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Well I guess I will post an update on my physical well-being.

I think I am at a crossroads. I have had some unexplained pains for some time. Most have come and gone, but two linger. They aren't really pain--more like discomfort. Plus, all of a sudden, I have less stamina. No weight loss or loss of appetite, which I thought would indicate spread, but maybe some people have spread without loss of weight, initially.

I thought I was getting pneumonia, and took a weeks worth of KFlex which seemed to stop it. Never a fever, just some strange lung sounds and chest pangs. . I also have a nagging short cough, that seems to start with any sort of exertion or movement, and I fear it is not temporary.

Do I ever question my initial descision? Some. But I know based on what I knew then and felt then, I did what I felt was best.

Everything in my life, as usual, is up for revision.

My other posts tell more about what is going on inside the other important parts of me--my mind, heart and soul. Those will live on, so I should worry about them more.

I wish there is someone who wants to really talk about the why to do treatment and the why nots. It seems most do it. I guess the bottom line is this: I am a truly committed person. When I commit to something, I go the whole way as best I can. I just haven't felt that the standard treatment is worth that kind of energy and willpower. I have so little faith in it. I feel like someone is trying to sell me a used car when it comes to chemo/rad.

But now that I don't feel all that good anyway, maybe I need to consider leaving the showroom models and heading out to the back lot in search of a deal..

The only thing I wish I might have done differenly, is made a mad dash to Greece or somewhere while I felt good. But I didn't know I felt all that good unitl I began to feel worse LOL. Or maybe I should have let Becky order me up a cabana boy. Nah, that's not me, either.

So it seems it's me and DeanCarl and Howard here on this less travelled path. Funny thing is, I haven't a clue as to the whys the other two are on this path.

What I am trying to say is I am beginning to feel ill. I am beginning to wonder if I should do treatment. I was initally told, I would be gone by now, without treatment. I was shocked. I remember believing that prognosis. I remember also not believing it.

I guess the latter was more right.

I never committed the whole way to the road Dean took, saying to myself if and when the disease gets worse than the "cure", I will reconsider. I have not found another Dr.

Someone else on this board is going to the one I thought I would switch to, but they aren't having any better time with it than I did with the other. It is all the same practice, the only one in town. That alone has filled me with such despair. Without a choice. I cant tell you how that feels.

I just want to be treated with compassion and with dignity. I want some faith, not in the outcome, but some faith on the road and in those who are on the professonal side of it with me.


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I think a lot of us have serious doubts about the advisability of conventional treatment. Anyone who does any research at all has to ask the question "is it worth it?". I was in panic at diagnosis and my medical team at that time left no time for reflection or research, so I headed into aggressive chemo and radiation. I have some concerns now that I may have done myself a disservice but I didn't really have a choice at that time.

I don't doubt that the disease will run it's course if I do nothing. But conventional treatment doesn't offer me much of an advantage either. One of my oncologists was honest enough to admit my theoretical odds of finding an effective 3rd line chemo were probably in the single digits.

I've been through the depths of side effects from chemo and radiation. I've vowed not to do so lightly again. The operative word here is lightly. I may do more at some point in the future but it will require some careful evaluation on my part first.

So now you can begin to see how I came to try the IV C therapy I'm now on. It's not recognized by the FDA but frankly that doesn't mean diddly to me. I've learned enough about the way the system works to understand that "the system" doesn't always work in my favor. Enough said about that....

The good news about what I'm doing now is it's non-toxic and actually makes you feel better immediately. It can't hurt me as the chemo and radiation have with dreadful permanent neuropathy and large areas of scar tissue with compromised function and worst of all, the seeds of future cancers sown throughout my body.

I would be more than happy to talk about the why to and why not to's of treatment. How shall we start? I'm going to guess a lot of others would be happy to participate as well.

I've rambled on for to long here already.

All the Best, Dave S

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Maybe we can set up a special chat room and time. I say we announce the time on the b oard and see if anyone shows up?

I want to hear from as many perspectives as possible. Knowledge through experience as patient and caregiver as well as knowledge from medical community.

Too bad we don't have a Dr on board.


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Part of the reason I am so down right now,is that though I am through with the chemotherapy and in "remission", I am having to deal with the after effects.

When I started this journey last year, I weighed 250# and aside from being borderline diabetic, (which I was keeping under control most of the time by watching what I ate) I was surprisingly healthy for my age and weight. Never got colds, flu etc. I smoked too much (2-2 1/2 packs a day) exercized to little and in general enjoyed my life! It wasn't perfect, but then who's is? I quit smoking a month before my DX, because my chest hurt in a weird way and I hoped that would help. It didn't and the rest is as they say history. I took the chemo, (the only thing offered to me) and it worked. Hurrah!

Now the bad news, I weigh 290, I can't walk 1/2 a mile without my legs and lower back cramping so bad I walk bent over, I take 3 hour naps and sleep 9 hours a night, I have an ulcer, I am a full blown diabetic and no amount of watching my diet controls it, I take more pills than my mother who is in renal failure and on dialysis 3 times a week. When I don't have diarrea I am constipated, I have thrush. I am only 51 years old and I feel like I am 90! And all of it is from the chemo. I am glad I took it and that I am fighting the cancer, but I think that the quality of my life has taken a big downhill turn thanks to the chemo.

I am not a brave person, and so I will take the chemo again if this beast comes back, even knowing as I do that it will really goof my system up even more. I have not got the guts to look it in the eye as you folks who have choosen this path have. I admire and salute you for it.



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The "whys and wherefores" of my decision are quite simple, and very complicated all at the same time.

To start out with: The options I was presented with in regards to treatment did not offer me much. A few months? A couple of years, maybe? And all with a decreased quality of life. Not for me.

But another big part of my decision has to do with my life as it has been and how it is now. I'm SO lucky. I'm am one of those rare individuals who has been given the gift of having accomplished (with a few very minor exceptions) almost everything I've ever wanted to do in this life. Since I got sober 24 years ago I've built two careers and not only have I been successful in both, I became known as one of the best in both. I have not only seen, but been a part of, the full range of the "human condition". I've had more money than you can shake a stick at and actually dined with a real prince (in Thailand) and, in the very same year, found myself digging in dumpsters for my eavening meal. I could go on and on, but there's only one other thing I've done that is in any sense important to me and that is this: I have loved and been loved in a manner that transendes anything I could ever have imagined.

A third part of my decision lies with my absolute belief that this life isn't "it". There is more. I know this to be true. My life on this earth is simply one part of a much larger journey. So, for me, dying isn't an ending, nor is it a beginning. It is simply a transitioning from one thing to another.

Please do not view the above as some sort of perverted "death wish". I'm not dead yet, and while there is life to be lived I will continue to do so the best I am able.

We often question the choices we make. I did a bit, at first. But the longer I walk this path the more I realize I made the right choice for me. And I, too, have reached a place where I don't feel well a lot more than I did at first. And yet, in some weird kind of way, that has only strengthened my faith that I made the right decision.

Oh yea .. another thing. At the end of last month I, too, blew by the "time frame" I was given. Must be doin' something right! :)


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Guest bean_si (Not Active)

You sound like you have full blown yeast infection and that can overhwelm the body. That's NOT what you want when you are trying to regain your immunity power. I know this disease is way overdiagnosed (often by charlatans selling snake oil) but it is an illness. I had it for the first time in my life after chemo.

You can the find cure in the referigerated section of a heatlh store. NOT yogurts - that's not enough to cure. I use BIO-K Acdiohillus/Casie 100% natural 50 million active bacteria (the good kind). You can take up to one container but I recommend starting at 1 teaspoon first day, two the second, three the fourth and if no trouble switch to 1 container. It's barely a half cup.

If you'd like Betty, PM me - as think we may have much in common.


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You really hit a nerve with me, and although I am not one to post but rather lurk and read what everyone else has to say, I decided to open up to you.

First of all, I should say that I am the caregiver. My partner decided to take the treatment, both chemo and radiation. Although he has only undergone two chemo treatments(taxol/carboplaten) and so far done fairly well with them, we are both anxious to see what happens when daily radiation is added to the brew. And I am wondering what he is buying by taking these treatments. Atleast half of the week he is so tired all he wants to do is sleep. This is scheduled to go on for another couple of months. And once he starts the radiation, God only knows how he will feel.

Of course, I can't say anything. It is not my cancer, nor my life. And my partner doesn't really want to talk about it, so I don't know what he is really thinking. I read the posts on this website, and it seems that one treatment just leads to another. I wonder what quality of life one has gained. I wonder if we shouldn't be living life fully while he still feels good, instead of sleeping and putting everything on hold for these treatments. I hope I am not sounding selfish, because I not thinking about myself. I just know that down the road there will be pain and suffering, and I hate to see him bring it on sooner than necessary.

This is all very difficult for me to watch. Perhaps I am just frustrated because there is nothing for me to do except to keep things running smoothly around him and I want to be more proactive. I want to go to one of these alternative health institutes and change our eating pattern or something that will not ravage his body more but make him feel better. I want him to spend time with his loved ones who have been neglected over the years. I want him to have some unadulterated joy without concern for mundane things like whether the grass in mowed. I want him to be at peace with God, so that this transition is natural.

I just pray in the meantime that he gets something for all of this treatment: that his voice will come back, that he has a long remission afterwards, that he is at peace when the end comes. GailA

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I want to respond to what Betty said.

I was just originally scheduled for palliative surgery. I guess the palliative blew right by me. Three days prior to surgery, the radiation oncologist and surgeon called me in -- there was an abstract of a symposium describing a phase II clinical trial that was stopped at 12 months for immediate implementation. I didn't think, I just went.

I ruptured my intestine from collapse caused by large doses of morphine the day I went to schedule chemo .(if it's cancer, it's real pain, so they paid attention. Worked better than 30 ibuprofen a day), had surgery for that, then had to wait 3 weeks for radiation/chemo. Saw that through, and had to wait and wait for surgery -- 7 weeks. Had time to think.

I would have been perfectly happy to be gone (note: not dealing with the going yet, just being gone), content with my life, BUT I had two small girls who needed Mom to stick around. I had a couple good friends who were going through hell with me one step at a time. My parents were living with me, having put their lives on hold at the age of 80 to help me through this. (Dad was a drill sargent with therapy). So I did my damnedest. I prayed, though, that if I were not going to beat this that God take me on the operating table. (Fourteen hour surgery, pulled out a thirteen pound tumor -- mostly necrotic. Chemo/rad worked. )I almost did not care anymore in the 3-5 day window post operative that the medical personnel worry about most. I had to choose between breathing and chewing; eating was a chore. Was in hosp 3 weeks, and a mess still on release. Had thrush several times, lost 30 pounds and about 2 inches in height, plus my left collarbone. Had radiation pneumonitis/reactive airways for the better part of two years.

Had two hospitalizations with pneumonia. Went from a smoker's 72% lung function to a post operative 45% lung function. Had a WRETCHED year and a half until I was able to find a desk job. Still don't breathe well either on an incline or carrying much of anything. Have to go slow. Take six kinds of meds, 3 for pain, one for breathing, 2 for depression/anxiety. Couldn't walk a dog around the block if I had one.

BUT I have seen sunsets, and blue skies, and smelled fresh mown lawns and felt GOOD, even though it took almost 2 years post surgery to get here. I watched my littlest learn to read, my oldest discover a womans body with a teenagers hormones. I can hold a full time job, pay my bills, and taxi my kids to activities, support them emotionally. Don't know why I was spared. Some days wish I wasn't, as my health isn't so hot. BUT this is the deal I made, and I have 4 years NED now. It took me two years to appreciate being here, because for two years I felt pretty ill.

Either way, it seems to me, it's coming to terms with what you do and why you do it, and having faith in it.

There's my fifty cents worth. Sorry to ramble.

Loving you all,




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Hi Elaine,

My walk on the path less traveled is governed by a number of factors. The one foremost is the lack of any really sophisticated medical resources here in Guam. If I had opted for Chemo in Nov. I would be stuck high and dry as the only onc closed up shop and went to Hawaii. Now to get Chemo or Radiation we would have to go to Manila or Hawaii.

Based upon the advanced nature of the cancer when it was first found in March of last year and how good I was feeling I decided not to compromise my current state and get the most out of the time that I have. The result of this is that I have been able to enjoy almost a year of really good quality life with admitted a few down turns.

Leaving Guam for treatment is not an option for me personally as I am unwilling to be apart from my family or bankrupt them with off island treatment.

The decisions we make are complex and far reaching. I question my decision each day and come away with the resolve that it is best path for me to take. I do not profess that it is the right path for anyone else as to walk. Each of us must make that decision for themselves. The irony is that we make such a personal decision that affects so many around us. As I said the decision is complex and far reaching.

Thanks for the update on how things are going with you and God Bless.


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Hi Elaine,I can't say what is right or wrong.I was told because of type & stage and mostly location I was inoperable and basically dead.Went to different dr. thoracic surgeon and he said he thought he could remove the lung.I asked how long to wait and he laughed & said he had a opening tomorrow @ 11 am.I said I'll be there & I went.I feel that if it's cancer and you are able to get it out then GET IT OUT.Thats just my pholosophy.After surgery it spread to the other lung & I said oh sh*t.That 's when I did the chemo & radiation.So far that has worked.All the sickness & discomfort were hard to bear but the effects have become much more bearable over time.Cemo & rad, did however cause some other problems.I can't say this soon if it was worthwile or not.Whatever you decide I pray for you and support you.

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Hi Elaine,

I guess I feel the same as you do about the Chemo and Radiation. I refused it too. I feel half decent now. I had lung surgery in January. I am eating alot and gaining weight. At least I have some energy. Why should I get so sick with Chemo that I can't even eat and it hurts my

good health! No thanks! They aren't going to kill me off faster with that stuff and my quality of life will be poor.My Gp threatens me that the Cancer might come back if I don't take Chemo. Look at all the poor folks that took it and it came back. But that is just my opinion. Everyone does what they feel is best. A friend of mine didn't want surgery so he took the Chemo and radiation. It was rough on him. They fried him with radiation to where a big sheet of skin came off and the flesh was oozing water. They told him he had to go to six weeks of chemo and radiation at the same time. After the six weeks were up they didn't say a word, they just kept treating him. He must have gone for 8 or 9 weeks until he quit. Are they that money hungry? and this guy was skin and bones and elderly. Somtimes I wonder! Take care! These are my thoughts. I hope I haven't offended anyone on the site>


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I dont want to say anything in comparison to what you have and will decide to do. All that I will say is that my Dad was "iffy" on further treatment. They told him he was inoperable, 3B, and they would not know how his body would react to treatment. He decided to do it, and is meeting the surgeon today. Not sure if things would have been any different if your decisions were different. I often wonder what would be different if my dad said nay on the treatment.

I think the bottom line is that...YOU KNOW INSIDE WHAT IS BEST FOR YOU. I think your decisions are best made by how well you live your life and how well you sleep at night. You know you more than anyone and as long as your comfortable with your decisions you know your doing the right thing...


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