CancerCompass message board discussion started by Dh123195 on 4/22/2006 http://www.cancercompass.com/message-board/message/all,5153,0.htm Fri, 10 Oct 2008 00:00:00 GMT Fri, 10 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My sister was diagnosed in January with bile duct cancer that could not be operated on because it had matasticized to the other major organs and was intertwined with major bood vessels. She is only 47. The bipassed the mass so the bile can drain directly into the intestines. She also has a external drain for back up purposes. She has lost almost 50lbs from January and the pain is becoming quite bad. Because of her bilirubin number being too high she is unable to get conventional chemo yet. Her doctor has given her a synthetic morphine pill to help with pain and medicine to help her appetite but when she eats everything tastes bad. While the pain pills help she cannot sleep. If anyone know anything about this please let me know. I feel she is nearing the end but the doctor has not come out and said this yet. I am frustated by the lack of honest discussion. My sister will not speak about her illness to me or the rest of my family so we are feeling very frustrated on all fronts. I take her to all her doctor appointments and speak to her doctor on the phone but I feel we have not really be given the down and dirty regarding her situation. Most of what I have learned has been on my own. Dh123195 Sat, 22 Apr 2006 00:00:00 GMT Have you and your family considered seeking a second opinion? My aunt was just recently diagnosed with Bile Duct cancer. The first doctor she saw said there was not much hope and not much they can do. He said surgery was not an option because the cancer is on the side where the liver functions. the cancer has also spread to her pancreas. My family was not happy with the hopeless news and sought a second opinion. They took my aunt to Roswell Cancer Center in Buffalo NY. It is a very roknown cancer center that does a lot of research. There we found hope. However, this cancer is not cureable but they have been doing reasearch and studies for over the past 10 years and are at the point of introducing their treatment into the market within the next couple of months. It has given patients with bile duct cancer a few more years to live and more comfort through those years. I am not sure where you live but I would consider talking your sister into visiting this cancer center. My aunt was given 6 mos to 2 years to live with the prognosis from the first doctor, and now she has a chance to live even a few more comfortable years with this treatment. Please consider. Blondie82 Mon, 22 May 2006 00:00:00 GMT Amy, my husband has had a whipple(positive margin-lymph),Xeloda,radiation. He finished treatments mid Feb.(markers were 500) and his markers were 5000 by mid March. We were not told until the end of April. By then they were 43000.Now he has a tumor in his abdomen and lost over 20lbs because he couldn't hold food down. Took 3 weeks to get a stent in his stomach to push the tumor over and hopefully(I am typing this in the hospital after procedure!) he will be able to eat.They couldn't start chemo until he could eat. They were going to use Gemicitibine? and Tarceva. Haven't talked with oncol about new plan. I was wondering what types of drugs/treatment Roswell Cancer Center was using on your Aunt. I received info from Cancer Treatment Centers of America in Tulsa and was wondering if anyone was pleased with their treatment plans. Treating the whole body seams like a more logical aproach, but was wondering about the earlier message board about them. Any input is helpful as he hasn't had the best care yet. Nevada Fri, 26 May 2006 00:00:00 GMT Well, my husband never got any treatment while in the hospital. The stent didn't work and the Dr's did not do anything to help him. He Passed away June 20. He was extremely lucky not to have pain until the last day. I had to fight the hopistal to let him go home with home care, which only was four days, then he was so sick he was back in the hospital, moved to hospice and lasted an hour......This was the most unrespected treatment of a patient by Dr's. Keeping him in the hopsital and not offering any treatment,never saying anything,his own oncol wouldn't even come to the hospital, had to see someone on duty and since he was on I.V. nutrition,wouldn't give him chemo, so he had no choice but to sit and die, but still wouldn't talk about it or accept it. What a waste of a very strong man,loving husband. I wish dearly he had gone to UCLA for his original whipple and had never gone to the NCT for his chemo. I know he would still be battling now if he had and I would still have the love of my life with me. The lousy treatments out there are robbing lives,all I can say is keep looking for a Dr that cares and is honest with you,ask questions(not that it helped us!)find a GOOD homeopath to work with your oncol(I found ours toooo late) I wish well to anyone with cancer, it is an awfull disease Nevada Sat, 23 Sep 2006 00:00:00 GMT Hello,As I read your message it is like I am reading what is happening to my father. If you can please write back. Thanks,   Keeping Faith Wed, 20 Dec 2006 00:00:00 GMT