spicysashimi Posted January 19, 2007 Posted January 19, 2007 Hi All, I'd like to take a poll to test a couple theories that I have about survivng stage IV NSCLC. If you poke around the net, you'll find a lot of sites parroting an average 6-12 month survival rate for stage IV nsclc. I found somewhere that the average age of diagnosis is 68. I think that our age correlates to our length of survival and I suspect that most of us net savvy lchelper's lean towards the younger end of the spectrum, no offense to you old-timers (am I the youngest one on here? not sure if that's good or bad). I also generally suspect that those survival statistics are somewhat dated, perhaps not accounting for better chemo, more accurate radiation, and our new wunder drugs (avastin and tarceva). So, if you're interested, please post the number of months from the date you were diagnosed with Stage IV NSCLC. If you were re-staged to stage iv, please just calculate the months from your re-staging to now. I'll average us up. Allow me to go first. 5 months (August 15 to now) Quote
sharyn Posted January 19, 2007 Posted January 19, 2007 Don't know if you are doing this for only those who are still fighting the disease. My Dad was StageIV and 76 years old at diagnosis... he lived 3 1/2 years. Quote
tnmynatt Posted January 19, 2007 Posted January 19, 2007 Charlie was 51 at diagnosis and lived 27 months Quote
spicysashimi Posted January 20, 2007 Author Posted January 20, 2007 Caregivers of people who passed away are welcome to post, just identify that the person is no longer alive. And don't forget to post age at diagnosis. aaron Quote
hockeyma Posted January 20, 2007 Posted January 20, 2007 Gerald was 42 - diagnosed October 2nd 2006 - given 1 year. Now 3.5 monthes. Quote
ladybug Posted January 20, 2007 Posted January 20, 2007 63 year old dad- 1 year and still here!!! Quote
ginnyde Posted January 20, 2007 Posted January 20, 2007 Earl was 60 at diagnosis and lived 23 months. Quote
shineladysue Posted January 20, 2007 Posted January 20, 2007 husband recurrent & stage 4 age 59 lived 25 months after Quote
ahhappy Posted January 20, 2007 Posted January 20, 2007 Mom was 52 at diagnosis- stage iv- lived 6 years. Quote
ernrol Posted January 20, 2007 Posted January 20, 2007 Aaron, I have very little use for statistics. They are history. I am more interested in the future and creating my own statistics for myself. Sunday I plan to add a little. See site below. http://www.naplesnews.com/news/2007/jan ... me/?sports I think if you keep trying to figure out statistics you will loose your hair quicker than from chemo. Too many things are not taken into account, for them to mean anything at all. Your subjects would have to be the same, age, general health, treatment, diet, exercise, and attitude just to mention a few. There is one statistic that I believe is true. That is 100% of those that God wants to heal he can heal. If you have not read about H.R. Bloch, go to the web site below and read his letter. He was given 3 months to live and yes he did die, 24 years later from heart problems at 84. Click on a “Letter to newly diagnosed cancer patients” There is a good statement about the 6 things you need to beat cancer. http://www.blochcancer.org Just a suggestion, I have a circular file for the statistics. You did want to know some info so here is mine. Diagnosed at 68, stage 4 plus a pleural effusion. I have been cancer free since November 2005 and this Sunday I will be 65 days short of 70. Months 18 and going strong. Don’t worry about the statistics make your own and live a long and fruitful life. Stay positive, Ernie Quote
headbo Posted January 20, 2007 Posted January 20, 2007 My sister was 44 when diagnosed in March of 2002. She was restaged IV in December 2002. She died June 2004. Kelly Quote
dadstimeon Posted January 20, 2007 Posted January 20, 2007 May 2002--49 at time of diagnoses. Stage IV BAC, going on 56 months, not planning on going anywhere soon and it ain't the cancer that is going to kill me! Quote
StephanieJane Posted January 20, 2007 Posted January 20, 2007 My dad is a very active 53 years young. He was dx in early November with stage IV nsclc, so he is at almost 3 months and counting. I am believing that he will be around for many healthy and wonderful years. Quote
Don M Posted January 20, 2007 Posted January 20, 2007 I may be stage 4 since my 3rd cancer in 2 years showed up in my remaining lung, but it was never biopsied. I was 61 when I got my third cancer in August 2005. Don M Quote
marym Posted January 20, 2007 Posted January 20, 2007 I was diagnosed at 54, 21 months ago. Mary Quote
mamasbabygirl Posted January 20, 2007 Posted January 20, 2007 My mom was diagnosed at age 49 and survived 29 months. The last 6 months she had very poor quality of life though... Quote
Frank Lamb Posted January 20, 2007 Posted January 20, 2007 Diagnosed April 29th 2003.Now I'm at 3 years and 9 months.Athough struggling now we're still counting. I also don't put much faith in statistics. Quote
spicysashimi Posted January 20, 2007 Author Posted January 20, 2007 Ernie and for all the others who are wondering why I would do this: If you poke around the internet for nsclc, there's a lot of people, people without disease, talking about various aspects of our disease, including survival expectations. I am doing this to challenge those assertions and to tell our own story. I'm frankly irritated at how doctors, nurses, and other people (statiticians) tell me 1) how my cancer developed, 2) when it developed, 3) that it probably won't respond to chemotherapy, 4) that I'll feel like X, 5) that I'll be dead in X months, etc. I've already surpassed the 12 month mark for lung cancer (positive x-ray back in feb 2006), my cancer responded to chemotherapy, and people like dadstimeon on this board is trucking along at a whopping 56 months (awesome, btw!). I have a thing for people speaking on other peoples' behalf and I don't want to speak on our behalf. We are a marked group of people. Non-disease people will talk and write and about us telling a story that, in my opinion, isn't really borne out by the variety of experiences we all share on this board. So, now it's our turn. I want to tell our story. I think we actually agree Ernie. Part of my purpose is to challenge those statistics, to point out that our disease is more complicated than a body and and some haywire cells. I know an average is simplification, and maybe someday we can all tell our individual-specific stories. I, for one, and I suspect you might agree, intend to be another anomoly, to beat the odds, so to speak. I don't expect to live a normal life and I am pretty sure I will die from my disease (something I am still working on to accept), but I want to live and thrive and fight longer than my doctor's expectations. Sorry to stir the pot, but I had to get it off my chest. Aaron Quote
mary colleen Posted January 20, 2007 Posted January 20, 2007 Aaron, For some reason I can't define, I believe you will beat the odds. I thought so from your first post. Intuition, maybe. I understand the reasoning for your statistical venture here, and your weariness at non-patients telling you (all) how long you'll live, etc. As a lawyer, you can probably prognosticate intelligently over the outcome of a particular case, but I'm sure that you are also sometimes very surprised by the actual outcomes. You would probably tell us that you can never call it in advance without doubt. MD's can also prognosticate about probablity, but there are simply too many individual factors to call an individual case. Live your life, set your own course, and follow it. In a few years, you will be an inspiration to others needing hope. MC Quote
bware21 Posted January 20, 2007 Posted January 20, 2007 Aaron, I wasn't going to chime in here, but I guess I am so here goes ... When I was initially diagnosed one of the first thoughts that flashed through my mind was -- screw that, I'm only 54. Then I come on this Web site and I see people of all ages, you especially who happens to be exactly half my age. Add to that that you're a non-smoker and I've smoked for the better part of 41 years and I have hard time seeing the fairness of it all. I don't see the "fairness" because there simply isn't any. I admire your strength of character, which you clearly have in abundance. And if anyone can rise above all this it's probably you. Before this started with me I would have put money on it that age made all the difference. Now I'm not so sure. Maybe attitude plays a bigger role than age, though saying that is rather like saying: "If you die you had the wrong attitude," which is not the case. Maybe the whole thing is just a bad celestial joke, I don't know. My only concern with this thread is for the new people joining the site and being immediately confronted by statistics. I think we all know that at the onset of this journey most of us avoid statistics like the plague ... then as time goes by we get more at ease with everything. But when you're new -- Hmmm? Might be better if people responded to statistical polls via a PM? Just a thought. I wish you nothing but continued strength. Bill Quote
teresag Posted January 20, 2007 Posted January 20, 2007 I agree with Bill that one cannot be "blamed" for not halting their disease in its tracks - the significance of the "fighting spirit" that was once touted has since been shown false. Bottom line: Your attitude does not contribute to survival; it can influence your quality of life, however. Regarding survival statistics (from someone who minored in biostats in grad school) is that indeed they are based on historical data - of course. And yes, this means that newer targeted therapies have just barely begun to figure into the stats. Some people want to know their estimated lifespan. It does help with planning for the future, and for some people, any kind of information they get helps them feel more control over the situation. Many people ask their doctors for this information, and they have every right to do so. If you do not want to know, your physician, nurses, etc. should respect that decision. After all, knowing the "estimated" survival may only sadden you and your family. And these are only estimates, as many have noted, and prone to be off by a several orders of magnitude. One last segment to this lecture of mine (I am a teacher, after all) - and that is to say that medical prognostication uses a validated, but still limited set of data upon which to project survival. Although many factors have shown useful in predicting lifespan, including other illnesses & severity of symptoms, they have relatively small effects compared to disease stage. However, when a number of these "small effects" come together they may have a large influence on actual survival. And finally, of course there are still many mysteries around the reasons for varying lifespans among people with similar diseases. Truth is, the state of the science is such that no one is all that good at predicting lifespan. I just thought of one last thing: If you would like to communicate to physicians how to approach the "statistics" issue, please consider adding your thoughts to Ernie's "Letter to our Doctors" thread in the General forum. Lecture's over. Quote
Connie B Posted January 20, 2007 Posted January 20, 2007 Ditto tereasg and Bill. I have several wonderful friends who are long term survivors of stage IV. One is a 7 years, one is 3+ year, one is 2+ years, etc., etc.,. And I have known MANY that lived long and normal lives living with stage IV LC. I started up a lung cancer support group 8 years ago, so I have known many. Not to mention all our friends past and present right here on the board. They have come a long ways in treatments over the last 11 years, when I did my treatments. More and more people are living long and normal lives being a stage IV LC survivor. Quote
missyk Posted January 20, 2007 Posted January 20, 2007 I had to giggle at the "lecture" by teresag...SOOO reminded me of my days in nursing school! Those were good memories, by the way! Mom was diagnosed at 55 years old 20 months ago. When she had her first MRI that showed brain mets she was told that she'd be lucky to see a year statistically. When those mets that were treated grew substantially months later she was told a few days to a few weeks. That was months ago now. The dr's do their best to give (to those who want the information) an estimate of what the "average" person will face, and I know that in my heart. It DOES get disheartening to hear the numbers, yet it gives us an idea of just how far Mom's made it in her fight, also. I believe we'll start to see the new targeted treatments make a difference in statistics in the near future and it wouldn't surprise me to see it go from 6-12 months for stage IV to more like 12-24 months...and still won't cover everyone on both ends of the spectrum. As someone's said before...set your sights on your goal and keep moving toward it. You'll make it!! Quote
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