dcramsey Posted March 16, 2018 Share Posted March 16, 2018 Hello all! It's ironic, I haven't felt this good in years, but I've been diagnosed with metastatic lung cancer. I got my treatment plan today. If I do nothing, statistically, I've got a year. With aggressive chemo, 5 to 7 years. I was diagnosed with rectal cancer 12/01/2016 and I've been through chemo, radiation, surgery and chemo. I've got some decisions to make and I certainly appreciate that you guys are here! I'm in North Carolina and I'm being treated at Duke Cancer Center. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 16, 2018 Share Posted March 16, 2018 Welcome here David! If you are comfortable, give us insight into the type and stage of your lung cancer. Knowing this will allow us to give you treatment tips and tricks feedback. It sounds like you are an experienced survivor given your bout with rectal cancer. You can’t be too far out of treatment. Lung cancer survival statistics don’t mean a lot these days. The projections are based on inaccurate data (i.e. cause of death not determined in many cases) and we’ve experienced a revolution in treatment and outcomes in the last 2 years. Advances in Targeted Therapy for adenocarcinoma NSCLC and immunotherapy for both adenocarcinoma and Squamous cell NSCLC are dramatically altering the survival curve. Moreover, radio oncologists are getting aggressive treating stage IV disease with precision radiation with curative intent. Duke has a world renown cancer research and treatment reputation so you are in a good place. I once had a six month life span prediction but have managed to live 14 years from diagnosis. I say that because if I can live, so can you. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted March 16, 2018 Share Posted March 16, 2018 Hi David and welcome. I 'm sorry to hear about your diagnosis. I'm also an "experienced survivor" having had 3 cancers. My lung cancer is the most recent and it was stage 1, needing only surgery. My second one was a rare and aggressive form of cervical cancer that was stage 3, and for that one I had aggressive surgery, concurrent chemo and radiation and additional chemo. My prognosis, as stated by my oncologist, was "dismal" . Today, almost 7 years out, I have no evidence of disease. I do have ongoing evidence of treatment, though, in the form of long term side effects. It's well worth dealing with them. My life today is good. I'm hoping for no recurrence of my lung cancer. In the year or so since my lung cancer diagnosis, I've learned a lot about it. Much of what I've learned has been from these forums, and I've found the participants to be a good source of hope and support, as well as information. There are a lot of new treatments our there for lung cancer and new ones are being approved or are in clinical trials all the time. Statistics are of limited usefulness in decisionmaking in part because they deal with large numbers of people, and can't predict outcomes for any individual. Also, for lung cancer in particular, new treatments have made the old stats obsolete. I suggest you learn all you can about your type of cancer and what kinds of treatment are available for it. ' As Tom says, if you're comfortable giving us info about your type of cancer, you'll probably hear from others here who have had the same thing. Hang in there, David. I look forward to hearing more from you. Bridget O Link to comment Share on other sites More sharing options...
dcramsey Posted March 16, 2018 Author Share Posted March 16, 2018 Thank you for your kind replies. The cancer is an adenocarcinoma , and because it is metastatic, it is classified stage 4. I've done a bunch of alternative treatment, IV vitamin C and Alpha lipoic acid. I'm somewhat embarrassed that I've been to two different herbal practitioners and I have enough supplements to start a small store. I really like and trust my Oncologist, I'm just hoping for the best. Link to comment Share on other sites More sharing options...
BridgetO Posted March 16, 2018 Share Posted March 16, 2018 Hi again, Have you had biomarker testing (aka tumor genetics)? Bridget Link to comment Share on other sites More sharing options...
dcramsey Posted March 16, 2018 Author Share Posted March 16, 2018 I am having the genetic testing done as we speak. What is this forums prevailing thoughts on any of the alternative treatments available? Plant based diets, etc.. Link to comment Share on other sites More sharing options...
BridgetO Posted March 17, 2018 Share Posted March 17, 2018 Hi David, I don't know about "prevailing", but here are some of my thoughts on alternative treatment. I prefer to think of it as 'complementary" rather than alternative. During my treatment for my various cancers, I've gone to a "traditional" medicine clinic, where I've had acupuncture, shiatsu, supplements and chinese herbs, and consulted with a naturopath (we have those in Oregon; i know not every state does) . I found the acupuncture helpful in dealing with nausea after chemo, and also for anxiety. Shiatsu massage was relaxing and stress relieving. The naturopath was wonderful, she knew a lot about cancer and i learned more from her than I did from my MDs. She also was well up on conventional treatment. She made dietary recommendations some of which I followed some of the time. I saw all of this as an adjunct to my conventional treatment, not a substitute for it, and the clinic saw it that way too. Some of it helped me feel better during treatment, I don't know if any of itdid anythint for the cancer. Much of it, I think, promoted general good health, which can't hurt. None of it was expensive or very radical. I'm very comfortable with that. I'm suspicious of "cures" that are unproven and often expensive. I saw a chiropractor who was very helpful for non-cancer-related headaches. When he found I was being treated for cancer, h e encouraged me to see some people who had some sort of electrical device --can't remember the details-- a box or electrical field machine, that would rearrange my cells or something and would fix me up better than conventional treat i also had a well-meaning acquaintance who thought I shouldn't do that "poisonous "chemo, but should instead heal myself with green juicing. These are some examples of thhings I'm NOT doing and am not comfortable with. This is just my opinion and you'll probably hear others on this forum. Bridget O Link to comment Share on other sites More sharing options...
dcramsey Posted March 17, 2018 Author Share Posted March 17, 2018 BridgetO, Thank you for the time you spent on your reply. I have been the butt of my own joke because I have to admit I've fallen for everything. I spent a small fortune on an alternative treatments, I had IV Vitamin C and Alpha Lipoic Acid, I have enough supplements to start my own store. I bought one of the PEMF mats feel great, so it's hard for me to believe I'm as sick as they say I am. I have a number of decisions to make and I'm sorting through my options. Link to comment Share on other sites More sharing options...
LexieCat Posted March 17, 2018 Share Posted March 17, 2018 Hi, David, I'm fortunate enough to have had a very early cancer that was hopefully "cured" by surgery. One of the things that went through my own mind, though, before I knew exactly what I was dealing with, was Steve Jobs, whose cancer might well have been cured or successfully treated so as to greatly extend his life, had he not rejected conventional medicine in favor of "natural" treatments. IOW, he wasn't supplementing, he was supplanting his doctors' recommendations. I agree with Bridget--improving one's overall health can only help the situation, and maybe make you more comfortable and the treatments more bearable. I sure wouldn't turn my back on the amazingly successful new medical treatments available now. And because some supplements can actually interfere with medication, I would make sure my oncologist knows about everything I'm taking. My two cents. Hang in there, it's still early days and you may be one of those people who responds beautifully to treatment. Link to comment Share on other sites More sharing options...
BridgetO Posted March 17, 2018 Share Posted March 17, 2018 I agree with LexieCat about checking supplements out with your doctors. When I was starting chemo, I hauled my bag of supplements in to be reviewed by the oncology pharmacist. All but one were OK'd by him. I know what you mean about it being hard to believe you're as ill as they say you are when you feel just fine. None of my cancers made me sick or caused me pain. My treatment certainly did! But I'm alive today, despite "dismal" prognosis, so it was worth it. We each have to make our own decisions about treatment and it can be hard, because nothing is guaranteed. Best wishes to you in your decisionmaking. Bridget O Link to comment Share on other sites More sharing options...
Tom Galli Posted March 17, 2018 Share Posted March 17, 2018 David, I endorse the ladies' views of alternative medicine. If it is supplemental to conventional oncology, and coordinated with the oncology provider, it can do no harm. Our community of lung cancer survivors is very ripe target for scams and the like and these, unfortunately, often suggest sure-cure alternative therapy in place of conventional medicine. I have fourteen years of surviving a late stage diagnosis and eleven years of participating in on-line forums involving lung cancer. I've seen so many attempts by scammers to steer lung cancer sufferers away from conventional treatment and I am angered by that tactic. Neither alternative nor convention medicine can provide a "sure cure" of lung cancer. Indeed there is no cure for our disease. I still see my oncologist 2 times a year because the probability of another outbreak for my type and stage is about 66%. I have two essays (blogs) that address alternate medicine as curative treatment -- here and here. These convey my personal views. The LUNGevity foundation (sponsor of this forum) is the largest non-profit underwriting research into science-based methods to diagnose and treat lung cancer. The important distinction between alternative therapy and science based therapy is the latter is repeatable. Conventional lung cancer treatment is an arduous slog with an uncertain outcome. Many of us here have been down that path and have achieve a decent outcome. I don't know of one individual who has a scientifically validated alternative medicine curative outcome. I do know of people who've experience extensive life after diagnosis with no treatment. Indeed, for some very small percentage of those diagnosed, their cancer stops growing and metastasizing without any treatment. I know of one person who fit this category and his recovery was so dramatic that he was discharged from hospice care. But he passed away a year or so after hospice discharge from recurrence. While there are no miracle cures, there is effective treatment. Both alternative medicine and conventional medicine will cost money. I personally choose to invest in treatment that has a scientifically validated probability of success. I did and it worked for me. Stay the course. Tom Link to comment Share on other sites More sharing options...
dcramsey Posted March 18, 2018 Author Share Posted March 18, 2018 I sincerely thank you all. I have to admit that I'm scared. I can't tell you how much I appreciate you empathy and care. David Link to comment Share on other sites More sharing options...
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