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BoBennett

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Everything posted by BoBennett

  1. I see so many post/question that I want to respond to but I’m afraid that my suggestion may be the wrong one for the wrong person, so I can only talk of what I feel is a decision for me. Hope it helps At diagnosis my Onc was fairly consistent in saying that he didn’t want to put me through radiation as well as chemo. Radiation only if I needed it for pain. Now that the mets have responded, outside of the lung, he still hedges toward not having Radiation. Now that I’m more comfortable with knowledge of possible causes and possible curses as well as many of the harmful later effects of chemo and radiation I wouldn’t have radiation. That being said I’m too chicken to stop chemo even though I think that its as helpful as harmful . Like Donna said she had no problems with the radiation, sometimes its a crap shoot. Good luck in your fight.
  2. Its hard to understand what other folks feel but I have often questioned the difference between cancer tired and any other kind of tired. I was 6 months with cancer tired, not knowing I had cancer. I wasn’t tracking mentally and had difficulty just holding the paper, basically just not “feeling with it“. Its my understanding that the cancer sucks up nutrients otherwise intended for energy and body utilization. For me Chemo is a whole nother kind of tired. Anyway thats my take on it. Bo Betty, glad to see you didn't get blown away
  3. Personnaly I liked "and stop poking me with that d*mn stick", not that the cake thing wasn't funny.
  4. Debi, Ok time to stop arguing. As an off subject matter, I used to have an approach like yours, wonderfully disarming, ( OK not quit so wonderfully), ( I mean my not so wonderfully). Somewhere along the road I moved out of the box and to change anything one must work within, certainly not be forceful in approach. I graciously accept you comments. Bo
  5. I have to say you said it all in your response, you made my point. Yes I am angry, because the school of thought is we,( individually and as a society) are not responsible for our diseases, therefore, not responsible for our recovery. Worse the folks I see and hear blame others for their ails. I choose to hold myself accountable for my recovery because the best minds and billions of dollars, over many years, can’t come up with a pill that will cure cancer. There are thousands of treatments, ( alternative and mainstream) and thousands of trials that show only promise, yet the magic pill remains illusive. I believe that steams from the fact that we as a society are unhealthy, and an unhealthy body deteriorates. ( today’s health standard is an absence of disease). And what is up with “I also pray you be knider to yourself and let go of the past--you are not” to blame. If I go by that thought I'd give up and wait for a cure, cause I'm not to blame. Good luck in your fight.
  6. I would politely disagree with your take, for the reason that the reality is that smokers are far more likely to acquire LC than non smokers. Who knows why some non smokers get LC, but it is past odd that 85% of those who are LC victims, do smoke. Of all the data it is amazing that some still say smoking and LC are not tied together. Its also peculiar how different people have different attitudes towards how they will approach the disease, when the alternative is what it is. I’ve watched enough folks pass that traded their life for cigarettes and continued excesses, after DX, to know that they are not in the group that somehow squeaks by and survives. I agree that curbing excesses may not help the cancer go away. However curbing excesses will lead to a healthier body and cancer has a harder time taking down a healthy body. Anyone that would argue that logic would also argue that smoking doesn’t lead to cancer. I completely believe that going back to nuts and berries and living in the forest would boost my chances. Knowing that won’t happen I believe it better to hedge my bet where feasible than to say, oh what the heck. Good luck in your fight
  7. I’m sure I’ve offended some folks with my less than diplomatic way of presenting my thoughts and I sincerely apologize. I guess the softest way I can put this is if a person sits back and waits for someone to help them they are not being active in their recovery, or for that matter blaming the drug dealer for their ails. If we have an option to; lesson the severity, (exercise), learn about the disease through many sources, ( because as we know cures and causes are economically driven so it is tough to find truths) eat natural foods instead of processed and enriched junk, and in general take part in our treatment and we don’t, then we are not being active in our recovery. Every person on this board may well be active in their treatment I wouldn’t know by reading one way or the other. I can tell you that out of the many I have watched succumb to this disease not one not one has got off their *ss or changed their diet. Something goes wrong and a change is in order. No change, no change. I did not just gather my opinions from this board and I have not heard anyone on this board talk about not being active in their recovery and I realize that some can only be as active as they can. The last one, (who died in April), to do so was a tough as nails underground minor who rode his ATV up to the point of his last days, being ingenious and mounting an ashtray on his ATV as well as his wheel chair. Unfortunately his idea being active in his recovery was accepting that chemo and other drugs were his only part, or hope and blaming an unhealthy work environment. This is not my only example this is the rule that I have seen. I have yet to find a group that talks about and practices exercise and diet. I looked for months, contacting the major hospitals and such for a group, haven’t found on yet. You can’t tell me that the majority are infirmed to the point that they can’t attempt to exercise. Most won’t address it or just say they can’t do it. And it’s a fact that exercise and diet are condusive to good health, and good health is far preferable in stressful situation to bad health.. I kind of lost perspective on who I’m talking to so I need to back out for a while. Hope no one is too hurt by my thoughts.
  8. Since I was diagnosed I have done a considerable amount of reading to try and understand why some do and some don’t get cancer. I became an avid exerciser when I quit smoking in 1986 but made no attempt to clean up my diet and for the life of me I can’t understand why I got lung cancer because I thought I was healthy. Incidentally, I am physically fit even though I have cancer My mother died of lung cancer at my age, she was a long time smoker who smoked up until the five year survival point after loosing a lung and breast. Others in my family have also died of cancer I am the first and oldest of my generation to get lung cancer out of a bunch of smokers. For two years I worked in an environment that was horribly smoke filled and while I believe that it had an undesirable effect its hard to say with certainty. Personally I believe that smoking and other environmental factors are only triggering factors in an already compromised immune system. I am putting my efforts into the belief that it is easy for and unhealthy body to be compromised by cancer and that you can not kill a healthy body and one can get a healthy body through diet, exercise and generally treating your body well. Statistics show over and over that athletes, peoples who diets lack fats and such, and groups such and religious organizations who treat their bodies as “a temple” have far less incidences of lung cancer, or cancers in general. The young folks of today are coming of age with a media, and older genetation, that places emphasis on taste rather than good diet and marketers that put out misleading labels based on the latest fads for loosing weight. I certainly believe living with a constant bombardment of carcinogens play a role but I ultimately believe that we have taught the young and healthy that it is OK to mistreat your body and we further that thought by showing the aberrant statistic; uncle Charley smoked until he was 95 and he never got cancer. Anyway this has become a sore spot with me because I have yet to find a group that is active in their own recovery and I don’t want to sit around a wait for someone to fix me as I don’t believe there is a someone.
  9. This is not aimed at anyone this is my opinion based on the realities surrounding this diseases. Whether or not anyone is saying that we should continue to smoke or not is not the issue. If we as lung cancer folks did something that undoubtedly contributed to our ill health and then don’t take responsibility how can we ask for help. For sure I have no love loss for the tobacco companies. And yes, I believe they do all they can, legally and illegally to see that we have a hard time quiting smoking. It is a horrible addiction But as I read the argument/discussion it appears to be that many folks want to pass the buck on responsibility. I can’t help but think if I, (or anyone) continue to treat my body badly, then how can I ask for help. I can’t help but think if I shout from the top of a building that I have lung cancer and continue to treat my body badly, that a good portion of those listening would rather I jump than impose on them, rightfully so. God helps those who help themselves. Again I know that smoking after DX is most likely not the rule, but the exception, but in my small world I see it over and over. And I would love to see a cure that would allow me unrestricted abuse of my body, (because it feels good to drink, drug and smoke) but unfortunately we have a better chance if we treat ourselves well. Also, the reality is, that lung cancer is associated with smoking and when a non smoker watches the undisciplined abuse themselves and then ask for help, especially if they continue to abuse themselves they have no pity on us. No doubt that some folks get lung cancer who never smoked, but again no doubt that 85% of us did. There is a connection. There is another part to this. It is those that follow our lead. When we teach our young that we don’t accept the responsibility for our ill health, and blame others, then statistically they will acquire these bad habits and in turn lung cancer. We can not allow ourselves the luxury of saying we have not aided the disease in some way and blaming some external factor as we have no control over the external we have the best control over ourselves. There I said what has been building up. For those I may have offended. I hope you take my opinions as intended, that we need to see things as is, not how we want them.
  10. bean_si wrote: Logically, if anyone should be blamed, it should be the tobacco companies. Where is the thread to argue the responsibility. I think this is an extremely important point.. Not only to those of us who smoked prior to diagnosis, or those who continue to smoke post diagnosis, and how it can affect our surviving the disease. But to the fact that we want more research done but we don’t want to leave behind habits that undoubtedly contribute to our ill health. I would much rather belong to a group that wants to help themselves but statisticaly 85% of lung cancer folks were smokers and that means I don’t have a choice. So if you get on Oprah and don’t take responsibility and say it’s the tobacoo companies fault, I will ask for equal time and ask for research monies to help me survive I won’t ask for money to help me continue to destroy myself while I enjoy known bad habits. I realize that not all folks continue a non healthy path but it only take a few vocal ones who won’t take responsibility to ruin it for those that want to try and survive Take responsibility!!!
  11. I read the article and the context I believe was hope is a vital part to recovery, conversely if you have no hope one gives up. My particular situation for hope was based on knowing that the medical community says stage IV has a mean survival of 7-8 months, and knowing that I had been at stage IV for that amount of time prior to diagnosis, was a hope draining thought. When the doctor read stage IV into his Dictaphone thing I asked him, “how long do I have” he laughed and said, “your healthy” pissed me off, I wanted to know what to expect. During the next month I point blank asked three times my prognosis, each time he ignored me other than to say ask me in three months. My doctor left me with my own devices to find out how long I would be around. Admittedly, for a brief period I thought I would not be around long and I started preparing, however, in the meantime I learned all I could and did all I could with only the thought that I would maybe lengthen my time and be more comfortable. As I became more comfortable that snowballed into hope and that helped create more drive to survive. Now my goal is nothing short of survival and hope gave me that goal. Personally I believe one finds true hope through their own psyche, not through their Dr or Nurse. That being said I believe they can knock you down fast by telling you a predestined time frame. And, Elaine if I had to say one thing was dominant in my life it has to be that I have spent it “hashing out” what in in the world is it all about. Anyway y’all keep on hoping and searching for hope, it is somewhere.
  12. Elaine Beta Glucan, the micronized stuff. Of the thousands of supplements this is the only one that I wanted to try. There is such a hit and miss approach to all of this that it is hard to spread money and hope on a maybe. I did my research and feel that this stuff does what they claim, ( claims are backed by research and trials in a medical school) the claim is; it stimulates or aggrevates the macrophages/monocytes into action. They claim also that it helps allieviate side effects and such from chemo and radiation. I can surely tell you this, I went from wandering from couch to bed in four days following taking this stuff. And I have accepted the chemo with almost no side effects and have continued to feel beter each day, put back on the 20 pounds I lost prior to being diagnossed and have grown long hair in the process. Its hard to say with certainty what the catalyst was but I won't change a thing I have changed and that means I will continue to take Beta Glucan 85 dollors for a two month supply. Good luck on your fight
  13. Wanted to pass on some info. I had a pet scan on 8/4, The lung tumor is slowing up considerably, the mets to my arm, and hip have a “complete resolution”. The activity, in the mediastinal area “is no longer demonstrated. The lesion of the right ileal has complete resolution. And there is no evidence of metastatic disease to the abdomen, nothing in my right orbital and normal normal normal in my inerds. Havn’t talked to my doctor yet and he may yet say, “well its not necessarily great news, hah what does he know. I hope this doesn’t come off sounding too arrogant but I am a guy that looks at things straight in the face and I don’t know any other way to present it The info I really want to pass is what I think helped me go on the fast track. Other than luck, being blessed and having a lot of folks praying for me I made a lot of changes in my life. At 53 I am finally following the advice of my kindergarten teacher and am eating lots of fruits and vegetables, never ate them before. Bologna was my idea of a good meal. I am no longer eating or drinking anything that is processed, as best as possible all natural food, and very little meat. I no longer drink cup after cup of coffee, only maybe one cup in the am. I drink lots of water, no chlorinated water only spring or from a well. I exercise daily, and as hard as it was at my lowest point, I forced myself to do what I could. I take one supplement that has been shown to kick start the immune system. Early on I made the connection between a healthy immune system and fighting the cancer and my goal was to build it in any way I could. That included resting, not to confuse exercise with not resting. If I became tired in the least in my day to day I stopped and let my body catch up. My, our, worlds have changed forever, and in order to survive we must accept that we can not remain with our old habits. Most importantly we do have control, most importantly if we don’t we need to find it. We can help dictate our fate. After three months of non stop reading to learn about this cancer stuff, my conclusion is cancer is not the cause, it is a symptom of a body, ( immune system) that somehow got out of whack. We have been programmed to accept that once we get the cancer it is a forgone conclusion that we have no control over our fate and that modern medicine is our best and only hope. I call “bull shi_”, we have other options. Though I will concede that the chemo most likely helped backed up the cancer. I recognize that there is often this kind of remission following initial treatment, only to come back with a vengeance at a later date. So since I was blessed with the ability to help control my fate, I will take this wonderful opportunity to increase my vigilant response to getting cancer. The fight is on
  14. BoBennett

    Zometa

    Thanks to all for the responses. They are a big help. Bo
  15. Glad to hear good news, and its great to get the information the way you laid it out. Information is the key to this fight, we don't know what we don't know For some of us our oncologysts are not personaly oriented toward our specifics problems or styles Thanks
  16. BoBennett

    Zometa

    I had an X-ray of a bone met, after three months of chemo, with Zometa. The comparision is night and day. I have read nothing but positive things on Zometa and I believe the Zometa did its part in taking the bone met from night to day. Recently a friend passed away and three moths prior his hip broke, (hip met). He was in the same clinic that I am now and he was not given Zometa. I have no idea why he wasn't given this drug. So for those with bone mets it might be worth talking to your Doc about its use. It sure seems to be helping in my case. Does anyone know if cancer can metastasize to the bone without lymnode involvement, ie through just the blood? Bo
  17. Elaine & Dean, I appreciate the responses. These are definitely questions only I can answer. The denial thing when one feels good is what has me going and I am a hard core realist and don’t believe in fairytales. Yet when the days were bad I was bummed to acceptance and now that the days are good I believe there is a way to beat this, but not if I’m toxified to the point my body can’t fight. I am not contemplating quality of the last days, though that is a good thing. I believe that other than spontaneous remission and miracles there are no cures to be had, and that sooner or later it always ends where it ends. That being said, a small percentage of folks seem to squeak by with good quality for many years and many of those folks seem to make life changes, along with alternative treatments and leave bad habits behind. I well understand that 99.9% of lung cancer folks ultimately succumb and statistically I may very well be in that range, if so I hope to be strong and accept my fate. But I don’t necessarily believe that choosing no chemo will cause my demise any sooner than with the chemo. I choose to believe that strengthening my body will give me quality and quantity. Time wise I’m not close to any decision but I like to be ahead and have a clear mind when thinking about these things.. I need to find a doctor who will talk to me first. I have asked my oncologist point blank three times what my time frame is , he gives no answer. After diagnosing me as stage IV he responded, “your healthy” and I wasn’t feeling particularly well at that point. Anyway, anyone out there have a good outcome choosing no chemo.
  18. BoBennett

    Fatigue

    Hey Elaine I’m a bit uncomfortable recommending a supplement but this one worked for me, (I think) As best I can I will try and explain but this stuff is so deep that I could be totally off base. It is called Beta Glucan, it supposedly stimulates or aggravates the immune system and causes the Macrophages to go into action. Macrophages come from the monocytes. I have had so many blood test that I have sometimes taken this supplement prior to a test and sometimes not. When taking the supplement prior, my monocytes have been high, when I didn’t take it prior they have been in range. Ultimately these things fight the cancer and are needed. Any thing that our body can do to push back the cancer will ultimately give us less fatigue; Since September I have had symptoms that became debilitating over the next six months I was walking flat footed and had no steam. I began taking this supplement in early May and within three days I began to pick up, and by mid June I had to admit I not only had no pain and more energy but I actually felt good. I am not at the top of my game but I am getting close. This supplement was researched in a medical school, and the results are real. Those results that this product stimulates or aggravates the immune system and causes the Macrophages to go into action. Personally I use the micronised stuff and not the high mg doses if it doesn’t get into your system it can’t do any good. Anyway it is roughly 85 dollars for a two month supply. Beyond that I believe that just eating more fruits and vegetables, and getting moderate exercise is definitely a help.
  19. Hello to all those gutsy folks who decided not to go chemo or radiation. I am looking into stopping chemo at some point,. for no other reason than I think it will ultimately compromise my immune system and I believe that our bodies are the ultimate fighting weapon. I don’t know for sure, if and when, as I’m just beginning to look into it. I am (relatively) healthy at this point and I was not prior to chemo. Yet something in me tells me it wasn’t the chemo that got me back up and even if it was I am in a better position than prior to chemo. Any one out there with experience at stopping chemo while in decent health and how did it go. It is a strange roller coaster ride. In the beginning when I was diagnosed and was down, my thoughts were to not take chemo and such, and basically let the disease take its course. Now that I feel (relatively) good the fight is on. What worries me is that if I quit chemo, and I begin to feel down I may lose that fight I have now. I kow these are mostly question only I can answer but I am just wondering how it goes for others. There is a way to win at this disease, we just have to find it!!!!!.
  20. Elaine, That is part of my point, not only might I not have cancer in my arm, hip or eye, I may not even have lung cancer. I can only go by what I’m told. All of this seems to be a guess. When one searches for info there never seems to be anything definite in this cancer area. There are so so many clinical trails that are taking place with such subtleties that conclusions are in the form of; survival went from 14.3 months to 17.6 months. I don’t have much of a desire to increase misery by a few percent. I feel that the mainstream medical field is not looking for real answers, they are trying to cure something that many of us bring on ourselves, bad diet unhealthy environment, smoking, lack of exercise,. and on and on. I think that they are looking for a cure that will allow me to smoke, eat pork rinds and drink cokes all day. I am willing to change my lifestyle, but doing so is only based on my own logic, there isn’t much info, (hard studies) showing that lifestyle changes are more beneficial than sucking down chemo and having your bodies own defense mechanism ruined. No I don’t have clubbing that was ruled out by several doctors who were leading me into a disectomy, neck fusion. They all said that my arm pain stemmed from a cervical problem. Out of 10, ten doctors they all ignored the lumps on my arm, even the doctor who did the needle biopsy said to me in a condescending manor, “we all get bumps on our arm after 40. And when I questioned the DX of the mets my question was are there non invasive procedures that on might have so as to not compromise the bone. There was no answer for that question. There were responses that the doctors make assumption based on symptoms and test. I had a bone scan, pet scan, CT scan X ray. I was told prior to the bone and pet that they would be definitive. My doctor talked of putting a rod in my arm to help hold it together. If I listen to him I may have a procedure that will in all likelihood create a considerable amount of pain and if it is truly my last days I would prefer it to be as comfortable. I just having a bad day because I’m feeling the pressure about stopping chemo
  21. Sisre couldn't say Brother, said Bo Bo. I appreciate all the responses I have received from my posts. What I find interesting is that simple solutions like diet and other “natural type therapies are not at the top of the list, or the bottom, for clinical trials. For instance AlCASE was started by a fellow who believed exercise was a key to survival yet when I called them they had nothing on the subject. So one can only gather information from each another, alternative therapy sellers, or the aberrant Doctor and then we have to take a un-SWAG as to what to believe. We all bring our prejudices to the table when promoting or denying a particular therapy and I’m really beginning to get pissed that I can’t find simple answers that don’t leave a little uncertainty in the back of my mind. I total believe that ones own healthy body is the ultimate weapon against any type of cancer and that it will never be cured from traditional therapies as we are all different, some things works for one and doesn’t do for another I had similar thoughts prior to being diagnosed but they have definitely been reinforced following all the reading I have done the last three months. I have been on Gemzar/Carboplatin for 2 ½ months now. and my blood counts are getting worse after each treatment. So much so that I have never been in the routine, therapy always gets postponed. So before I have no immune system left I think I may leave the chemo behind and just work on treating my body better than I have in the last 53 years. So now I’m on a mission to find a doctor who will give me straight answers but my heart tells me they don’t exist, at least for the average person. Any way thanks to all for the listen.
  22. I’ve been reading about high glucose levels and that sugar feeds cancer, but I’m only able to find this thought on sites that ultimately sell something. I’ve not found this in medical l literature. Is this a prevailing thought in the medical community that sugar feeds cancer. Anyone know? Thanks
  23. Hello, I am beginning to question my DX. Though the primary has been biopsied nothing else has. I have had a bone scan, pet scan and x-rays on the rest. All these test indicated that my left humorus and right hip and right orbital are consistent with bony metastasis. I am reluctant to have them biopsy my arm or hip as if they are cancerous then it may further weaken the bone. After six months of miserable pain in my arm and hip, this pain finally left so that’s another reason for my reluctance. My oncologist stated if they did a biopsy on my hip or left arm and it came back negative he wouldn’t believe it anyway. Are there any procedures that are definitive for a biopsy on the bone that is non invasive or doesn’t compromise the already weakened area.
  24. Hello, I was recently diagnosed with stage IV lung cancer, mets left hurmorus and right hip and right orbital. Had symptoms for 6 months prior to diagnosis. I am 52, physically fit, non smoker, (quit 18 years ago) avid exerciser for 18 years. I am interested in talking with others that have similar staging and lifestyle. I have tried to wade through the many list and such and am having little luck. Is there any such thing as a group that believes exercising to keep a healthy body is a beneficial therapy, in addition to conventional and alternative. At present I am feeling great, symptom free and on Chemo therapy, and would desperately like to communicate with someone similar. Any suggestions Thank You Bo Bennett
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