CancerCompass message board discussion started by Robbie R. on 8/31/2003 http://www.cancercompass.com/message-board/message/all,993,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Dear Kristy: I seem to be in the same boat you are, but in the opposite. I am 73 and have four children, and they are reeling. I am in the position now of gathering information and have more test to do next week to determine if this has spread to any other part of my body. I am looking into (on the computer) Cancer Centers of America. Does anyone know about this center? Does insurance cover the treatment? Have you heard of anyone surviving through their treatment? I was encouraged by Peggy B's report concerning her son, but I am a bit older. Also, August Z, you note was also encouraging. My Dr. didn't seem to have any hope for any thing when he gave me the news. He did say I probably would not be a candidate for surgery due to long time smoking. I feel so much alone. I don't even want to tell my husband the bad news I have discovered in my research, so I am seeking something to tell him that will keep him from worrying so much. Thanks for being there. I will look forward to hearing from everyone that can give me something else to hang on to right now. Thanks, Robbie R. Robbie R. Sun, 31 Aug 2003 00:00:00 GMT Hi, I am so sorry to hear your news. I have not had cancer but I have lost two people that I love to that disease. My mother in 1985 when not as much was available and the man I have loved most of my life on December 2,2002. His death caused me to go in search for answers and to make a difference. I truly believe that attitude makes all of the difference in the world. Not just your attitude but especially those who treat you. Already I would say your doctor sounds like a loser where attitude is concerned. The only thing I know about CTCA is that they offer hope. They will treat a person not just the disease. I had my man an appointment with them but we never made it there. The attitude of his doctors saw to that. The post 'Information to help and a story to make you aware" is my post. Please read it and if you want to read John's story let me know. I will be happy to send it to you. It teaches some valuable lessons. His story is long and will take a long time to both send and read if you request it. I am more than willing to take the time. I could cut it down but I really believe that it is important for people to know the whole story. Then you and everyone else may be better prepared to protect yourselves from the attitude and indifference that so many times accompanies a diagnosis of cancer. God Bless and hold you so you can get through anything that lies ahead. Remember you have 3 very important tools to fight your battle with. They are LOVE HOPE and FAITH with them you stand a good chance of winning your battle. Without them you lose too much. Lillian Lillian D. Sun, 31 Aug 2003 00:00:00 GMT Hi Lillian, I am now expierencing the attitude from the medical profession that you are talking about! Want so badly to use some alternative methods that I have hope in but cannot get the doctors to talk about it, even tho it might save me a lot of grief for me as well as my family. If you can send me a copy of John's story, would like very much to read it, and who knows, maybe become involved in a effort to change the attitudes of medical professionals some! Anyway, let me know what I need to do to receive the story! God Bless and Good Luck, David David D. Mon, 01 Sep 2003 00:00:00 GMT David, All you need to do is send me your email address. I will be more than happy to send you Johnny's story. Most who hear it cannot believe how terrible his treatment was. The medical treatment at first did wonders for him. That along with his attitude could possibly have sent him into a very long remission. It has been 9 months tomorrow sense he died and the more I remember the more I know that it was not cancer that killed him but attitude. The attitude of the medical profession toward cancer and in some cases their own power. Do not expect any of your doctors to discuss alternative treatments with you. They won't. I have heard that they are not allowed to but I seriously doubt that. You are in the right place to learn. The web is a great tool but there is so much out that is just garbage. Go onto this and other message boards. Read other people's stories. You will see stories of despair and heartbreak but too you will see stories of hope and survival. The people that you will meet in these places are the ones who have the most information. They stand to gain nothing by sharing with you other than a sense of giving back to others. They are the ones who have been there. You will see much about the alternative treatments and have a chance to assess them by what you read. Many say they are using these things behind their doctor's backs and the doctor cannot understand why they are doing so well. You sound like you have a fighting attitude. Keep it and don't let anyone take it away from you. If a doctor starts talking like you are a dead man walking get rid of him and find another. Read Johnny's story and you will see why I say that and why I am so intent on changing the attitude toward cancer. The very best of luck. My prayers are with you and your family. Just remember always the best tools you have are FAITH HOPE LOVE AND ATTITUDE!!!!!! Lillian Lillian D. Mon, 01 Sep 2003 00:00:00 GMT Thanks Lillian! Just had a PET scan today and will get the resultsin 2 days! My diagnosis is Stage II Cancer at the base of the tongue next to the throat! Have been doing gobs of research and found several things that I would like to try instead of Cut, Burn and Poison but none of the Doctors that I have seen will talk about it and one or two are downright hostile to it! Thanks again for your reply! David David D. Tue, 02 Sep 2003 00:00:00 GMT Thanks again Lillian! I am excitedly anticipating recieving your information about Johns expierence with the medical profession! Maybe, just maybe, in some way, it will help me on my journey to beat this evil thing called cancer! God Bless and Good Luck David David D. Wed, 03 Sep 2003 00:00:00 GMT Hey David! .... We hope all is better for you! ;-) We, Dennis and I, have something more than eeriously similar to you .... Not meaning to be offensive to you (or ANYONE else), we are indeed a Gay couple, but one that is established of 15 years, with 3 adult kids and 4 wonderful grandchildren ..... Dennis has Laryngeal cancer and so much, thankfully, I have been able to move his initial radio/chemo treatments up by nearly 2 months, even more than our Docs were able to .... maybe it's due to the breeze beneath my late Mom's wings .... she told Dennis that he's her "acquired son" several years back .... and just today we were told by the radio-doc that he is VERY pleased with the results thusfar of that gawdawful poisoning of his system to SLAY this alien. Thank the great Spirit, we are doing well as we go into week 4, but am now looking to expand our cooking library to include more garlic, shallots and as many other anti-oxidants as there may be into who knows how many different recipes we have on hand ...... I sure do hope for your wellness and we of course extend our thoughts ... our BEST ones ... on to you. Don Xuiote has always been my guide!!!!! TO THE WINDMILLS! Billy D. Billy D. Wed, 03 Sep 2003 00:00:00 GMT My cousin has just been told she has cancer, and has been given only 6-8 weeks to live, or 9-14 months with chemo treatment. She is told she has it in her breast, hips, stomach, pelvis & under her arm.she has no hope left. I want so much to give her hope and I have tried to tell her not to give up. But she seems to have her mind made up she will not survive this. She was told the type of cancer she has is spreading triple about every 28 days. I can't stand the thought of her not being here anymore. I love her so much she has been there for me our whole life. She is just like a sister to me and she treats everybody well. She would do any thing for anybody. She is a great person and I want so much to keep her around, so we can grow old together. Plus she has grandbabies who love her so much and need her more then anything and also a grandchild on the way soon. She is terrified of the thought of not watching them grow, and my heart is hurting for her. Can you send me the Johnny story? Please I will read it and I'm looking for help on giving her hope. I just watched my father pass away from cancer in 99 and it was the worst experience I have ever seen. It was inhumane and I pray every minute of the day this does not happen to her also. Thank you...Glenda Roughty Mon, 21 Jun 2004 00:00:00 GMT Robbie, I just lost my husband at age 44. He had Stage IV lung cancer. He also had a terrible time with his doctors. We were ran around to all kinds of doctors and did all kinds of test and no one was telling us anything and no chemo or radiation was suggested. I finally took it upon myself to take him to Cancer Treatment Center of American in Tulsa. They did more in the first week he was there, than had been done in 3 months with his other doctors. They were wonderful and there are cancer survivors that come out of Tulsa. It's worth the trip to have them do some testing and they are coming up with new technics everyday. There are even new cancer drugs (Iressa) that are helping people everyday. My advice would be don't let grass grow under your feet. Take it upon yourself to seek other avenues for treatment. Some of these doctors, just don't want to give you any help and I think it's a tragedy that these onocologist can't suggest alternative treatments and let you make the decisions on what treatment is right for you. We had a doctor that was very cold and uncaring about any treatment. He called us in on Christmas Eve to tell us the news because he was leaving town for the holidays. It's sad, but some doctors have a cold heart. Just make the call to CTCA and talk to a nurse and see if it's right for you. They do not only the medical part of it, but also the spiritual & nutritional part as well. You met the greatest people there and everyone is there for the same purpose and are helping each other. The only reason my husband did not stay at CTCA was because I think we waited too long to get to CTCA and it had already spread to his adrenal glands and then to his brain. I had to bring him back to Missouri to seek a doctor here, due to the distance, our daughter and other commitments. He got great treatment from the doctors here as well. It just was too late and he fought with all he had and lost to the ugly monster. Research every site you can find and look into the Cancer Treatment Center of America. Just make the phone call or go on the website and send an email, that's how I decided. May God Bless You and Keep you. I will pray for you and your family. Connie S. Connie Thu, 08 Jul 2004 00:00:00 GMT My brother-in-law was just diagnosed last night with cancer. Lymphona to be exact. They are still running tests to determine whether it's Hodgin's or non-Hodgkin's. We have already contacted CTCA and they are contacting the hospital arranging plane tickets, car, guest housing, etc. My family has been touched by so much tragedy lately. Their are 4 of us, three girls and a boy. I am the oldest, and due to fact we lost our father in 1984 and our mother in 2001, I don't know how much more we can take My sister whose husband was diagnosed, was recently diagnosed with MS and 4 tumors on the brain causing her to go blind. She has recovered most of her sight due to the shots, but last week she started to lose the use of legs. She was in the hospital when they diagnosed him yesterday and made them release her to go to the hospital he was admitted to. My other sister has cystic fybrosis, burrcitis, bronciectesis, and was in a horrible car crash a year ago. But when I read your story, I was compelled to reply and would love to read John's story. Any support and info is very helpful and comforting at this time. Thank you, Jonette Welder Wed, 28 Jul 2004 00:00:00 GMT Dear Lillian, I have just been diagnosed with Stage IV Metastatic Breast Cancer. It has spread to my spine, ribs and pelvis. I am very interested in reading John's story, if possible. Thank you so much Lillian. You're a lifesaver! Lauren Lauren P. Sun, 03 Oct 2004 00:00:00 GMT I have a story to tell you too. My precious husband of 10 months has just been diagnosed with squamus cell carcinoma of the neck and tonsils. He has just finished the first week of radiation. Has 5 more to go. We elected not to do the chemo part. One specialist called our home 3 times last week trying to make us reconsider and add chemo to an already painful treatment. We are trusting God through this and feel that we will have a wonderful life and many more years together. We have a beautiful story of our love. He is 52 yrs. and I am 51 yrs. We were each others first sweethearts in 8th grade. We found each other again after very painful marriages. I have much more to tell, if you are interested. Hope to hear from you, and please send the story. I am very interested. Thanks, Darla K. Marlya53 Fri, 15 Oct 2004 00:00:00 GMT My Mom, a young 75 just DX stage 4 and like you, she was long-term smoker. She is very informed on alternative meds and is considering chemo that the drs seem to promote. She was on oxygen at first but has shown 02 level improvement so only uses as needed. She is already shopping for a wig in prep for the chemo but we realize that life is in God's hands and are unsure of the next step to take with treatment. We live in Mass. and enjoy a close family so we cannot imagine living without her, however quality of life for her is what is most important. Please remember my Mom in your prayers as we remember you as well. God bless. Momsson Fri, 03 Dec 2004 00:00:00 GMT My Mom was just dx stage 4 ovarian CA. Can you forward Johnnys story to me? At present her attitude is good and she believes in alternative med however the drs are pushing chemo so she may compromise and do both. We need a miracle right now it seems and appreciate any information and prayers you can send her way. We will include Johnny and the many others in our conversations with God and wish you the best. God bless. Momsson Fri, 03 Dec 2004 00:00:00 GMT Hi Guys: My Mom recently diagnosed and we are still in shock as she remains active at 75. She believes in alternative meds although drs push chemo treatments so she may combine the two. We have asked for copy of Johnny's story from the originator and welcome any information you may have. We will include you in our prayers as we give thanks for each day that we can all share together. Our family has always been poor but we are extremely close and I can't imagine life without my Mom. Momsson Fri, 03 Dec 2004 00:00:00 GMT Hello Darla, my name is Ron B, I to had squamus cell carcinoma of my right tonsil and lymphnodes. Had tumor, right tonsil,lymphnodes and part of tongue which is the part in my throat removed. Had surgery and a month later started 6 weeks of radiation, which I worked through intil the 5th week, I have left alot out but wanted to let you know I feel what your husband is going through. It has been a year and a half that I have been clean, so far so good! I would like to know how your husband is doing and if there is anything I can do to help in letting you know what I went through and see if we have been throught the same thing. Hope to hear from you, Ron B My prayers are with you! Ronald B. Tue, 15 Mar 2005 00:00:00 GMT Hi Ron, I do have a few questions for you, too. How old are you and when did you go through this? My husband's healing is taking far longer than we ever imagined. He had to quit working after 3 weeks of radiation. He lost his taste buds and saliva very early, suffered lots of throat drainage, lost his voice, and fought nausea a lot and still does. Treatment ended for him Dec. 1, 2004. He has since regained a voice, but much lower tone than before. (He is a singer and this bothers him). The doctor says his throat is healing and still looks very swollen. He ended up having maximum radiation/7 weeks, total. He did not do chemo, and we are glad now. He still has a feeding tube and can't eat solid food. He does manage to drink 7up, Sprite, etc, during the day. We both feel that since he had the lump in his neck removed, 9 teeth removed, both tonsils/etc, and then was cooked in that area,for so long, that he is healed. We now just pray for signs of recovery each day. He still doesn't have much energy and tries to be more active, each day. He has had the feeding tube much longer than anticipated. My husband is soon to be 53 years old, and only smoked a little, years ago. At the moment, he can taste very little, still has no saliva, has difficulty swallowing, nausea/off & on, spits up thick mucos during the day and sometimes at night. Thanks for the message, and we will look forward to hearing from you again. His next Pet Scan is this month. So far, the CT Scan was clear. Darla K. Marlya53 Tue, 15 Mar 2005 00:00:00 GMT Hi Darla, It was Jan of 2003 at the age of 53 that I found out I had cancer. I had never smoked or a real drinker. In Nov of 2002 I had swallow my normal vitamins and felt like one had gotten caught in my throat, swallow more water still wouldn't go down, so I felt in time it would go away, Jan morning brushing my teeth when I coughed up a quarter inch piece something, took it to my doctor and a week later found out I had a cancer call SCC, set up an appt. with a nose and throat doctor and later had full body scan, found no cancer anywhere else, just in the throat area. March of 2003 went for throat surgery, was told they might have to break my jaw to get to the cancer if they couldn't through my mouth or the incision witch would be on my right side, luckly the were able to get to it without breaking it. During that surgery I also had a feeding tube put in, only because they had really scraped and cleaned my throat and small portion of my tongue(throat portion removed), so I couldn't have any food or liquid down my throat for 5 months, I rested for a month or so and then started radiation 6 weeks. During this time physically I felt good pretty good, nausea only happened when I might have taken medication which didn't agree with me. My energy was always up until the later part of my radiation, then depression set in which I didn't even notice until my wife had a long talk with me, my doctor prescribed zoloft, in about two weeks I snapped right out of it, that was a great feeling! Its been a year and a half, I still only have about 50% of my taste back, doctor says might not ever get it back totally, Steak is the one food that I can taste as well as I did before so thats a plus for me, lol, chocolate is out cannot taste it at all, ice cream out also, disapponted but just glad I can taste what I can. I have about 50% of my saliva back, did have a saliva gland removed also. Swallowing is still a factor for me, I need to follow anything I eat such as solid food with a sip of water because of not enough silvia and it is hard to swallow almost choke sometimes.I also spit mucos up in the mornings when I get up and during the day, its like it buils up in your throat and you just have to get rid of it. Even after a year and a half doctor says my throat is still swelled from the radiation. I think what helped me through this ordeal was that I had been going to the gym for the past two years three days a week was in good shape, have a positive attitude, family support and the one thing I knew was that I was going to beat this terrible thing called cancer! I never dwell on it, it is in the back of my mind, but I have more important things to think about like the rest of my life with my wife and family! Everyone is different in how this thing called cancer effects a persons body and mind. I had made up my mind that I was going to get through this, when I did I was going to New York, after being in your house for 8 months I had to get out, so did my wife, don't know what I would have done with out her, I'm sure your doing the same for your husband and I'm proud of you! I hope I helped out a little and I know things will turn out great for your husband, just takes time, my prayer are with you, Ron Ronald B. Tue, 15 Mar 2005 00:00:00 GMT Hi Lillian, My fiancee was just diagnosed with advanced liver cancer---doctors are giving no hope--even went so far as to say "let nature takes its course". A terrible attitude to take with someone who badly needs a word of hope and encouragement. We are researching everything including alternative treatments. I would appreciate it if you would sens John's story---maybe it will help give us some strength on this very difficult journey. Thank you and God Bless, Dee Tracy Fri, 25 Mar 2005 00:00:00 GMT Hello Lillian, Could you please send me John's story as my mom is getting the same attitude from her doctors...they are offering no hope whatsoever. She has colon cancer which has spread to her liver. I would really appreciate it. Thank you! Karmen Karmen Tue, 23 Aug 2005 00:00:00 GMT Hello, Within the last 6 weeks I have been diagnosed wit sqamish carcinoma of at the base of my tongue,and glottis. I have never had a prolongued serious illness and am frightened out of my wits. The CTC has recommended radiation and the preliminary prep has begun. I am 70 and suffer from life-time clinical depression and this cancer thing, make me wonder if it is worth it to extend my depressive condition or just call it a day rather than be worried for the next 10 years about treatment failur and returning cancer. I'm totally regretting that you went through this and I hope I have made sense in this nessage. I'm floundering and feel alone John_ b Sun, 11 Sep 2005 00:00:00 GMT I would love to read His story. Thanks Kallen Kallen Thu, 20 Oct 2005 00:00:00 GMT Hello Lillian: Can you please send me a copy of the story... I am new to the board and I am looking for any and every bit of information that I can get. My 70 year old mother has just been diagnosed with Metastatic Carcinoma and after a petscan yesterday...there was no primary found. They said there was so many spots in her liver that there were too many to count. She is starting Chemotherapy next week: Taxol and Carboplaint coctail once every 3 weeks for 9 weeks, then they will do another CT scan to view the results. She is a very spiritual person and has a tremendous belief in God. My mother has suffered her whole life with Asthma and Emphysema and was recently diagnosed with Spinal Stenosis with means her spine is deteriorating..but through this she is still positive...beautiful spirit and an all around great person. The blood tests however, makes no sense to me. They said that her blood tests came back strong and really good but they detected markers in her blood that are related to Ovarian Cancer...she has a full hysterectomy over 20 years ago. My parents just lost everything to hurricane Katrina and we felt so helpless. They are staying at my brothers house and she went to another doctor in another town to check op a hernia in her stomach and that is where the doctor noticed that her liver had spots...My mother averages 10 doctors visits a month and has had every test known to man and about 1 surgery a year and I am floored as to why this was never detected. I am trying to be as strong as she is about this, but it is so hard living with the unknown. I live in Alaska and my whole family is down south so I really feel disconnected with everything. I am just needing one story of hope from someone who has beat the odds with the same liver cancer that has lived past the 6 month to a year prognosis...this can give me some hope that she can come through this. Thank you for letting me ramble on...everyone on here seems to have great strength and it is nice to know that there are people who we can lean on during this fight through life! God bless each and everyone of you... Equineprincess Sun, 23 Oct 2005 00:00:00 GMT