the medical team at the oncology clinic who explained those stats to me like this: they are numbers. They are a compilation of patients over the last 5 years. They don't take into account age and overall health at diagnosis, whether a patient started treatment, finished treatment, etc. Those stats also don't accurately reflect the advances in lung cancer treatments in the last 2-3 years. Second, a positive attitude is everything. I know it seems dark right now, but your boyfriend has his age and otherwise good health on his side. We all have an expiration date; lung cancer just tries to speed it up. As a patient, I had two options: curl up and wait for the disease to take me or get out and get on with my life. I chose the latter and am making long term plans and enjoying each and every day. Please know that we all understand this diagnosis and what it means to the patients and family. But also know that we're all here for both of you.

Good morning, Wendy. We all understand the fear and uncertainty. Please know that we are all here for you. So many of us have walked that path and are willing to share our experience, knowledge and advice. Keep us posted. Blessings to you.