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Stage IV, symptom free?


BoBennett

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I still consider myself new with this cancer business and am still learning to understand what is happening. I’m curious as to how others view it. So if y’all don’t mind I will ramble a bit with my question. At the period of my diagnosis the only information I could find on survival, in the mainstream area, was there was a very limited survival time with stage IV LC. That is still all I can find, yet just by looking at this posting board there seems to be many who are years into this and still seem to be doing well. I find it disturbing that the medical community has us all statistically dead and doesn’t speak about those who are past their statistical end, of whom there seems to be many.

I am interested to know if there are many advance stage folks who are feeling like they have no disease at all, i.e., symptom free. Personally I went from at the edge to feeling healthy and symptom free, even though, all things considered, the lung area is slightly advancing. Though I am thankful to feel good I'm certainly not understanding what is taking place. I’m not seeing any correlation to survival and habits at least on the positing boards. Most of the folks I know , and have known, with LC are in rough shape. I don’t get that feel on the posting boards.

Reviewing the posts, I saw one where the thought that extended chemo was not necessarily a beneficial thing. I have seen this before and it agrees with my understating of treatment. It makes me want to bag the chemo.

Anyway I’m beginning to feel somewhat complacent, not a good thing for me, kind of like waiting for the oncoming train to appear from that light at the end of the tunnel. I prefer to charge straightaway at the train.

Thanks for listening.

Bo

Nina, I know what you mean. Happy birthday.

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Yup! Pretty much symptom free for my Stage IV hubby, other than some occasional mild fatigue. At least for now. Like you, we don't know how long it will last, but we're not going to go looking for a freight train. We are just taking it one day at a time, plus planning our future.

As a matter of fact, my hubby can retire with full benefits next November and we're acting on that as if it's going to be a reality. To do otherwise, I think, would be nothing but incredibly depressing. We both realize that his disease could sneak up on him at any moment and bite him hard, but we also know that it might not! at least not for several years.

Bo, you do put out a very good question, though. We have to remember that all the statistics we read about include the longer term survivors, as well as the ones that only survive for a few weeks. And, unfortunately, they also include people with lung cancer who have died of other causes.

In all fairness, too, I have to say that, of course, the ones who haven't survived obviously aren't here posting. But, hey, the ones that are, are here, and there are a whole bunch of them out there surviving long term that haven't even found this site.

I hope you will choose to live with the day-to-day hope that you are going to be a long-term survivor. In the meantime, we're going to plan for a big retirement trip of some sort next year November. Only God knows if we will get to do it, but we are going to plan anyway!

Love,

Peggy

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Bo,

I am tentatively stepping in here....

In response to heading straightway into the train, MAYBE that light really IS the end of the tunnel and not the train...and if not, take a quick sidestep off the track and let it WHOOOOOOSHHHH on by! :wink:

Seriously, though...

The statistics that are quoted are from a five year study that I believe was completed in the late 1990's. Since then, there have been more advances in medicine, earlier detections, etc., BUT no one has updated the flippin' numbers!

I believe that lung cancer is a serious disease, I believe the statistics are less than sunny, but I don't think they're as dismal as the aged numbers seem. Would be nice to have an updated study, eh?

Most of the folks I know , and have known, with LC are in rough shape. I don’t get that feel on the posting boards.

I'm wondering if the people you are referring to are people that you SEE. One thing about message boards is that you don't SEE the poster. You don't really know if it takes them five hours to type out a message due to pain...you can't see their tears nor the grimace when something hurts. Kinda like "Ignore the Man Behind the Curtain" from The Wizard of Oz.

But, like you said, it appears many are outliving their "expire by" dates and that, in itself, is SO very cool!

Take care,

Becky

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Hi, Bo! Mky wife is Stage IV, but she has really not been "symptom free" in her 26 months of survival. The main tumor was on her upper spine and caused extensive damage, although she can walk, etc. fine. She has to take morphine every day for the pain due to the damaged spine. She also has lost a lot of function in her left hand due to the spinal damage. This is what signaled the presence of the cancer. I think it is great that you are symptom free -- enjoy! Don

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Bo :

As we have discussed before, my wife has stage 4 NSCLC with mets to the brain, spine, pelvis and left femor but has no identifiable brain or lung symptoms. She has some low back, hip and occasional left leg pain. And, her physicians consider much of this pain to be residual pain from her two ( 2 ) major low spine surgeries including some Gemzar-induced radiation recall in that area . We haven't gotten complacent about her being symptom free ( esp. brain and lungs ) because her CT scans aren't confirming this. And, it appears that her absence of symptoms, even at this advanced stage, isn't as uncommon as we thought. A very confusing situation for us to evaluate. Her med onc is pleased but he isn't drawing any conclusions based on this. He wants to see another set of CT scans. My suspicion is that he would like to see a better correlation between her condition and absence of symptoms and her imaging results.

B

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John was given a very bad prognosis by our GP. The day we met with him he gave us the statistics but one thing he said stuck with me. He said he had searched the net and had only been able to find one person that had lived over 5 years with the same diagnosis. Now is that not bizarre? I can remember sitting there thinking...but our daughter is only 3 we need more than 5 years.

So it sure would be nice to have some updated studies now that drugs like Iressa etc. are available. I am glad you are feeling well and hope it continues.

Rochelle

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Thanks all for the responses,

Yea Ry what has me perplexed is all these people outliving the stats and the only place you can find that fact is on groups like these, not from the medical establishment. ALL the folks I personally know, believe in the stats because they come from the mainstream, , ( most end up not believing in them but for some its overwhelming) I accepted them, to a point as well, funny how when the pain went away those thoughts did as well. The supplemental folks are all to eager to give good stats, so that is hard to rely on. I’ve been told don’t believe all that you read by nurses and doctors yet if you ask them too many questions they soon disappear.

I wasn’t trying to come off like I am feeling negative, I think things are far better than the important people say they are and it certainly would be good to have updated studies and stats as its always nice to have what you see corroborated by the establishment. The upside is I get pi**ed enough that it helps me in the fight.

Bo

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By the way, Bo. I should have added to my earlier post that my hubby hasn't always been symptom free. He did have severe headaches and that's how he was diagnosed, plus he's had some hard things along the way, mostly related to treatment, but he did have severe shoulder pain from mets that had to be radiated. I re-read my post and I thought it maybe sounded like he never had any symptoms at all. He did, but he is symptom free now and has been since June.

Also, I don't think new stats are going to be hugely different, but I do think they will be better. I just honestly think that there are a lot of people, particularly the elderly, that get lung cancer and really pass quickly because they are just in general poor health, mostly related to age. I think that's what really brings down the statistics. Just my perception - that's not based on any kind of fact. I really think there are a lot of people, though, that fall into that "already has medical problems" group (like my mom), so they just don't have the ability to fight it. That brings the numbers down.

Just my thoughts on the subject.

Peggy

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Hi Bo

Funny, Mum and I were discussing this very topic just yesterday. We were talking about the statistical 'curve' for this type of illness, and the fact that most people fall into the front section of the curve, but there tends to be a very long tail going the other way, indicating long term survival (albeit low in numbers). We were talking about how there doesn't seem to be anyone looking at these people and trying to work out WHY they are living longer than the statistical average. What is special about them? What are they doing that is different from the people who are not living so long?

Until someone takes a good look at these long term survivors, rather than just congratulating them on their good outcomes and considering them a 'statistical abberation', I fear that the statistical average is not going to improve much!

I know that my Mum has the following in her favour:

- taking a long list of supplements, thoroughly researched by my Dad

- the love and support of her family

- sound knowledge of her disease

- positive outlook

- has moved out of the bedroom she occupied for the last 20 years on the advice of a 'dowser' who claims that she was sleeping over an area of geopathic stress.

I believe that all of these things have contributed to her current state of well-being, but do you think that any of her doctors are interested in ANY of the non-traditional things that she is doing??

Very interesting topic!

Hope things continue to go well for you.

Karen

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there doesn't seem to be anyone looking at these people and trying to work out WHY they are living longer than the statistical average. What is special about them? What are they doing that is different from the people who are not living so long?

Until someone takes a good look at these long term survivors, rather than just congratulating them on their good outcomes and considering them a 'statistical abberation', I fear that the statistical average is not going to improve much!

Exactly

I believe that all of these things have contributed to her current state of well-being, but do you think that any of her doctors are interested in ANY of the non-traditional things that she is doing??

Exactly

Personaly I would rather they look at the reasons some survive longer than others than come up with a new chemo. but thats just me.

Bo

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I totally agree. I heard people at the beginning talk about a positive attitude. I had no idea how to get ir and feeling the way I did I thought it was over. My wife on the other hand thought, OK now our life is to get me better and I actually felt guilty that I didn’t have a good attitude. Her support is what led me to a positive attitude. I have come to feel that everyone needs to find a reason to go on, whatever that may be, positive attitude will inevitably follow. Then everything else follows, and that includes better days. It can’t help but happen that way.

45 years of friendship is the best reason I’ve heard for a positive attitude. I hope things go well for you.

Bo

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Hi Bo

Enjoy reading your thoughts. You have got some good ones.

About that positive attitude thing... boy, it has been something that has been elusive for me most all of my life...

But now, with many years of honing a skill of thought processes, it comes pretty natural to me. If I recognize that there is something that is disturbing to me, I stop and think what can I do to change how I think or feel about this situation?

And always. What makes a difference to me is if I can find something...anything to be grateful for.. even if I am feeling so low that the only thing that I can think of is how nice and big this cushie butt feels to sit on. It is all in a person's mind set and it takes a lot of practice. At least it does and did for me. It is work, but the work pays off. A positive attitude I don't think can be forced on oneself or anyone else for that matter. It is a constant choice in how I choose to perceive things. I don't know if I am explaining myself here all right. But, I just was hoping that you might be able to glean something here.

Attitude of gratitude.

Cindi o'h (doesn't mean things are always rosey posey though)

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Bo, I just read this thread and wanted to add something you might be interested in, if you haven't seen it already:

http://cancerguide.org/median_not_msg.html

This is an article I was given by the parent of a child with cancer, when she heard about my brother's diagnosis. She said, "I know you must be really worried about those horrid statistics, but you must read this." It really helped me and David and others I know. (Mind you, it took me 2 or 3 readings to really understand it, but it was worth it!)

Bottom line, the author (a famous author) is talking about his 20 year survival of a type of cancer for which most would say "that's not possible." But he did. And he talks about interpreting the statistics in a way that is more positive -- AND realistic.

Keep that positive attitude!

BeckyCW

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BeckyCW,

That is the most helpful article I read. I was actually lucky enough to run across it in the beginning and it, as with many things, was pivotal in my “recovery”. Three words, made and enormous difference, I had time to think, plan and fight.

Cindi o’h

I think this stuff is really interesting. The positive attitude thing is elusive for many and is hard to muster up if it is not natural. Although I never considered myself a negative thinker I did always look at the bad side, this help me prepare for the worst, inevitably that creates a less than positive outlook. A cancer diagnosis has a lot to be negative about and since “fate” “even guided “fate” determines the outcome, positive thought/attitude can guide that fate in a better direction.

I think every clinic and every hospital should have liaison to talk with patients about dealing with the emotional consequences of a cancer diagnosis.

I need to nap after all this thinking

Bo

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A positive attitude is sure a lot more fun than a negative one. My wife's and my attitudes changed to the positive side one day on our drive back home following a really down visit with the ONC. I looked over at her and said "Well at least they can't give us any more bad news"....we started laughing and have been having fun ever since.

jim

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Just remembered something that was mentioned at a seminar I attended given by Ian Gawler, a long-term cancer survivor. He talked about a study that was done some time ago, in the UK I think, on breast cancer patients. They found that, all other things being equal, patients who attended a weekly support group lived TWICE as long, on average, as patients who did not attend a support group.

Of course, most people are not familiar with this study, and I don't know of any similar studies that have been carried out. Can you imagine if they found a CHEMOTHERAPY agent that doubled the survival time of patients?? It would be all over the news, millions of dollars would be spent researching it, and everyone would be encouraged to try it. Yet, I wonder how many of you have been encouraged by your Oncologist to participate in a support group???

Interesting.......

And Jim, that is EXACTLY what my Dad said as he and my Mum and I stood there crying after getting Mum's final staging (over the phone :roll: ). We didn't exactly laugh, but I think we all gave a bit of a ruefull smile!!

Karen

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