dave s

Elaine, 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

Dear Curtis. I applaud your candor. I really thought I was the only person in the world who felt the way you describe so eloquently. I never comment on the ACS because it is such a "sacred cow" in the world of cancer. Thank You Again, Dave S

Dear Elaine, First of all I have to admit that I saw this post within minutes after you made it as I was up and in pain. I took a pain pill and was waiting for it to kick in. So I logged in to look around the board as I often do when I'm up alone in the middle of the night. I read it and wanted to respond but could not. I really tried but just couldn't. I think it hit a little to close to home for me. The role of patient in this LC game is a complicated one. We must fight the beast with everything we've got and simultanteously do everything we can to protect our loved ones from the dispair we internally feel so intensely. At the same time we have to make preparations for the possibility that the Drs are right and we will not prevail in the fight no matter how hard we try. Those preparations take many forms. Beyond the "final arrangements" issues are the softer but no less important things like trying to prepare those who we will leave behind to have as little discomfort as possible. I don't want those I leave behind to be sad or grieve for one more minute than is absolutely necessary. Then there are the practical problems. There are certain things I do that someone else will have to do after I am gone. How do I try to prepare them for those tasks without making it look like I have given up. I'm talking about practical things like paying bills and managing money, etc. It's easy to say I'll wait until later to do some of these things, but how can I be sure I don't wait to long and find myself unable to do them at all. That would be very unfair to those I leave behind, wouldn't it? Plus it would make me feel just awful. I see I've begun to ramble so I'll stop. Thank you for your post Elaine. Dave S

Well I wasn't going to respond to this thread but I have one thought I want to contribute. When I received my initial diagnosis it was from the absolutely least compassionate Dr I have yet seen. As he delivered the Dx he stated authoritatively that I would have 4 good months, 2 bad months and be gone. He said that there was nothing I could do which would affect the outcome either way. So I decided I didn't need the additional aggravation of quitting smoking on top of everything else. I post this to help caregivers understand why in some cases, patients DON'T necessarily quit immediately upon Dx. Diagnosis is a terribly emotional time. This Dr left me the impression that I had already paid the price so I might as well take the path of least resistance. I got away from this Dr as fast as possible and haven't seen him since, for what it's worth... Just my pathetic tale. Best Wishes, Dave S

Makwa, One thing I leaned early on was to start a 3 ring binder and keep copies of EVERYTHING. I'm now up to 2 binders and they are categorized by tabs like test results, progress notes, etc. I think everyone should do this. Afterall it's our data... Best Wishes, Dave S

Thanks for the info Peggy. Don't you just love having some idea why things are the way they area? I hope things are going OK for you guys today. Best Wishes, Dave S

Thank you Fay for your insightful post. I'm one of those with rather intense shoulder pain right now. I'm home right now after having gone to get my pre-bone scan injection. I go back in 3 hours for the scan itself. My Onc. thiinks I may have spinal mets causing the pain. I'd prefer a fractured rib if I had a choice. I had a fractured rib (from bone mets) once before and it felt a lot like this does now. I know that doesn't count for much. I got a PM from another caring person here urging me to get a PET but I'm concerned about being able to lie flat for that amount of time. Plus my ins. is pretty picky about the frequency of PET scans so I'm trying to save that for later if needed. It sure is nice to be able to come here and exchange thoughts and ideas like this. What would I do without this board???? Best Wishes, Dave S

chloesmom Very well put. I couldn't agree more.

Mo, Since I read your post about having a lack of stamina and energy I have been trying to remember what I did when I had that problem. Well I checked in my records and I started taking glutamine to help with the stamina, energy, muscle wasting and neuropathy. I don't know if its widely used or not but it was suggested to me by a chemo nurse so I tried it. It's not a Rx drug or anything. It's just a fairly common substance sold in some health food stores and particularly body-building stores. Boy did I feel funny walking into one of those places.... Anyway it's supposed to assist the absorption of food in the intestine and do a bunch of other things too. I did improve but I can't say if the glutamine was responsible or just the passage of time. I took 10 grams at a time, 3 times per day. I paid about $40 for each 600 gram jug. I checked to see why I stopped taking it and I wrote that I had found an article that suggested that since tumors are big consumers of glutamine perhaps it might accelerate the growth of tumors, so I stopped as I didn't really need it anymore anyway. I'm sorry to give you a mixed recommendation like this but I think if you are interested and do some searches on the web you will probably form your own opinion. Or maybe someone else here has info they will share with you. I hope you feel better very soon because I remember well how awful that feels, yucky! Best Wishes Always, Dave S

Dear Fay, Thanks for posting this. For me your timing couldn't have been better. I'm 2 years into my stage 4 diagnosis and was getting a little discouraged because I just can't seem to eradicate the miserable beast. I needed a little encourgaement. I just want to thank you for sharing. Cangratulations, Dave S

Hi Chloesmom, One of the bad things about both chemo and radiation is that their mechanism of action plants the seeds of future cancers. The way they work is to try to damage the DNA so severely that the cancer cells can't reproduce. That's why they don't actually kill the existing cancer cells, instead they try to keep them from generating more cancer cells in the future. That's fine for the cancer cells themselves, but they also inflict this same DNA damage on the poor innocent normal cells who happen to "catch" their ill effects too. Not surprisingly this sows the seeds of future cancers. Cancer patients are the only place I know where this degree of risk is openly taken by the medical community. I think the degree of damage inflicted by both radiation and chemo towers over the "normal" environmental risk factors we all cringe thinking about. I guess the reason this is not talked about more is due to the underlying assumption is that the patient is short term terminal without the treatment so the potential good outweighs the bad. All of this is the reason why I have decided not to take any more chemo or radiation unless I absolutely have to (which I may). In fact if I knew then what I know now I would have taken less treatment in the earlier stages of my disease. The patient information for both chemo and radiation tends to focus on short term side-effects rather than long term risk factors. That's probably doing a disservice to patients. Just my opinion. Best Wishes, Dave S

Thanks for all the replies. It sure is nice to have folks to talk to about these things, It makes me realize that without this board I'd be totally on my own (not a good thing!). The folks here and especially Katie and Rick, will never know how much I appreciate everything, Thank you. Ginny, your suggestion is one of those where I read it and say "geez, why didn't I think of that". I got through yesterday without the Oxycontin and I think I'll keep trying to avoid it for a while. I have a bone scan tomorrow and then see my onc. Thursday. I'll ask him about it then. Thanks again all, Dave S

Hi Again, Well at 2:30 AM this morning I woke with severe pain so I dutifully got up and took my oxycontin 20mg and waited for it to kick in. Once again 35 minutes later I was vomiting. Has anyone else had this problem with oxycontin? I hate to give up on it since it does control the pain well (when I can keep it down). The info sheet says vomiting is a possible side effect which MAY go away during treatment? Of course it also says to contact my Dr if it's "bothersome". Bothersome? Duh! So if anyone else has had this experience with oxycontin could you please let me know how you handled it? Best Wishes, Dave S

Jen, In my opinion your prognosis is as bad or good as your ATTITUDE towards the cancer. If you look around this board you will find many of us at advanced stages well beyond our projected life expectancies and doing quite well. I was diagnosed at stage 4 with distant site mets and projected to survive no more than 6 months, but that was 2 years ago. I still have every intention of eradicating my disease entirely. I may not be cancer free today but I am working on it tirelessly. I have ben troubled by a persistent stridor and wheeze also. It's caused (in my case) by tumor tissue compressing the airways leading to my right lung. For a time I had almost no air exchange to all 3 lobes of my right lung. It's much better now. Best Wishes, Dave

Hi Folks, I've started taking oxycontin as of 2 days ago for this increasing shoulder/back pain. It got to the point where I was having to take to much percoset to try to control it. Last night I vomited unexpectedly 40 minutes after taking the oxy. I hope that was a one time thing and not something that happens frequently. My question is this. I notice I seem to be much less tolerant than usual lately. I'm downright testy today for example. I'm sitting here taking one of my IVs today and I'm browsing through this board while doing so. I just looked at some of my response posts and I can feel my own hostility. That's not like me. Has anyone else noticed this kind of effect from oxycontin? It is working well for the pain control. It's possible it's unrelated and I'm just cranky for no particular reason. Best Wishes, Dave S

JoniRobertWilson, I'm stage IV with maximum 6 month survival prognosis at the time of diagnosis. That was 2 years ago. I'm shocked that you are on this website and even had to ask that question (the one about whether anyone had outlived their Dr's prognosis). Perhaps you might benefit from reading more of the posts here from those of us who are not ready to give up. I'm sorry to sound so short I guess I'm in a really bad mood today. Best Wishes, Dave S

S. Jane. I'm sorry to have say this but I think you are wrong. I'm the person with the cancer and I know what it's like to try to maintain as much independence as possible. Please consider your parents need for dignity and their desperate struggle to remain independent. In my case I become indignant when anyone forces me to admit that I can't do many things for myself any more. Every inch of normalcy that I'm forced to give up is a victory for the cancer and a loss for me. If my kids force me to give up my home for their convenience, it's an admission that the cancer has won and I have no chance to ever return to my life as it was before cancer. While that may turn out to be true, don't ask me to do so lightly or cheerfully. It's to important to me. It's like I've been forced to give up all hope. I hope I haven't offended you but this is something I feel strongly about. Please consider your parents feelings and needs as well as your own. These are trying times for all of us. You MUST make sure you are not treating your parents like children and disregarding their emotional needs. Best Wishes, Dave S

Ellen, I can relate to your husbands desire to avoid others and "crawl into a hole". I felt the same way. I was diagnosed at stage IV two years ago. The prognosis was gim (6 months at best). Of course we were flooded with caring and well-meaning family and friends. Everyone was entitled to know the "scoop" so I had to keep going over and over the same dismal crap. All I accomplished was to make both them and me feel awful. It was NOT fun. Now can you begin to see why your husband might not be clamoring to entertain people? I think it may be different for the person with LC and caregivers. Or perhaps it's really just a personality thing. I really don't know. I just wanted to share my perspective. By the way I'm not quite as anti-social as I was in the beginning. Perhaps I've grown a thicker skin by now? Best Wishes to us all, Dave S

Outstanding! Obviously we are all hoping to learn a few things along the way too. I hope you don't mind tag-alongs and free-loaders Dave S

Thank you all for the good wishes. They are greatly appreciated. My current situation is that I had a CT chest and abdomen last Monday and I'm trying to evaluate the results. I see my onc. tomorrow but I got an early look at the radiologists report and it's a bit confusing. I have a wee bit of growth in my adrenal tumor and new spots in my opposite lung from the primary. They are also talking about new mets to my ribs possibly explaining the increasing pain I've had for a couple of weeks now. Knowing my onc. as I do, I'm sure he will want to crank up a 3rd line chemo regimen immediately. But you all know the effectiveness stats for 3rd line chemo..... My real quandry is how to proceed from here. I've been on an alternative therapy which I think holds great promise but I've only been on it for 8 weeks as of the scan. Probably not enough time to pass judgement based on this set of scans. Somehow it seems I'm always trying to make important decisions based on insufficient data..... One thing I already decided is to ask to go back on Zometa for the bone mets. I had it 2 years ago but stopped after the bone mets resolved. I think I had 12 monthly infusions at that time. I have to remember that my personal goal is eradication of my disease, not just long term management. Greedy, aren't I??? Best Wishes to all, Dave S

Katester, Well I see we are practically neighbors. I'm just East of Rochester, NY. You might want to take a look at a thread in the "Alternative and Complementary Therapies" forum. It's entitled "Anti-Inflamatories prior to PET Scan?". Best wishes on your upcoming scan, Dave S

Hi All, First of all I have never seen the magazine, but when I looked at the website I see they give free subscriptions to cancer patients. That tells me they make their money from advertising. So it's probably not realistic to expect them to take any position which might irritate their advertisers. I'm going to take a wild guess and assume their advertising revenue comes largely from the big drug companies. Bottom line is we can't expect them to "bite the hand that feeds". Makes sense to me. Does it make any sense to you? Just my uninformed opinion.... Best Wishes to All, Dave S

Thank you all for your kind responses and wishes. They mean a great deal to me. Elaine, no I haven't gotten my scan results yet. I'm getting annoyed about that. I hate to be critical but I only need timely attention about twice a year, so I get annoyed when they appear "to busy". I had the CT techs create a CD with the images on it and delivered it to my Onc. for a quick read. I should have brought it home and looked at it myself!!!! I'll be asking them to fax the radiologists report to me this AM. My fear is that I'm being discriminated against due to my having chosen to try a non-traditional form of treatment instead of more "shotgun chemo". Best Wishes to us all, Dave S

My Dear Friends, Two years ago today I went for a chest xray due to a slight "rattle". My nightmare began immediately. "Come with me, we have your Dr on the phone and he needs to speak with you now". I was diagnosed at stage IV with mets to left hip and left 2nd ribs, mediastinal adenopathy and a 5 cm primary RLL. Of course I was told of the customary 6 month life expectancy. Interestingly I didn't believe the 6 months thing then and I still don't believe it now (although I still hear it from time to time). So for those of you who are earlier in the journey than I am: Don't believe everything you hear... I believe we can have impact on our disease and I believe the things I have done have made a difference. Keep the faith, Dave S

John, As always your posts are insightful. Like you I am concerned that we seem to be painfully slow in bringing truly advantageous lung cancer treatment to practice. However it becomes easier to understand if we think about the mechanism by which treatments are "approved". It gives us a great sense of safety and security to know that FDA approval is a long and expensive process. After all we must be protected from quackery at all costs, right? Well there's a problem buried in there. The most recent estimates I've seen for the cost of taking a drug through the approval process is $900,000.00. Now where does that money come from? It is a "loan" of sorts from the major pharaceutical companies and is only granted if there's a reasonable expectation of it's being "repaid" with future revenues from a marketable product. This explains why only expensive new treatments are ever brought to market. Think of it this way. Let's suppose you are very smart AND very lucky AND you stumble across a non-toxic substance which kills cancer instantly and leaves normal cells unharmed. Wonderful, that's our long dreamed of "silver bullet". OK, now how do you share this good fortune with the unfortunate victims of this disease? Well you can't, you can't even give it away. If you try you are breaking the law. You can't even talk about it until you have "proven" to the satisfaction of the FDA and the orthodox medical community (including the pharmaceutical companies) that it is effective and safe. How do you do that? Simple just pony up that $900 million for phase I, II and III clinical trials. By the way, the pharmaceutical companies are not your friend in this endeavor. Your new cure jeopardizes $10,000 worth of revenue for each chemo treatment for each patient (oh yes, it makes linear accelerators obsolete too). My point here is that this is not a simple problem to solve. We should not assume that if a treatment was effective and safe it would already be "approved". I wish we had a better system, but we don't. I hope I haven't offended anyone here. I really think we all need to ponder these things and stop making so many potentially flawed assumptions. Best Wishes to us all, Dave S