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spicysashimi

Stage IV Survival Poll

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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)

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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

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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

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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

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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

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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. :)

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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.

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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! :lol:

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!!

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