kyle jean Posted December 7, 2004 Share Posted December 7, 2004 Good morning. MY name is Kyle and I have stage 4 nsclc. 1 year ago I had a lobectomy of the right middle lung. Malignant, nothing in the lymph nodes. X rays every 6 months - and here I am with caner in the lung, lymph nodes and bone. And they call it moderately agressive ????? I've been looking for good new, survivors or options. They tell me 2 years at best - and I tell them -- that's just not going to work for me. Had primary diagnosis and 2nd opinion at major cancer center. I just seem to get the company line: lc is not responsvie to chemo, prepare for the worst. And that seems to be what I find on most sites So having just found you, I'm hoping someone out there can assure me that you can give this damn iddsease a run for it's money. So if you have any good news, I would love to heaar from you. Many thanks Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 7, 2004 Share Posted December 7, 2004 They tell me 2 years at best - and I tell them -- that's just not going to work for me. I love this! Great attitude! Welcome! No, I don't have any magic words for you, but you've come to the right place for support and help. Sorry you have to be here, but glad you found this forum. Di Quote Link to comment Share on other sites More sharing options...
Fay A. Posted December 7, 2004 Share Posted December 7, 2004 Hey, Kyle. I'm sorry you have reason to find us...having said that, WELCOME! I'm with you. I only ask for the prognosis so I can keep track of how wrong I'm going to prove those folks. Where are you located? And are you willing to travel outside your area to be evaluated for second opinion or possible treatment? See, one of the things I've learned over the past 5 1/2 years since I was diagnosed is that just because they don't offer specific treatments at one major (or minor) cancer center it doesn't mean that another facility doesn't offer anything, either. Not all cancer centers are created equal, even major ones. It all depends upon if that center has an active, FUNDED, Lung Cancer Program...and not all of them do. So let us know where you are and if you are willing to travel (there are means of assistance for those who need to travel outside there area for cancer treatments). Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 7, 2004 Share Posted December 7, 2004 Welcome, and keep fighting. When they give those median life expectancies, half of the people live longer and some much longer. We have plenty of examples here. So keep beating it long enough to go witch at them anew every few years. Curtis Quote Link to comment Share on other sites More sharing options...
BoBennett Posted December 7, 2004 Share Posted December 7, 2004 Hey Kyle, If your looking for positive statistics this is the place. Most folks here don’t fit the mainstream statistics, meaning the statistics in the mainstream are statistically wrong. I don’t know if lung cancer is responsive to chemo, but some seem to do well on it some seem to do well not having it. Everyone seems to have a different thought on what to do to beat the disease. Since your looking for options I would suggest trying to boost your bodies overall health. I don’t know if a healthy body will beat the disease, but a healthy body can put up a better fight. Also learn as much as you can, it gives you some control. This is a good place to get information. Two years didn’t work for this guy either. http://morris.lcsdg.com/SurvivorStories ... ate%20.htm Good luck in your fight. Bo Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted December 7, 2004 Share Posted December 7, 2004 So having just found you, I'm hoping someone out there can assure me that you can give this da_ _ iddsease a run for it's money. So if you have any good news, I would love to heaar from you. Stay with us. There are many people here that have beaten the odds. BTW, don't listen to the stats. No doctor knows how long we have on this earth. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted December 7, 2004 Share Posted December 7, 2004 Hy Kyle and WELCOME! and I tell them -- that's just not going to work for me. GREAT COMMENT! I LOVED THAT! We had a LC news link posted here recently by someone, and that particular website had a link to an lc forum. Out of curiousity, I followed the link and was SHOCKED, absolutely SHOCKED at the advice that was given. The owner of the site was giving the most dreadful responses to people I've ever heard. Said things like "That's just the way it is. Unfortunately, there's not much that can be done about it." My mouth dropped open I was so shocked at such discouraging words. SO GLAD YOU FOUND THIS SITE! These people are so hopeful and optimistic, that when someone is ready to quit fighting, we blast them with more ammunition and encouragement and they are usually ready to get out there and try something else. It's great here. JUST GREAT! Once again, a great big WELCOME to you, and God bless, Peggy Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 7, 2004 Share Posted December 7, 2004 Welcome Kyle,You have found a group of lung cancer survivors & fighters that just don't listen to the statistics at all. I too was diagnosed with nsclc stage 3a or b they weren't sure & didn't matter much cause I wouldn't be around very long anyway.Also said it was inoperable cause of location.This was in Butler Pa @ VA.Went to Pgh. Va 35 miles away & was operated on (left lung removed) it spread to other lung & I've had radiation & chemo.So far I have been stable since Jan 04 and doing pretty well all considered. Hang in there & maintain your excellant attitude & keep fighting best you can.YOU NEVER KNOW HOW LONG YOU CAN SURVIVE!!!! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 7, 2004 Share Posted December 7, 2004 Hi, Kyle, and welcome to this website. Lots of info and support here. You share a name with my grandson, who is 17. My wife has nsclc, Stage IV (bone mets) and has survived 26 months so far and still going strong. Hold onto the hope. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 7, 2004 Share Posted December 7, 2004 Hi, Kyle, welcome, and yes, there are many different approaches available and every person reacts individually, so yes - there is hope. This is a great place for info, too. Wonderful people, many successes. Sometimes it is more sad but even then, at least you aren't alone. Keep posting and best of luck. Margaret and Jim Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 7, 2004 Share Posted December 7, 2004 Hi Kyle... I am with the rest of this group of "fools" Under my breath when I was initially told that there was no hope for me I said, "oh go pis_ up a tree!" I knew in my heart that this is something that I was going to survive...97% of my bones told me so...!! listen to your bones...they are telling you something. You have to find the right doctors who will get you your chance. Mine said that it was survivable, but to tell you the truth, I believed more in myself than he believed in me. And I told him that too. It doesn't matter what "they" believe...it matters what YOU believe! And it is your fightin' spirit, your determination, your attitude, your tenacity that will get you where you need to go.. So pull up your pants tight and get ready for the ride of your life! You can do it...WE can help!! Love Cindi o'h Together WE heal!!! Quote Link to comment Share on other sites More sharing options...
karenl Posted December 8, 2004 Share Posted December 8, 2004 Hi Kyle My Mum was also stage IV at diagnosis with metastasis to the lymph and bone. That was in July 2003, and she is still here, pretty much asymptomatic, and has just had a scan showing 30-40% shrinkage in the primary tumour as a result of a clinical trial she is participating in. There is much to feel hopeful about - sounds like you already have the right attitude, which I believe is half the battle!! Best of luck to you. Karen Quote Link to comment Share on other sites More sharing options...
Justakid Posted December 8, 2004 Share Posted December 8, 2004 Hi Kyle- Welcome and don't listen to the doctors about "how long" you have. They don't know and there are lots of people here who can prove them wrong. Most recently "jimben" has had MAJOR shrinkage in his tumor (75%), those are some great advances! Keep a positive attitude! Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted December 8, 2004 Share Posted December 8, 2004 Welcome Kyle, Sorry you have to be here. I never heard such crap. Lung cancer is not responsive to cemo. What planet are they on? Tell that to all the people who have beat the beast!!!!! Positive attitude my friend beats everything. There's ALWAYS hope! Two year BAAA! Will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
ken f. Posted December 8, 2004 Share Posted December 8, 2004 as mr. twain said: there are lies, damn lies, and statistics. this is not to say it is imprudent to consider our situations. but really, our lives are ours to live. welcome here. ken Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 8, 2004 Share Posted December 8, 2004 Kyle, What a great attitude and attitude is half the battle. If lc is so darn chemo resistant, why do so many drs. give lc survivors chemo? Welcome to our group. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 8, 2004 Share Posted December 8, 2004 Welcome Kyle, First of all, you have joined a group that focuses on surviving. There are so many wonderful people here that are willing to share their stories with you and help in any way they can. You will notice that every case is different. There are no two cases alike and no two cases that respond in the same way, but I can assure you that lung cancer does indeed respond to chemotherapy. Aside from that fact, there are new treatments in the works as we speak. Hang on to that hope and find a doctor you have confidence in. God Bless, sue Quote Link to comment Share on other sites More sharing options...
Ry Posted December 8, 2004 Share Posted December 8, 2004 Welcome Kyle, Sorry I am a little late to the party. You will find lots of good news here. Glad you joined us. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted December 8, 2004 Share Posted December 8, 2004 Welcome to the family, Kyle. The journey is rough at times, but the traveling companions are great. If you are looking for good news stories, keep reading, there are a lot of minor and major victories here. Keep the faith. Becky Quote Link to comment Share on other sites More sharing options...
BoBennett Posted December 8, 2004 Share Posted December 8, 2004 ELLAKC2, I accept the apology you PM’d me for your personal rude remarks at my post. With all the humility I can muster. Thanks for reminding me that my planet is reality and how to spell chemo. Bo Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 8, 2004 Share Posted December 8, 2004 Kyle, A warm welcome, I'm sure you do not want to be sick, but you are in a good group of fighting people. Good luck. J.C. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 9, 2004 Share Posted December 9, 2004 Welcome Kyle. Rich Quote Link to comment Share on other sites More sharing options...
BoBennett Posted December 9, 2004 Share Posted December 9, 2004 kyle jean, My PM messages doesn’t appear to be being sent. Not sure why. I’m working on it. Bo Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 12, 2004 Share Posted December 12, 2004 The statistics are generally wrong... I have seen that over and over. I am glad that you have chosen to defy them. Keep fighting and stay here. We have a lot of fighting spirit that I believe will inspire you. Quote Link to comment Share on other sites More sharing options...
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