lilyjohn

Hi Dean I too think your attitude is great. We were told also that attitude is 90% of the battle. Unfortunately no one bothered to tell the docters that their attitude was also important. As for worrying about the weight loss and chemo I have a comment. When Johnny was first diagnosed (tho the diagnosis left a lot to be desired) we were told he could not have radiation because he was stage 1V and had so much cancer(not biopsied just going by exrays) that it would burn him too bad. Later learned that radiation is one of the most important tools for at least comfort care in stage 1V. Well he had lost 25 pounds in about 2 months. He had pneumonia when he entered the hospital and was very depressed after hearing the diagnosis. Being told that after the first 6 treatments a CAT scan would be done to see how much (not if) the cancer had shrunk gave him the boost he needed. He started Chemo right away and had very few side effects. He did not lose anymore weight instead he gained back what he had lost plus 5 pounds and instead of getting weaker he got stronger. He went from being able to move air only half way down in his right lung to being able to move it all the way down in both lungs. Because of that he weaned himself almost completely off the oxygen. My point is that everyone is different and tho you have found an older docter that you seem to trust more don't let that be your only guide. Get that second opinion and remember if at any time a docter starts talking like he is giving up on you fire him!! Your attitude may be 90% of the battle but his attitude is 100% of decision making that your life depends on. Statistics are made to be broken. They are numbers NOT people and they do not take into consideration things like , love, faith and hope or attitude. God has the final say but if you are not careful man can sometimes over ride even God's wishes and plans for you. I say fight with all you have and when you think you can't go anymore say a prayer for strength and then fight some more. Giving up gives nothing but death. Fighting gives life, love and hope. What could do more for you than those things. God Bless you sound like you are a lot like my Johnny was and he was a very special man. Lillian

Am I the only one who believes that there is a cure out there somewhere? I think that there is a simple cure for every disease usually something that is natural. It will be found eventually if we don't destroy too many natural things on our planet. The problem I have is in believing it will ever be made public if found. Just remember right now medicine and pharmasuticals are the largest industy in the world. Billions of dollars are spent every year on testing, Medications and doctors visits. If a simple cure were found for cancer many of the major medical corporations and pharmasutical companies would stand to lose billions. For that reason I think that if such a cure is ever found it will either be kept under wraps or presented in such a way that they can charge outrageous prices for it. We have no option but to trust them but I have serious reservations. I find it very hard to trust docters for my own private reasons as many of you know. Why would docters who normally tell you to eat healthy and exercise and eat foods that build your imune system do a complete turn around when it comes to cancer?? As my mama would say there is something rotten in the woodpile!! Just a few things to think about. I believe it is time to put people in charge of medicine again and kick the corporations out!! Let them make their money making toys or cosmetics or whatever else they can come up with. People deserve people and they deserve to be treated as people and not have the final thought be only someones bottom line!!!!!!!!!!!!!! Lillian

Thank you for your reply Teresag What really gets to me is that the medical board does not even investigate what happened to Johnny. There investigations are just into procedures that are listed with each facility. They excuse mistakes, deliberate actions that take lives and lies as if they are the normal thing to do and questioning them is wrong. From most of the information I got just from their rejections of my claims it shows that they did not even look at Johnny's records or test results. Many of the letters did not even mention his name! You live in Portland so you are very close to where we lived at the time. We were in Centralia WA. The hospital there started the process that took his life then when Leyton Jump tormented him about the DNR and refused to treat him because he would not sign one he had him shipped off to Capital Medical Center in Olympia. I was there I watched but was so green and stressed out that I did not realize what they were doing until it was too late. I filed claims against Jump and both hospitals as well as the nursing home that gave him the Morphine in a nebulizer that started his problem. All claims were rejected. I got in touch with the office of public disclosure and found out that Jump had had 6 previous claims filed against him. One was for verbal abuse and another was for reckless endangerment. All cases had been dismissed most without even and investigation. Some were over 7 years old so I could not get a file on them but two of them I sent for and recieved. In one case he was charged with sexual abuse against a man. In another he was charged with refusing medication to a patient and verbally abusing her for asking. I know the emotional stress it caused me to file those claims. It is a process that requires a lot of red tape and reliving the horor of the events. No one will put themselves through that without good cause. Yet the medical board dismisses it with no investigation or if they do one that is just for show. I tried to get reports on both hospitals about claims filed against them. I wanted to see if anyone had made the same complaints as I had. I thought maybe I could see a pattern and use that to get something done. I was told all of those records are public and I could get them. I made the request then later recieved a letter saying that the first 50 pages are free then after that you have to pay $15 a page. Still I told them to send them to me. That was last February. I have yet to recieve one page. About 3 months ago I recieved an email from them asking if I would take a condensed version saying it would be much quicker. I replied saying that I would. I have yet to hear from them again. Now I wonder is the reason because they have had so many claims filed against them or is it that I am just being stalled? They say you have the legal right to know but getting the information is next to impossible regardless of that. If a person wanted information about those hospitals while trying to decide if they would put their life into their hands they would have time to die many times before they got it. To me that is outrageous. I have sent letter after letter to the medical board with additonal information. I quoted to them the patients bill of rights that they give out and showed them exactly how Johnny's rights were denied. They paid no attention. All they want to know is that the booklet is handed out. I want to see a law passed that gives us a way to get information quickly about both docters and hospitals. I want to have papers put in each docters office and in each hospital with questions about how the patient's rights are treated. The patient of caregiver should get the papers fill them out and send them to a board that would review each response and file it. All answers should be periodicaly checked against one another so if a pattern developes it will be caught and acted upon. I would also like to see them made available on the internet along with any and all claims filed against anyone in the medical profession weather they were acted on or not. Then and only then would the public have the information to make a decison about who they can trust with their lives. I believe too that every three months all information about mal practice suits and claims filed should be published in the local newspaper. Everyone should have this information readily available to them. It is time that the people start mattering again. Not money and docters egos!!! If they know that they are being watched and what they do will be known they will be far less likely to do to anyone else what they did to Johnny. I beg anyone who has cancer or suspects that they might to get all of the information that you can. Never trust one docter or clinic. Above all keep records. I kept records but did not go nearly far enough. I say keep a small recorder and record every word spoken and the time and date. Ask questions about every medication and the reason for giving it. Make sure you have the date time and the name of the person talking. Taking notes is not like having it recorded in their own voice!! They will be far less likely to do something not to your advantage if they know you are keeping watch and will have proof to back you up. Make certain to get copies of all test results and demand to see exrays. Don't just take their word for what it shows. You may not know what you are looking at but you will remember what you see. Later down the road that could be very important. I'm sorry if I go on too much but I have been through a living hell this past year and I want to make sure that if their is any way possible I can save others from the same pain. It is hard enough to lose someone you love to any disease and cancer is just about the worst. It is much worse to know that it did not have to happen when and how it did and too to have been used to make it happen. My love for Johnny and minimal knowledge let them use me to help kill him. I have to live with that. I ask myself everyday why didn't I see. Why didn't I make demands. Why did I trust. Life is just too precious. Keep informed and armed with information and never give up and most of all don't let the docter force you to give up. Fight them as if it means your life because it does. Lillian

I read what you are writing and I say why didn't I know these things a year ago. Yes we need to find a way to reach new comers. A while back I posted saying that I have written out the horor story of Johnny's treatment and death. He falls into so many of the caragories mentioned. The really bad news other that the worst nighmare of my life when he died is that no one will do anything about it. I have letters admitting what they did to Johnny from the medical board and they excuse it all. It seems it is important that each patient be given a booklet in Washington explaining their rights. It is not important that those rights be adhered to. In short a doctor can give a patient any drug he wants even if it kills him and even if the patient refused it. They decide the treatments and get away with anything they want and no one is willing to do any thing about it. It is a disgrace! I get so angry I want to see them at least exposed but the way things are that will never happen. My only option is to tell his story to as many people as I can. Word of mouth is sometimes better than all of the legal chanels that seem there to protect the medical field and pardon my language but the hell with the patient. During my research I also found out that it is legal for doctors to get bonuses from insurance companies if they save money by ordering less tests. If that is not bad enough consider it is a practice that not only private insurance companies use but medicare as well. Now I will tell you that if you did not read Johnny's story he had the run around for months, never had proper testing and was refused anxiety medicatio but given Vicodin knowing he was using it to try to help his anxiety. The hospital gave him a drug that he refused saying he had had a bad reaction to it and it was listed as one of his alergies. When he would not sign a DNR he was harrased and shipped to another hospital in Olympia where they decided that he needed morphine in addition to Vicodin even tho he had no pain. They never asked him if he wanted it and they never monitored him. They drugged him into a coma and refused to take his vital signs saying that he was in a natural sleep. After over 4 hours of me questioning they finally took them AFTER they bathed him and changed his bed. When they took him to ICU they did not one damn thing for him but bag him. The ventilator that we both expected was never used. They stood by and let him die. The best or I should say the worse part was that he had been exposed to mold for years and his first CAT scan said that he had nodules that were consistant to lung cancer that had matastised from somewhere else or fungus or several other things. He NEVER had a biopsy and the nurse and doctors told him he would never get better even tho he gained 30 pounds while on chemo. So you see I have no faith in any doctors. One will have to do a lot to prove himself to me. I think anyone who trust one completely is asking to die. Let's get the word out and when you see something wrong make noise in the papers or the other media and to congress. Sooner or later someone will listen. I refuse to give up.Lillian

Hi everyone I have been out for a while with computer problems. I have seen the congress woman from Santa Barbara mentioned several times here and on another message board. I would like to know the story of her daughters illness. I am still gathering information. Someday I may be able to start that site I want but for now I am too busy making a living and dealing with one year aniversaries. Please let me know about her. I still hope someday I can get someone to help me fight for Johnny's rights that he was denied. The only way to do that now id for someone to be cited for what they did. Until then I hang in and just gather information any where I can. I wish you all the best and please don't let any doctor or nurse discourage you.They are not God and sometimess I think they just want to move on to someone else so they get you down so you will give up. Don't give in to them fight with all you have it is your life not theirs. Lillian

It will be a year in less than a month sense my Johnny died at the hands of the doctors we trusted to take care of him. I will never trust one so completely again. You are so right never leave a loved one alone with them. You have no idea what they do while you are away even for a few minutes. I hate feeling this distrust but had I felt it earlier I would not be beating myself up still. Sometimes doctors make mistakes. Other times they make decisions based on their own ego. Once in a while their actions are a way to cover up their mistakes and protect their ego. Life is too short so never trust 100% or you may learn as we have that our loved ones life means little to then other than just another case another number. No one wants to know the truth. They cover it up and hide from it. Why? I think it is because everyone fears not being able to trust. That leaves the door open for it to happen again and again. I too pray for your daughter and yours as well as my peace of mind. It is desperately sought after but very hard to come by. God bless you. Lillian

Hi Chuck and Shelly I am so very sorry that you have to be here. I wish that none of us had a reason to be here. I want to talk to all of you who are so new to the crushing heartache that we feel. I have a lot in common with all of you but in many ways my story is different as anyone who has read my other posts know. Johnny and I were never married. We met and fell in love 44 years ago but because I was younger than he was by 11 years(I was only 15 at the time) a family member broke us up without the knowledge of myself or my mother who loved Johnny like a son from the minute she met him. We both ended up marrying someone else. While my marriage of 41 years was finally coming to the end that had been put off for so long, a dream sent me searching for Johnny. To make a long story short we were together again for less than a week when he was diagnosed with NSCLC July8th 2002. He responded better to treatment than anyone expected but for many reasons besides the cancer he died December 2,2002 just 5 short months after we were finally together. My heart is so broken and I feel like someone just took a hatchet and chopped off a peace of me. I'm sure that you all know what I am talking about. I think that life can play some dirty tricks on us. Sometimes still that is all I can concentrate on. I know tho that as much as I am hurting that I would not trade that 5 months for anything dispite the pain. It is so true that it is better to love and lose than not to love at all. That doesn't take the pain away but sometimes the love is all that sees me through the day. I can't voluteer anywhere because I have to work to live. I did choose a job that is very low pay but it gives me a chance to work with the forgotten people. The ones who are old or sick or both. I find that because of my own heartache and experience that I am very good at my job. I don't rush these people to do things and I take time to listen to them. I want to give to them all of the things that my Johnny was denied. Sometimes it is so hard because most of these people are in their 80's and 90's and we lose someone far too often. I wonder sometime if I am putting myself through the trauma of my job for nothing then when one of my people smiles at me or hugs me and tells me that I make a difference to them I again feel like that is the purpose for all of my pain. I have to be here for these people. I have to believe that or I don't think I could survive. I live a long way from my children and grandchilder but as much as I love them I could never go back to that life. I get so lonely but I know too that I could be in a room with a thousand people and that would not change. It is the feeling that there is nothing else to wish for or dream about that is the hardest. The 5 months with Johnny was the fulfillment of all of my dreams what is left now? I think you should know that there will be days when it is better and you think that you are starting to heal. I have had so many of those days but one little thing can set me back for months. Life goes on around us but we feel like we are no longer a part of it. The only thing that we want is what we can no longer have, to be once more in the arms of our loved one. To hear his voice or see his face to know the joy of him saying a simple "I love you" or "thank you" or to hear him call you one of the special names that he had for you. How I ache just to feel him reach out and touch my hand as I pass by once again. I know those things will never happen again. Being seperated for so long was so painful but there is no pain like the finality of death. Each day that comes now is the aniversary of some crisis or something that had it gone differently could have made so much of a change in the outcome of Johnnys sickness. Each one of these days torments me. Every memory is just so intense. I live them over and over. I value the good memories so much but in many ways they are even more painful. There are days that I wish that I could forget everything and others that I am afraid that I will and lose what little of my Johnny that I have left. I am not telling you these things to upset or discourage you. I just think that you should be prepared. Once your heart is broken and so much of your life is taken from you it does not heal overnight. It has been over 10 months sense my Johnny died and the pain at times is even sharper than it was at first. I love him more everyday and I miss him more everyday and I think you too will find yourselves with those feelings. I think that they are normal. A support group is a good idea tho I could never make myself join one face to face. I did join one through cancer care on the internet and I think that got me through the first 4 months while I was in a stange place all alone dealing with something that no one ever expects even tho we know the posibility. Once again I say welcome. There are some wonderful people here and they know so much about both the disease and the loss. Many I pray who will be future survivers years from now. Pray for a cure and reach out to others. And above all lets work to change the attitude of people toward cancer. No one is a lost cause until God says so. Lillian

It bothers me that once they discovered a link between smoking and lung cancer that they quit looking for any other causes. They just assume that it is smoking and they have spent so much money trying to educate the public about the dangers of smoking that they have gotten into a rut with that idea. Now if they find other causes they will have egg on their faces. If I have learned one thing in this past year and a half it is the doctors never want their words questioned. That can lead to serious consequences. Too many people assume to many things about lung cancer. They have put so much into the negative outcome that they ignor the positive. They treat every person diagnosed with the outlook that sooner or later that person is going to die of lung cancer. Why? Because they are blinded to things that matter like faith, hope and love as well as positive attitude. We had a chemo nurse tell us that attitude is 90% of the battle yet when Johnny had the best attitude that very same nurse told him that he had no chance of ever being cured and that he would be on chemo for the rest of his life. So you see it is not the attitude of the patient that has to change but the attitude of the ones we trust our lives and those of our loved ones to. I think cancer of any kind should be treated the same as any other when it comes to attitude. They should say "this is a bad disease but we will not give up because we know that people do survive and that is what we will work for." There should be a standard protocol for testing. No matter what exrays look like everyone should go through the same testing to get the right diagnosis. There are so many things that actually mask themselves as cancer and so much cancer that is hiding in with other things. When a limited amount of testing is done because of the assumption that everything that shows on an exray is cancer the patien loses valueable time to treat whatever his or her disease might be. Once it is positive that it is cancer it should be treated with the same outlook as anything else is. How many times do you hear someone say "he has diabetes he is going to die no matter what we do" or he has heart problems he is going to die no matter what we do'.? That attitude kills!!! I believe too that when doctors make mistakes and cost a person their life that they should be held accountable. I have learned the hard way that the medical boards that are supposed to investigate complaints do such a poor job that not one doctor is ever really held accountable. I filed spacific complaints about the way Johnny was treated. His rights were ignored and abused. He was given medication that caused him to stop breathing and tho he had requested to be put on a resperator if need be they ignored his wishes and continued to drug him with both Morphine and Vicodin saying it was to calm him down because he was restless. Restless because he was already over drugged. The investigation report that I got was really a dousy. They never even mentioned his name. They went to the hospital and asked THEM questions and examined their protocol for patient's rights and how they administered medications along with several other things. They made no attemp to answer one of my charges or to try to get to the truth about Johnny's death. Why because of the diagnosis of lung cancer. They all have that same attitude. To them they can't see wasting time or repremanding a doctor that kills someone when that person had lung cancer. As far as they are concerned when a person has lung cancer they lose their right to fight for their life and to be treated the same as anyone else. That has to stop. Until it does the stigma of lung cancer will just keep growing and more and more people will die at the hands of the very people that they trust their lives to. The medical boards who investigate reports of rights abuse and wrongfull death need to learn that it is their job to do more than cover the asses of the doctors and hospitals. In my research I learned two important facts. Up until just recently if a doctor had a claim filed against him or if he was cited for wrong doing he could tell them that he did not want it make available to the pubic and it was not disclosed! Even if he was found guilty he could keep anyone from finding out. Now that is changed but it happens so seldom and it is so hard to get that information that most never find it. Another thing I have learned is that both insurance companies and Medicare pay bonuses to doctors who save money by not ordering too many tests to diagnose!! That is outrageous!!!! We pay for that. It is not charity it is our lives and our money and they have no right to do that. Now I say lets give the government some of these issues to look at. It a person has lung cancer they have it. How they got it or why should not come into the issue of how they are treated. Everyone has the rights to be treated like humans not a DISEASE!!!!!! Lillian

I agree one hundred percent that we need to act. The problem I have found is getting anyone who can do something to listen. My question is does anyone ever address the issue of attitude toward lung cancer other than the smoking issue? I believe that the negative attitude of both the public and the ones in the medical profession are responsible for a lot of cancer deaths. I know for sure that they give medications that can and do kill because they believe that a peson with lung cancer is a lost cause right from the beginning. That is so wrong. I witnessed what that negative attitude can do to a person and how the doctors respond. If you have read any of my posts you will know that the man I was going to marry died and it is my belief that he died because he had lung cancer. It was not the disease that killed him but that attitude that a peson with lung cancer is always going to die of it. I have written Johnny's story and many on this board and others have read it. again I say anyone who wants to read it email me at lild@peoplepc.com and I will send it to you. I can not get the medical board in Washington to even look at the real issues I have. They just say how they checked their proceedures and how they question the people there and they find nothing wrong with how they do things. I have told them that Johnny was a person and not a number and that I have spacific questions that need answers but still no response. Once they hear lung cancer they give the same response. He had lung cancer he was going to die anyway. I even had a lawyer tell me that she hears the same story everyday. She said if you take it to court the doctor just has to say "he had cancer and was going to die any way" and they can get away with anything. That is an excuse to poison someone with drugs then get away with it. I believe that is a major issue and needs to be addressed. If it happened once and I know it did then it will keep happening. It is time for it to stop. Is there any room in what you have to say for that issue? I can't go anywhere but I can and do write a lot and I want someone to be aware. Let me know if you can help me and if there is anything I can do with my writing that will help. Lillian

Janet First of all let me say that I am sorry that you have reason for being here. The truth is that you do have reason and no amount of anger is going to change that. Anger and fear are two of things that are a part of the process of cancer. Anger can do two things it can either make you quit and complain about the ones who make you angry or it can make you take action. I think that tho you say you have given up you are far from that. If you had you would not be on this site that contains the words"Survivers and Change" in it's title. From what you say it sounds like you are a woman who has had to fight and fight hard to get to where you are now. You did that to survive. I know where you are comming from because my whole life has been an almost day to day battle to have the things I need just to live. I am here because I chose to make that fight the same as you have. You are now facing the fight of your life because it is your life. But there is one thing that you need to start seeing. It is not just your life! It is the life of your children and everyone who loves you. I lost both my mother and the man I have loved for most of my life to lung cancer. I would trade everything I own even the clothes that I am wearing if it would bring either of them back to me. Money is a very cold partner. It can not hold you when you are cold or comfort you when you cry. If you would ask your children or your family what they would rather have you or money I have no doubt that they would say you. If you don't fight for your life you are letting them down. The people on this board are all survivers. I don't care if it is just one month or 18 years they have surviuved and they didn't get here by quiting. They got here because they were willing to fight to live. It takes a lot more courage to fight than it does to quit. Their loved ones still have them. They don't have to cry themselves to sleep everynight. They don't have to question themselves everyday wondering if they could have done something to change the situation and have the one they love still with them. I know how that is. I live with that every day of my life. My man didn't get the chance to fight. I am so angry too but I use that anger to try to make changes in the system that failed him. You can do that too. It will not change until we make it change. Attitude makes the biggest difference and I don't mean just the attitude of the patient. I mean the attitude of the public in general. The same attitude that you are displaying saying that cancer is a killer and unbeatable. That attitude kills not just the cancer. You say that you will trust God and you don't want to hear anything else that anyone says telling you that maybe God has plans for you but you need to take part in them. I trust God and I have had times in the last year when I was so angry with him but I know it was not him but that very negative attitude that took my Johnny from me. If doctors were not intended to have the knowledge to treat cancer they would not have it. I firmly believe in the old saying "God helps them who help themselves". As far as statistics go those are just numbers not individual people. I have heard a lot of frightening statistics but none as low as the ones you said 2%. I think you will find that is an error. At any rate statistics are made to be changed. When people start thinking of cancer as a disease that tho hard to beat it can be curable I believe those statistics will change drastically for the better. So I say to you show that courage that it took to raise two children alone. Prove the statistics wrong. Don't be selfish. Think of your children and other loved ones. Don't leave them with a hole in their hearts for the rest of their lives. Do you want them to think that you loved them so little that you would not fight to live so you can raise them? Give yourself and them a chance. Fight to live and then fight the system. You have two very big fights ahead of you if you chose to do that but believe me it will be worth the effort. God Bless and guide you. When the anger dies and the fear that causes it subsides a little,read the posts found here. They will help and inspire you. Let us all work to make cancer just another word not a word that spreads such terror! Lillian

Today, tomorrow and the next day will be the aniversary of the last great days that Johnny and I had together before the anxiety started. It is just so hard to face these days alone. I want to go back and know then what I know now but I can't and it hurts so much. It is just so hard to keep up the fight for justice for Johnny when I have to do it alone. He was my strength and my inspiration. Without him it just seems so hopeless. His kids are just off living their lives even tho they have the same questions that I do. They will do nothing to help. I feel like all I can find is brick walls stopping me from doing what needs to be done. I'm sorry to be so emotional but life has played some dirty tricks on all of us and by reading here I know that you all understand that. I have one question that some of you can answer. Please tell me some of the proceedures used for your diagnosis. Did any of you come up against the problem of too little done to diagnose and them assuming just by your exrays? These things eat at me night and day. I just know that not enough was done to diagnose Johnny and I feel that for some reason that is what really led to his death. I appreciate your help and I will tell you that the support you show here for one another and me is really wonderfull. Keep up the good work and I know that someday God will bless us all with the answers needed to kick this stuff in the butt. Lillian

I tried to change my email address back to the old one in the profiles but it keeps telling me that my password does not match. Can't figure that one out. It is the same as it was. They couldn't mean my email password could they?

Hi everyone The new internet system did not work well so I canceled. I will keep the old address lild@peoplepc.com as well as lilliansplace@yahoo.com Sorry for any problems this causes. Lillian

Hi Shamrock I see you have people from Hospice so that means that your mother-in-law is getting her things from them. Ask them about a Hoya Lift. I work in an assisted living facility but the skilled area use them all of the time to get people out of bed. I agree that if she is able to sit up for a while she should be gotten up. There are easy ways to do it without breaking yourselves into. As for the depends that can be a touchy subject. First of all let me say that when they put one on Johnny he hated it. I do believe that women tolerate them much better. Where I work we have a number of people on depends or if they are mobile they were pull ups during the day and depends at night. None of them seem to have a problem with them. In fact some of them are relieved to have them. Most of our people who do wear them are women but some men do too. Most of them however have mental problems so they don't think to object. Just ask her if she wouldn't like to try them just at night time. You might be surprised by her answer! As far as sleeping at night that is a special subject. A person with lung cancer is usually short of breath. Things look a lot different at night all alone than they do in the day light. She is probably afraid of dying alone during the night. A sleeping pill may work but it does slow down breathing and if she is short of breath all ready that will only add to her fear. She will be afraid that she will sleep so hard that if she stops breathing she won't wake up. Even if she has come to terms with the fact that she is dying it is still a fearful thing to have to deal with. I hope these suggestions help you in some way. You are in my prayers everynight as is everyone on this planet who has to fight with this terrible disease. There is none worse and the only one that compares is Alzhiemers. Just be thankful that you are not alone in your fight. And remember God is always with you. Lillian

Thank you Cindy for your reply. That is very smart to take notes. There is one more thing I would like to add that may help too. Call your states Department of Health and Social Services. Ask them for a number where you can call and find out about any complaints filed against the doctor you are considering. They should give you a list of those complaints if there are any. The list should contain all claims filed against the doctor and the outcome. Even if none were ever acted on or if the were acted on and not fault found they will give you a pretty good picture. I have learned that their is so much red tape involved in filing a claim that most people would just let it go rather than go through the time and frustration envolved. If a complaint has been filed more than likely the insident took place. It is just very hard to prove anything against a doctor and most cases are not even investigated let alone fault found. Ask if they will send you a printout of the charges that were made against him. I have a list of claims filed and the dates against Jump. Today I am going to call and ask for a print out. Hopefuly I will get one. I want to see exactly how similar those claims are to mine. As if February he had 6 claims filed against him sense 1986. They were 1Verbal abuse(the same as I claimed) 2.not listed 3sanitary conditions. 4.unreasonable risk(again the same as I claimed) 5. not listed because it was never investigated. 6. sexual misconduct. I have little doubt that the claims were all true. It is just so hard to get the medical board to actually do something. In Washington the number to call is360-236-4815. Good luck I hope this helps someone. Lillian

If you or a loved one have just been diagnosed I have some infomation or I should say advice for you. Please read the following paper I have written. If anyone has anything to add that I have forgotten please feel free to do so. Lillian Questions you should ask and things you should know if you have cancer. 1. If it is lung cancer what kind is it small cell or none small cell? 2. If non small cell which one do I have ? (there are 3 kinds) 3. What stage is it? 4. What treatment do you propose? 5. What other doctors will be working with you? 6.What other treatments are available not just with you? 7. Can it be treated with radiation or chemotherapy? If they say no ask questions 8. Do you have the means to treat the cancer with radiation or chemotherapy? 9. What is the size of my turmor or tumors if there are more how many? 10. How much say do I have in my treatment? 11.What were the results of the tumor marker test? Ask for numbers. 12. What do you plan to do for the issue of anxiety? 13. What is the median 5 year survival rate for this kind of cancer? 14. What is the median 5 year survival rate among your patients? 15. What is the median 1 year survival rate for this kind of cancer? 16. What is the median 1 year survival rate among your patients? 17. Do you mind if I get a second openion? If they refuse to answer your questions or do not want you to get a second openion it is time to see someone else. If your doctor does not take the time to answer your questions and can not be open with you you will not trust him. Trust is important just like hope in your survival and comfort. Things you should know that I wish I had known in time. 1.Always take notes. Either in writing or with a small tape recorder. the recorder is best because you have their voices and you can make sure the time and date are on it. If you feel that you can not do that have someone with you who can. You should always have someone with you if possible anyway. Record the date. The name of the doctor and his anwers to your questions. Keep track of blood test and other test results encluding the numbers in the blood tests. Have names of all medications given, the reason for giving them and who gave them. If you go to the hospital for any reason this is very important. Make sure you have the name of anyone that has any thing to do with your treatment. Also the time of day that it is done. Make your notes openly. There is less chance that anything will be done not to your advantage if people know that you have their name. 2. Know your patient's rights and demand them. If you have any concern about one of your rights seek legal advice either from the patient advocate or someone else. Especially if you feel one of your rights has been denied or abused. 3. No one has the right to force you to sign a DNR. That is your choice and your right to refuse or not. If you are harassed about it report it as soon as possible. Hopefully you will have a witness tho in most cases if someone is going to do that they will make sure that you don't. If you do choose to sign a DNR make it spacific. State exactly what circumstances you would want it used and what circumstances you would not want it used. 4. When ever you are given a medication make sure you know what it is and what it is for. Never let anyone give you pain medication for anxiety. It only makes it worse. Most are addictive and have terrible side effects. 5. Morphine is great for pain. People in pain can take very large doses without harm. If there is no pain morphine can and does kill. No one can force you to take any medication that you do not want. 6. When given a medication get all of the information that you can find. If possible get on the web and look it up. Don't only read but study the information. Make sure you learn about side effects and the signs of overdose as well as interactions and warnings about other medications. If you take something and it feels like something is wrong it probably is. Don't let anyone tell you otherwise. You will know. 7. Get on the web and research the kind of cancer you have. Knowledge can be a powerfull tool. Join message boards. Learn about the treatments that others have tried and how they have worked. There is no other place to get so much information. 8. Never let anyone take hope away from you. It is the most valuable thing you have to fight cancer. If a doctor starts treating you like the disease or like a, dead man walking, find another doctor. That one can do no more for you. 9 one final thing get copies of ALL test results!!!

Hi I just want to tell you that I am somewhat familiar with the Taxol/Carbplatin chemo. Johnny recieved one treatment every week for 6 weeks. He had very little in the way of side effects. He was fatigued on the second day after treatment and he lost about 2/3 of his hair. Other than that he did quite well. In fact he gained not only the weight that he had lost but more. A total of thirty pounds. No stomache problems at all. The first CAT scan showed a 50% reduction in the size of the nodules. When he started the second series is when he had a problem. We were told that what he experienced (high temperature and low blood pressure) were a reaction to the Carboplantin. It is plantinum based and the plantinum is toxic. We were told that eventually everyone has a reaction to it but most very late in treatment. Johnny just reacted sooner than most. I have often wondered why instead of just continuing with Taxol alone they did not add Cistplatin. We were told that tho it was platinum based too it is better tolerated than Carboplatin. I know that you are asking about the chemo but something you said sent up a red flag for me because of what happened to Johnny. If your mother is subject to anxiety attacks don't want to get help for that. Anxiety is very common in lung cancer as is shortness of breath. One feeds on the other and sets up a vicious circle. Tho she may seem alright now I warn you that sooner or later she will have a problem with anxiety. Many of the other drugs she will use will cause anxiety and also the chemo. Just be very carefull about any anxiety medication she takes. Some of them are terrible. Ativan can cause a reaction called Paradoxical CNS Stemulation. That is a terrible thing and very upsetting to the person as well as their loved ones. I know I saw what it can do. Read all of the information you can about those drugs. Xanax worked good for Johnny along with Paxil until it was changed for no appeartant reason. Xanax as well as Ativan are Benzodiapines. Ativan is the stronger. Just be infomed about any medication. IF she takes something and feels like something is wrong it probably is. Take action right away. God bless you and your mom. You see I not only lost my Johnny to lung cancer I lost my mom to it in 1985. There was much less done in those days for a person diagnosed. Pray for a cure and remember to keep a positive attitude no matter how bad it looks now. I have been told that attitude is 90% of the battle. As for statistics look at it this way. If it says 14 out of 100 will live 5 years that means 7 out of 50 or 3and 1/2 out of 25 or 1 out of every 11. Now that is something that many can live with. Your mom will be one of those 11. Just keep believing that and work toward it. Don't let anyone take hope away from you. Fight to show that lung cancer is a disease not a person!!! Lillian

I will try to answer a few of your questions. Yes I have filed with the medical board. They dismissed the charge against the doctor who harrased him about the DNR saying that what he did did not meet their criteria for verbal abuse. They never even considered that he refused to treat Johnny because he would not sign a DNR so he did not get the antidote to the Ativan. Also sending him to another hospital agains his will and endangering him further were not addressed. The claim I filed against the nursing home was dismissed because when they visited this past March (not November when Johnny was there) they could find no evidence of the violations taking place at that time. They ruled this dispite the fact that another claim that was almost the same found fault. They left a man with chest pains for 6 days and never notified his doctor. In the letter saying no action was taken because of lack of evidence they admitted that they found no record of when the nurse called Johnny's doctor. Still they made that decision. The first hospital claim was denied because they said that a doctor could give a medication that a patient was alergic to even after he refused it if the doctor decided that the bennitits could ourweight the risks. Apearantly too in his records they lied saying that his conditon improved because of being given the drug. They also said that because the doctors decided that not resusitating him would be a bad medical decision they could refuse to treat him when he would not sign a DNR. That is just an example of their ruling. There is so much more and everyone of them I can find in the patient's bill of rights showing that they had no right to do those things and that it was illegal. Soon after Johnny died I called an lawyer. She told me that she hears the same story everyday but all a doctor has to do is argue that a person with cancer was going to die anyway and they can get away with anything they do. I do not have his medical records only his son can get those and even tho I offered to pay for them he never acted on it. I believe it is because he feels guilty about approving the morphine even tho he was lied to to get his approval. I also believe it is because he has guilt about never being there to help us. I doubt that I can file a law suit because we were not married. I do not expect his sons to because of what that lawyer said. They see no money in it so they will not waste their time or effort. That is my story for now. I continue to write and give new information to the medical board. I am planning on sending copies of the claims that I have filed along with the medical boards replies and all of the information I have that proves their decisions wrong to members of congress. Maybe in an election year they might be interested. I am still wating for the outcome of the claim against the second hospital but I really do not expect it to be any different than the others. After all the medical board is made up of doctors and nurses. They protect their own in any way they can. Lillian

This is mainly addressed to everyone who has read Johnny's story but I want others to see it too. Sense Johnny's death I have searched for answers and tonight I found the big one. The day before Johnny died there was a blood gas test taken. His son was told that his blood gases were so bad that they didn't expect him to make it through the night. The number the doctor gave his son was PaCo2 58. They used that information to get his son to give permission to give him morphine. I have believed from the day he died that it was the medication that they gave him that killed him. Now I see that I am right but I'm not sure what to do with the information. In a medical book at the nurses station where I work I read an article on respiratoy failure. It gave the treatment that should be used and that is where I found my information. I knew that the narcotics should have been stopped and the oxygen lowered from my reasearch. What I saw tonight was that when the PaCo2 reaches 60 or above then a machanical means of ventilation should be used. They had to know that he didn't even need a ventilator. They just kept drugging him with both morphine and vicodan when they should have stopped all of the narcotics. His blood gases were at 58 not even to 60 and they knew that they could save him. I don't know why they decided that he had to die that day but I have my suspecions. Right now I know that he could have been saved and that is what counts. How do I go about getting someone to look into this and acrually do something about it? There has to be a way. I can't stand by and see them do it to anyone else!! I have already learned how inept the medical board in Washington is. I know I can't trust them to do an honest investigation. Does anyone have any ideas on how I can go about getting this out into the open and making them be held accountalbe? Thanks for your input. Lillian

I need help. I don't know how to change my email addrss so I can be notified when I have a reply to one of my posts. Any help will be appreciated. Lillian

Hi everyone For anyone who wishes to email me either to recieve Johnny's story or to respond to any of my other posts I have a new email address it is lillianduplantis@sbcglobal.net I am also still using lilliansplace@yahoo.com Thanks hoping to hear from more of you soon. Lillian

In my research of the drugs that Johnny was given I have found a lot of what I believe to be usefull information. I search out the drugs he was given and find the sites and information that will be most valuable to anyone who is being treated for cancer. As you know if you try to find information on anything you will usually find thousands of sites that contain the word tho only a few have real information. I found out while researching morphine that many sites are just junkies reporting on their highs from useing it for their own purposes. Following is some of the informatiion that I have found. Someday soon I am planning on having a web sit that will give as much information as I can find along with stories of hope and those of heartbreak. I think everyone who is confronted with cancer needs to know all that they can and it should be easy for them to access. Maybe this information can help some of you. God Bless you all. Keep fighting and supporting each other. Lillianmorphine information Contraindications: Hypersensitivity to morphine; respiratory insufficiency or depression; severe CNS depression; attack of bronchial asthma; heart failure secondary to chronic lung disease; cardiac arrhythmias; increased intracranial or cerebrospinal pressure; head injuries; brain tumor; acute alcoholism; delirium tremens; convulsive disorders; after biliary tract surgery; suspected surgical abdomen; surgical anastomosis; concomitantly with MAO inhibitors or within 14 days of such treatment. is contraindicated in any patient who has or is suspected of having a paralytic ileus Respiratory depression is the chief hazard of all morphine preparations. Respiratory depression occurs most frequently in the elderly and debilitated patients as well as in those suffering from conditions accompanied by hypoxia or hypercapnia when even moderate therapeutic doses may dangerously decrease pulmonary ventilation. Interaction with Other Central-Nervous-System Depressants--Morphine should be used with caution and in reduced dosage in patients who are concurrently receiving other narcotic analgesics, general anesthetics, phenothiazines, other tranquilizers, sedative-hypnotics, tricyclic antidepressants, and other CNS depressants (including alcohol). Respiratory depression, hypotension, and profound sedation or coma may result. Adverse Reactions: Major hazards of morphine as of other narcotic analgesics, are respiratory depression. To a lesser degree, circulatory depression, respiratory arrest, shock, and cardiac arrest have occurred. Other adverse reactions include the following: Central Nervous System--Euphoria, dysphoria, weakness, headache, insomnia, agitation, disorientation, and visual disturbances. Gastrointestinal--Dry mouth, anorexia, constipation, and biliary tract spasm. Cardiovascular--Flushing of the face, bradycardia, palpitation, faintness and syncope. Allergic--Pruritus, urticaria, other skin rashes, edema, and rarely hemorrhagic urticaria. Treatment of the most frequent adverse reactions: Overdosage: Manifested by respiratory depression, somnolence progressing to stupor or coma, skeletal muscle flaccidity, cold and clammy skin, constricted pupils, and sometimes bradycardia and hypotension. The pure opioid antagonist, naloxone, is a specific antidote against respiratory depression which results from opioid overdose. Usually 0.4 to 2.0mg is administered intravenously and the patient is carefully monitored. Before taking this medication, tell your doctor if you have ·kidney disease, ·liver disease, ·asthma, ·urinary retention, ·an enlarged prostate, ·hypothyroidism, ·seizures or epilepsy, ·gallbladder disease, ·a head injury, or ·Addison's disease. • You may not be able to take morphine, or you may require a lower dose or special monitoring during treatment if you have any of the conditions If you are younger than 18 years of age or older than 60 years of age, you may be more likely to experience side effects from morphine therapy. Use extra caution. What happens if I overdose? • Seek emergency medical attention. • Symptoms of a morphine overdose include slow breathing, seizures, dizziness, weakness, loss of consciousness, coma, confusion, tiredness, cold and clammy skin, and small pupils.Also avoid sleeping pills, tranquilizers, sedatives, and antihistamines except under the supervision of your doctor. These medications also may cause dangerous sedation. • If you experience any of the following serious side effects, stop taking morphine and seek emergency medical attention: ·an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives); ·slow, weak breathing; ·seizures; ·cold, clammy skin; ·severe weakness or dizziness; or ·unconsciousness.• The most serious interactions affecting morphine are with those drugs that also cause sedation. The following drugs may lead to dangerous sedation if taken with morphine: ·antihistamines such as brompheniramine (Dimetane, Bromfed, others), diphenhydramine (Benadryl, Nytol, Compoz, others), chlorpheniramine (Chlor-Trimeton, Teldrin, others), and others; ·tricyclic antidepressants, such as amitriptyline (Elavil) and doxepin (Sinequan), and serotonin reuptake inhibitors such as fluoxetine (Prozac), sertraline (Zoloft), and paroxetine (Paxil); ·other commonly used antidepressants, including amoxapine (Asendin), clomipramine (Anafranil), desipramine (Norpramin), imipramine (Tofranil), nortriptyline (Pamelor), and protriptyline (Vivactil); ·anticholinergics such as belladonna (Donnatal), clidinium (Quarzan), dicyclomine (Bentyl, Antispas), hyoscyamine (Levsin, Anaspaz), ipratropium (Atrovent), propantheline (Pro-Banthine), and scopolamine (Transderm-Scop); ·phenothiazines such as chlorpromazine (Thorazine), fluphenazine (Prolixin), thioridazine (Mellaril), and prochlorperazine (Compazine); and ·tranquilizers and sedatives such as phenobarbital (Solfoton, Luminal), amobarbital (Amytal), secobarbital (Seconal), alprazolam (Xanax), diazepam (Valium), lorazepam (Ativan), flurazepam (Prosom), and temazepam (Restoril). • Do not take any of the drugs listed above without the approval of your doctor. The warnings for morphine are the same for all narcotics only it is stronger. it suppresses the breathing reflex. It can cause resptary failure and coma and death. It is to be used for pain or cough but it warns about giving to people with inpared breathing or elderly or people with serious illness. It says they should be started at a low dose and only increased if the pain increases and then the patient should be monitored for possible serious side effects. The symptoms of overdose are: decreased urination restlessness cold clammy skin slower breathing coma death everything that happened to Johnny that last day and those b------s had to know that.!!! ETHIOLOGY & PATHOGENESIS: The PaCO2 level is controlled by the rate of alveolar ventilation, while CO2 production varies with the percentage of calories (utilized for energy metabolism) that are derived from carbohydrate; any increase in PaCO2 (due to increased CO2 production) is rapidly handled by increased alveolar ventilation. Thus, respiratory acidosis is the result of alveolar hypoventilation leading to pulmonary CO2 retention. It occurs with (1) depression of the central respiratory center caused by drugs, anesthesia, neurologic disease, abnormal sensitivity to CO2 (e.g., cardiopulmonary obesity syndrome); (2) abnormalities of the chest bellows (e.g., poliomyelitis, myasthenia gravis, Guillain-BarrŽ syndrome, crush injuries of the thorax); (3) severe reduction of alveolar surface area for gas exchange (conditions characterized by ventilation/perfusion imbalance; e.g., chronic obstructive pulmonary disease [emphysema, chronic bronchitis], severe pneumonia, pulmonary edema, asthma, or pneumothorax); and (4) laryngeal or tracheal obstruction. Neurologic changes with CO2 retention may depend upon the development of CSF acidosis or intracellular acidosis in the brain. Hypoxemia and metabolic alkalosis frequently accompany respiratory acidosis and may contribute to the neurologic abnormalities. SYMPTOMS, SIGNS, & DIAGNOSIS: The most characteristic change is metabolic encephalopathy with headache and drowsiness progressing to stupor and coma. It usually develops slowly with advancing respiratory failure, but abrupt, full-blown encephalopathy may be precipitated by sedatives, pulmonary infection, or O2 enrichment of inspired air in patients with advanced respiratory insufficiency. Asterixis and multifocal myoclonus are generally present; in some patients, dilation of retinal venules and papilledema result from increased intracranial pressure. The encephalopathy may be reversible if hypoxic brain damage has not occurred. TREATMENT: The treatment must improve the underlying pulmonary disturbance. Severe respiratory failure with marked hypoxemia often requires mechanically assisted ventilation. Sedative drugs (narcotics, hypnotics) should be avoided except as necessary to facilitate mechanical ventilation. Although most patients with chronic CO2 retention and hypoxia tolerate modest O2 enrichment of inspired air, some patients respond with a significant fall in respiratory minute volume and further acute elevation of the PaCO2. Presumably, such patients have adapted to chronic hypercapnia (CO2 narcosis) so that their major respiratory stimulus is hypoxemia. Therefore the lowest O2 concentration required to elevate the PaCO2 to acceptable levels (> 50 mm Hg) should be given. This can be accomplished with O2 administration by a mask, beginning with a 24% O2 concentration. The PaCO2 should be carefully monitored and, if it rises to dangerous levels (> 50 to 55 mm Hg), mechanical ventilation must be considered. Acute Respiratory Failure . Acute Respiratory Failure: or ARF - This disorder occurs when the lungs no longer meet the body's metabolic needs. It isn't easily defined because it has many causes and variable clinical presentation. Cause: Acute respiratory failure may develop in patients with Chronic obstruction pulmonary disease (COPD ) from any condition that increases the work of breathing and decreases the respiratory drive. Conditions includes: respiratory tract infection, bronchospasm, or accumulating secretions secondary t cough suppression. Other causes of ARF in COPD include: Central nervous system (CNS) depression - head trauma or injudicious use of sedatives, narcotics, tranquilizers, or oxygen Cardiovascular disorders - myocardial infarction (MI), congestive heart failure (CHF), or pulmonary emboli Airway irritants - smoke or fumes Endocrine and metabolic disorders - myxedema or metabolic alkalosis Thoracic abnormalities - chest trauma, pneumothorax, or thoracic or abdominal surgery Symptoms: In COPD patients with ARF: hypoxemia (deficient oxygenation of the blood) and acidemia affect all body organs Altered respirations. Rate may be increased, decreased, or normal; respirations may be shallow, deep, or alternate between the two. Cyanosis may or may not be present. Auscultation of the chest may reveal crackles, rhonchi, wheezes, or diminished breath sounds Altered mentation. The patient show evidence of restlessness, confusion, loss of concentration, irritability, tremulousness, diminished tendon reflexes, and papilledema Cardiac dysrhythmias. Tachycardia (rapid heart rate), with increased cardiac output and mildly elevated blood pressure secondary to adrenal release of catecholamine, occurs early in response to low PaO2 (oxygen level). With myocardial hypoxia, dysrhythmias may develop. Pulmonary hypertension also occurs Treatment: Antibiotic for infection Bronchodilators Steroids In COPD patients, ARF is an emergency that requires cautious oxygen therapy In significant respiratory acidosis persists, mechanical ventilation through an endotracheal or a tracheostomy tube may be necessary High - frequency ventilation may be used if the patient doesn't respond to conventional mechanical ventilation The effects of narcotics on respiratory drive are well known and recognized. The concept of Dyspnoea as a " pain equivalent" regulated by endogenous opiates is supported the observation that naloxone, an opiate antagonist, restores blunted ventilated load responses in COPD patients10. It has been suggested by Woodcock and associates11 that narcotics may improve dyspnoea by decreasing oxygen consumption out of proportion to minute ventilation. Although acute administration of dihydrocodeine reduces dyspnoea by up to 20% long-term opiate treatment has variable effects on breathlessness and is associated with significant side effects notably increases in PCO2, which probably outweigh the potential benefits. Symptomatic drug treatment of breathlessness using benzodiazpines or systematic opiates is of a very limited value and associated with unacceptable adverse effects. Recently there has been much interest in the use of nebulized morphine for the relief of dyspnoea in COPD12 and also in patients with malignant disease. It is simple and bloodless, delivers morphine directly into the pulmonary blood stream avoiding hepatic first pass metabolism and is reported to result in rapid analgesia13 presenting with dyspnoea. It may be particularly suitable for patients unable to take morphine by mouth who wish to avoid injections. It is also believed that nebulized morphine can relieve breathlessness associated with cancer and chronic chest diseases by a direct action on lung receptors13. One placebo-controlled trial showed a small increase in exercise endurance in patients with chronic airflow obstruction12, while another study has not14. More recently, Masood and colleagues15 used nebulized morphine in patients with severe chronic airflow obstruction and noticed that their studies did not support the hypothesis that nebulized morphine relieves breathlessness and altered sensation of breathlessness. The observed improvements in dyspnoea with these agents are modest at best and probably due to nonspecific sedation by these drugs. The concomitant reduction in minute ventilation is a potentially serious adverse effect in patients with marginal pulmonary function and the use of such drugs cannot be routinely recommended in patients with severe COPD. From nurses manual on drugs Morphine: Use with caution if at all in geriatric or debilitated clients with pulmonary disease. Side effects: light headedness,dizziness, sedation, mental clouding, lethargy, impaired mental and physical performance, anxiety, fear, dysphoria, psychological dependence, mood changes, respiratory depression, I rregular and periodic breathing, urinary retention. Practice cough and deep breathing exercises and incentive spirometry to decrease risk of atelectasis Another nurses manual on drugs: Morphine: Assessment and drug effects Before administering morphine, note respiratory rate and depth and rhythm and size of pupils. Respirations of 12 per minute or below and misosis are signso of toxicity withhold drug and report to physician. Diffenentiate among restlessness as a sign of pain and the need for medication, restlessness associated with hypoxia, and restlessness caused by morphine induced CNS stemulation ( a paradoxical reaction that is particularly common in women and elderly patients. Monitor vital signs at regular intervals.Morphine induced respiratory depression may occur even with the smallest dose, and increases progressively. Monitor In and Out ratio and pattern, Report oliguria or urinary retention, morphine may dull perception of bladder stemuli. Therefore encourage the patient to void at least every 4 hours. Palpatate lower abdomen to detect dladder distention. Adverse side effects: puritus, rash,uticaria, edema, paradoxical CNS stemulation (restlessness, tremor, delirium, insomnia) dysuria, oliguria Drug interactions: CNS depressants, sedatives, barbituates, alcohol, Benzadiapines, and tricylic antidepressants. Cautious use in toxic psycosis, emphysema and dibilitated patients. Myoclonus: a brief, sudden, shock-like muscle contraction, mediated by an electrical nerve discharge originating in the central nervous system Drug-induced myoclonus: about 80 causal agents (toxins and drugs) including: Tricyclic antidepressants e.g. amitriptyline SSRIs e.g. Prozac Penicillin (Morphine ) the jerks that John had that started to get so sever while on morphine Hydromorphone (an opiate related to morphine) Phenytoin Midazolam Pseudoephedrine (available in some over-the-counter common cold preparations) Treatment: Clonazepam(benzodiazepine), valproate (anticonvulsant); some reports of baclofen, fluoxetine (an SSRI antidepressant), propanolol (antihypertensive) and 5-hydroxytryptophan (5-HT) being of help. Acute Abdominal Conditions: Narcotics may interfere with the diagnosis and treatment of these conditions. If you suspect a serious abdominal condition, seek medical treatment, and allow the attending medical personnel to manage your pain control. Alcohol or Drug Addiction: There is an increased risk of chemical dependence with these medications, particularly for addiction prone individuals. If an addiction is untreated, combining alcohol or drugs with these medications poses a greatly increased risk for organ damage and dangerous or fatal overdose. Allergies: An allergy to a narcotic medication in the past would indicate that you should seek another type of treatment. Allergies to NSAIDs or aspirin indicate that you should not use narcotic medications combined with these drugs. Mention any other food or drug allergies you may have experienced, to be sure that your doctor can prescribe an appropriate medication. Asthma or Chronic Lung Disease: These medications may increase the risk of respiratory depression, and should be used with caution. If you have ever had an asthmatic reaction to aspirin, or any NSAID, you should not use narcotic preparations containing them for pain control. You are at increased risk of bronchospasm or an anaphylactic reaction. Do not take opiates during an asthma attack, this could cause dangerous respiratory depression. Bowel Disorder: Narcotics may worsen symptoms of constipation. Brain Disease or Head Injury: Narcotic medications may increase pressure in the cerebral and spinal fluid, possibly interfering with accurate diagnosis or treatment. Dependence: Physical dependence and withdrawal are known risks for these drugs. While many medications can cause withdrawal symptoms when use is stopped, opiates have a higher risk of actual addiction. Addiction should be distinguished from physical dependence, as it is a psychological need to seek out a drug even when there is no compelling health need, to the point of decreasing the quality of life. Addiction is rarely an issue in individuals who require pain control, but the risk is there, and narcotic use should be considered carefully. Emotional Problems: You are at an increased risk of side effects and drug interactions with prescription treatments for your condition. Gallbladder Disease: You are at an increased risk for adverse side effects, and should only take these medications with the consent of your physician. Heart Disease: You may be at an increased risk for adverse side effects. Intracranial Lesion: Do not use narcotic analgesics. Kidney Disease: These medications may stress damaged kidneys. Ask your doctor if this treatment is right for you, or if there are dosing guidelines that would make it safe. Drink 6-8 glasses of water daily to reduce strain on the kidneys. Liver Disease: These medications may cause liver damage, and stress damaged livers. Speak to your doctor about appropriate dosage guidelines, or other available pain control methods. Do not combine alcohol use with your treatment. Medical Emergencies: Inform medical personnel if you have taken these medications recently, as they may interfere with diagnosis of certain conditions or interact with some treatments. Do not take these medications if you need to seek out emergency services; instead allow the ambulance or hospital staff to manage your pain control. Overdose: This may be indicated by cold or clammy skin, exaggerated CNS depression (extreme weakness, dizziness, stupor, or difficulty breathing), paradoxical restlessness, pinpoint puils, seizure, or slowed heartbeat. If you suspect an overdose of these medications, seek emergency medical treatment immediately. To avoid, keep medication out of reach of children, follow maximum dosing instructions, and do not mix with alcohol or other drugs which may cause drowsiness. Pregnancy: Certain narcotics appear to increase the risk of birth defects. There is a risk of fetal dependence and withdrawal symptoms if the medications are used during pregnancy. Respiratory depression and muscle weakness may also occur in newborns whose mothers used opiates during pregnancy. While clinical trials have not been conducted with each of these medications in pregnancy, they are generally considered too risky to prescribe to pregnant women and are not recommended for nursing mothers. Seizures: Some of these medications may increase the risk of seizure. Discuss this with your prescribing physician if you have a history of seizure or are taking medication that makes seizure more likely. Surgery: Inform your doctor or dentist beforehand that you use these medications, and follow any instructions they may give you. Thyroid Problems: Narcotic medications should be prescribed with caution and be attended by medical supervision. Urogenital Tract Problems: Narcotics may worsen these conditions, particularly difficult urination, and should only be undertaken with medical supervision. This also applies to individuals with enlarged prostrates. Withdrawal: Long-term and frequent use of these medications may result in withdrawal symptoms if treatment is stopped abruptly. The severity of symptoms is usually dependent on dosage and length of use. They may include aches, agitation, decreased appetite, diarrhea, fever, gooseflesh, insomnia, large pupils, nausea or vomiting, rapid heartbeat, shaking, stomach cramping, sweating, weakness, or yawning. Your physician may be able to reduce the severity of this condition by stepping you off your medication gradually, or by other methods. Moderate, periodic use of these medications will not generally cause withdrawal symptoms. Interactions Narcotics may interact with other medications you may be taking. The following drugs are especially likely to interact with these treatments, but you should always check the labels of each individual medication you use to decrease the likelihood of undesirable side effects. If medications increase each other's effects, or lead to undesirable drug buildups in the body, your doctor may recommend adjusting the dosages of one of the medications if it seems appropriate to use both treatments. Medications which increase central nervous system depression should not generally be taken with narcotics, or within the time frame that they are active in the body. If your doctor prescribes other medications that have CNS depressant effects, be sure to work out a medication schedule that won't leave you oversedated or increase your risk for overdose. If you are taking a narcotic preparation which is combined with acetaminophen, aspirin, or ibuprofen, you will need to look into potential drug interactions and warnings for those drugs as well. Alcohol - Narcotics and alcohol can accelerate central nervous system depression. Avoid mixing the two, as this could result in liver damage, or a dangerous and potentially fatal overdose. Antihistamines like Tavist or Benadryl may cause oversedation. Benzodiazepines (a class of antidepressants, anti-panic agents, and muscle relaxants) such as Ativan (lorazepam) <../ativan-lorazepam.html>, Valium (diazepam) <../valium-side-effects.html>, Halcion (triazolam) <../triazolam-halcion.html>, Restoril (temazepam) <../restoril-temazepam.html>, Librium (chlordiazepoxide) <../librium-side-effects.html>, Xanax (alprazolam) <../online-prescription-xanax.html>, Tranxene-SD (clorazepate), Paxipam (halazepam), ProSom (estazolam), Klonopin (clonazepam) <../klonopin-side-effects.html>, and others, may increase CNS depression in combination with narcotics. Benzodiazepines may make narcotic pain medication less effective, and may produce this effect for up to a full day depending on how long-acting the particular medication is. Desyrel (trazodone) <../trazodone.html> - Risk of additive CNS depression. MAO inhibitors - Narcotics must not be mixed with MAO (monoamine oxidase) inhibitors such as the antidepressants Nardil, Marplan, or Parnate. They should not be used within 2 weeks of stopping these medications. Narcotic pain medications should not be mixed with each other. Brands like Tylenol with Codeine, Demerol (meperidine), Buprenex (buprenorphine), Darvon (propoxyphene), Dilaudid (hydromorphone), MS Contin or Kadian (morphine), nalbuphine, OxyContin (oxycodone), Stadol (butorphanol), Talwin compound (pentazocine), Vicodin (hydrocodone, acetaminophen), or Vicoprofen (hydrocodone, ibuprofen) should not be mixed in treatment. Rifadin (Rifampin) - May decrease the effectiveness of methadone, triggering withdrawal symptoms in individuals using it for addiction treatment. Sedatives like Fioricet <../buy-fioricet-online.html> (butalbital, acetaminophen, and caffeine), Fiorinal <../fiorinal-online.html> (butalbital, aspirin, and caffeine), Phenobarbitol, Seconal, or other barbiturates. Sleep medication like Ambien (zolpidem) <../ambien-side-effects.html>, Sonata (zaleplon) <../sonata-sleeping-pill.html>, or over the counter sleeping pills should be used with narcotics only as, and if, advised by your doctor. Skeletal muscle relaxants - such as Flexeril (cyclobenzaprine) <../flexeril-side-effects.html>, Norflex (orphenadrine) <../norflex-orphenadrine.html>, Skelaxin (metaxalone) <../skelaxin-metaxalone.html>, Soma (carisoprodol) <../soma-carisoprodol.html>, or Robaxin (methocarbamol) <../robaxin-methocarbamol.html> may increase respiratory depression when mixed with narcotics. Street drugs of any type must never be mixed with opiates as this could result in a fatal overdose. Tegretol (carbamazepine) - May build up to toxic levels when used with narcotics. Tranquilizers such as Haldol (haloperidol), Mellaril (thioridazine), or Thorazine (chlorpromazine) may cause oversedation. Trexan (naltrexone) - Causes narcotic pain medication to be ineffective. Tricyclic antidepressants such as Elavil (amitriptyline) <../elavil-side-effects.html>, Asendin (amoxapine), Anafranil (clomipramine), Pertofrane or Norpramin (desipramine), Sinequan (doxepin) <../sinequan-side-effects.html>, Tofranil (imipramine), Aventyl or Pamelor (nortriptyline <../aventyl-nortriptyline.html>), Vivactil (protriptyline), and Surmontil (trimipramine), may increase the central nervous system suppressant effects from either the antidepressant, or the narcotic. Ultram (tramadol) <../ultram-tramadol.html> - This medication works partially by activating opiate receptors, and increases central nervous system depression. Do not combine with narcotics. Zidovudine (AZT, Retrovir) - Narcotic pain medication increases blood levels of this drug, potentially making side effects more severe.

Hello everyone. My name is Lillian and I am afraid that I was so anxious to post my message that I did not follow protocal. Johnny and I were sweethearts 44 years ago. I was but 15 at the time and he was 11 years older than I was. One day a family member told him to get lost. I had no idea why he disappeared. His return was a year and a half later just days before I married someone else. Our lives went their seperate ways until the end of 2000 when I had a very realistic dream that sent me in search of him. My marriage of 41 years was never what a marriage is supposed to be. When I went searching for Johhny my marriage was at it's end. When I divorced in the beginning of last year I moved from Louisiana to California to be near what is left of my family, brother, nieces and nephews. It was hard to leave my children and grandchildren behind but I knew it was time to start a life that had some promise for myself. I needed to feel like a person again. Johnny and I continued to talk on the phone and I knew that he had not been well for months. In May 2002 he learned that he might have lung cancer. On Father's Day June 16th while at the emergency room he called me. Everyone was telling him that he had lung cancer tho no real tesing had been done. I dropped everything and went to Washington to be with him and take care of him. The first few days were very hard because he ended up in the hospital with pneumonia. While there he was diagonsed with stage IV NSCLC tho still the testing left much to be desired. He was started on Carboplantin and Taxol on July 17th. His attitude was the best I have ever seen. He was determined that he would beat the cancer and become a surviver. We had 3 of the happiest months of either of our lives. He improved daily and gained back all of the weight that he had lost plus more, a total of 30 pounds. He just breezed through the Chemo with no serious problems. He had everyone convenced that he would beat the cancer, everyone that is but the doctors and nurses at chemo. A remark from a nurse at chemo started a chain reaction that led to his death on December 2,2002 just 5 short months after being diagosed. Our life together was cut short. So many things went wrong that it just didn't make any sense. When doctors start to tell you lies about a person's condition and refuse to answer basic questions it causes you to start questioning everything they do. Because of anxiety and panic attacks that his doctor refused to address he ended up in the hospital where he was given drugs that he was alergic to and then never monitored. His death was a direct result of that. I have been working sense his death to find not only justice for him but a way to prevent what happened to him from ever happening again. I have written his whole story as many of you know. I have had several requests just from this message board and am always willing to send the story to anyone who wants to read it. I think that through his story many will be able to see what the pitfalls are to watch for. I will say that on this site, that is much more active than any of the others I am on, I see so much positive attitude and support for oneanother. I wish to God everyday that I would have had that at the time I needed it. Johnny's sons were not helpful to us. We were in the fight alone and being a novice I had no idea what to watch for. I believe had I known more Johnny would still be with me and I would not have this hole in my heart that never stops bleeding. Sense his death I have become an advocate for patien's rights and for change in the way cancer is looked at. I want it to be seen as a chronic disease that is treated like anyother with the outlook that it can be beaten and will be. I believe that the attitude of the medical profession is so negative where cancer is concerned that many things are done to cancer patients that doctors would never even dream of doing to anyone else. That has to stop. Until that attitude is changed I vow on my Johnny's name that I will work tirelessly to see that change. It was that name that made me find this site. While looking for message boards to post my message I saw this one. The words that caught my attention were,Survival and Change. That is what my work is all about. Thank you all for being here. It is so wonderful to see the support that you give oneanother. Thanks too for the respone that I have gotten so far to Johnny's story and my other posts. You are all very special people and I know that together someday we can make those changes in attitude that are so important to survival. Anyone else still interested in reading Johnny's story email me at lild@peoplepc.com and I will be happy to send it to you. I warn it is very long but I think worth the time it takes to read. My prayers with all of you. Remember Faith, love , hope, attitude and prayer are the strongest things we have to fight this terrible disease. Don't let anyone take those away from you. Thanks for everything. Lillian

Thank you for your response Laura All of this took place last year. We never found another place and got the answers we sought. Johnny was doing so well that we thought that he was getting the best treatment. It was only when the nurse at chemo told him that he would be on chemo for the rest of his life that the problems started. He developed anxiety and panic attacks and his doctor would not address that issue. As time passed I learned that his ego whould not allow his word to be questioned. They refused to give him anything for the anxiety and panic attacks then let him use Vicodin to try to help himself. That just made the situation worse. No one would help us. I was caring for him all alone and it just overwhelmed me. It was a full time job just dealing with the anxiety. He ended up checking into the hospital to try to get help. The things they did to him there and th en later in a nursing home let to another trip to the hospital on November 29th 2002. There he was given a large dose of Ativan after telling them that he would not take it because he was alergic to it. It caused a condition that I have learned sense is called Paradoxican CNS stemulation. In other words he went on a real trip. The doctor at the hospital harrased him trying to force him to sign a DNR. When he refused to sign one the so called doctor refused to treat hm then shipped him off to another hospital after they made me leave(telling me that he had pneumonia and had to get there to be treated and they would not be able to get him in the ambulance with me there). Sense we were not married and I wanted him to get the treatment I was stupid enough to leave him in their hands. I just found out yesterday that to get him in the ambulance they gave him morphine. Once at the other hospital he was never tested for toxins from medications. Instead the continued to give him both morphine and Vicodin saying it was to calm him down. As a result he went into a coma and when I asked I was told it was not a coma but a restfull sleep and they refused to take his vital signs. Later because I was there and saw what was going on the rushed him to ICU. They did nothing to save him that was required because he was full code. All they did was bag him. On December 2,2002 at 5am he died with me standing there hopelessly watching. I live with the nightmare of what happened to him every minute of my life. I have sought and am still seeking answers. Sense his death I have learned that his treatment was suspect right from the beginning. HIs diagnosis was made from that biopsy of just one lymph node from his neck and an inconclusive CAT scan that was 2 months old by then. He did so well on chemo that he gained 30 pounds and the nodules were reduced by 50% in 6 weeks. Not one time were we told what kind of NSCLC he was supposed to have. We were told so many lies that I have started to believe that it was because he was misdiagnosed and they didn't want us to find out. Either the staff at the doctors office, two hospitals and a nursing home were completely incompitent or they delberately chose for him to die. The lies we were told make me suspect the later. Because of his death I have become an advocate for patients rights and have gathered so much information on medications and cancer treatments. I had an appointment to take him to Cancer Treatment and Wellness Center in Seattle the following week. They made sure that he never got there. I have written out his whole story hoping that enough people will read it that what they did will never happen again. I am also working to find a way to have them expossed publicly. I will not rest until that day comes. I grieve for Johnny every day and the injustice that he recieved. That kind of thing has to stop and I want to be a major part in stopping it. If you or anyone would like to read Johnny's story just email me at lild@people pc.com be sure to send me your email address. It is very long and detailed but it clearly shows how unrealistic cancer is seen by the public and the medical profession and what that can lead to. I continue to pray for a cure of both the cancer and attitude believing that a change in attitude will go far to make cancer a chronic disease that can be managed like any other. Everyone of you are in my prayers daily. I only ask that you be carefull and demand help if you get into the kind of situation that I did. Had I had more knowledge I know beyond a doubt that my Johnny would still be alive. God bless all of you. Lillian

Has anyone heard of having a diagnosis from a biopsy of just one lymph node from the neck? I have read so many things and they all say that to get a diagnosis from a lymph node takes from one to three days. Yet we were given a diagnosis and stage after just one hour. Johnny was still in recovery from the surgery. He never had a lung biopsy. Is that unusual or not. I find that making that kind of diagnosis should have more to go on than a biopsy of just that one lymph node and a CAT scan that was inconclusive don't you? Also we were never told what kind of NSCLC he had. I read and all of you know the kind. We were never told any of that. I feel like his diagnosis was not really done properly and there could have been an error. I keep reading where even the PET scans make errors. He had been exposed to mold for over 7 years that brings up a lot of questions about fungus to the lung but no one ever did anything to find out if he had that. I am suspecious of everything they did with him after the way he died. Thanks for any information. Lillian