CancerCompass message board discussion started by Discussion on 1/14/2005 http://www.cancercompass.com/message-board/message/all,1481,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My name is Cindy and my husband had a full whipple procedure and liver transplant done at the same time by Dr. Justin Nguygen, St. Lukes, Mayo Hospital, Jacksonville, Florida, September 23, 2004. What a miracle by the entire staff at both Rochester, Mayo and Jacksonville. My husband was diagnosed with PSC about 4 years ago, two years he was diagnosed with bile duct cancer. He went through numerous stent placements, chemotherapy, radiation, brachytherapy and numerous blood transfusions at the Mayo Clinic in Rochester, Minnesota. In December 2003, I noticed that he was becoming jaundice. He became chilled and had a temperature of 103. I took him to a local ER hospital and they prescribed Cipro. Well, I knew that he had more than the flu, so the next day I took him to Mayo. That's when Dr. Gores started the protocol of chemo and radiation for one month. On February 14, 200, they did surgery to see if the cancer had spread, it had not. We were put on the transplant list. He also had PSC of the liver. We waited six months and finally after he had lost 60 pounds, Dr. Gores made mention that he would get a liver faster if he went to the Mayo Clinic in Jacksonville. We immediately made the necessary arrangements and were gone within the week. When we got to Jacksonville, he had to redo all tests. His MELD score was 27, within three weeks we got the call. They never expected to have to do the whipple procedure, but once inside they had no choice. They removed 1/3 of his stomach, most of the small intestine and the head of the pancreas. He also received the biggest gift of life, a perfect liver. He was in the hospital for almost 6 weeks for infections and a few minor complications. It has now been almost 4 months since the operation. Needless to say it's a struggle. He doesn't feel like eating and when he does he usually feels like vomiting and often does. He is not down to his lowest weight (6'2", 139 lbs.). He started out at 220. We have been to every nutritionist, he's on antidepressants, but I still can't get him motivated. I signed him up for physical therapy, I got a stationary bike and he still has no energy. I know it will take time after such a huge operation, but how long do I wait? He seems to get worse instead of better. Needless to say, I am completely frustrated. What can I do? Please help. Thanks for listening. The care he received at both Mayo hospitals was fantastic. Discussion Fri, 14 Jan 2005 00:00:00 GMT Cindy, I was diagnosed with cholangiocarcinoma 2 years ago and underwent a liver resection where they removed part of my liver. I underwent chemo and radiation therapy about a month afterwards. Though my procedure was not as extreme as your husband's, I went through the same problems with food that he is now facing. I didn't want to eat anything and had lost nearly 15 pounds, which is a lot for someone 5 feet tall. I would cry as I made myself eat something, 3 times a day. I drank a lot of water to wash everything down. I would tell myself with each bite that this was a matter of simple of survival---for myself and my family. If he can take small amounts of nourishment at first, and gradually add on, it is easier. If your husband can keep in mind the gift of that perfect liver and remember that he is now the caretaker of it, he may see he owes it to that person whose liver he accepted to give it care and nourishment---kind of like adopting a child. I realize he is in a depressed state and reasoning doesn't always work. Good luck and may God bless. L W. Sat, 15 Jan 2005 00:00:00 GMT Hi Cindy, My father was just diagnosed with cholangiocarcinoma at Duke University. He was sent to Mayo for futher treatment and follow up. He has been accepted in their transplant program. I would like any first hand information as to what he should expect. He does not have PSC. He is 69--I think their oldest patient. He is very healthy except for his liver. He was fine until December 8. Prior to that he had some unusual scans, but no symptoms. He is in the executive health program at Duke. He has more had more scans and comprehensive workups than the typical 69 year old. As we were told most people don't get a clue about this until it is too late. They were just beginning to follow up on the abnormalities found just this summer, but before Dad could go back for follow up he developed severe jaudice and received his diagnosis. How old is your husband? Any first hand advice would be greatly appreciated. We know this is a very rare cancer and that successful transplant is the only hope for a cure. Dad's age seems to be the only draw back. We are looking for anyone else willing to share their story. we are praying that successfull treatment at dad's age will be an encouragement to others out there. I pray that God will bring complete healing to your husband, that he strength will increase as well as his appetite. Felicia Feliciar Mon, 07 Feb 2005 00:00:00 GMT My Husband was diagnosed with bile duct Dec 2004 the cancer had matastasizeded to his 3rd and 5th vertabrae,his vetrabrae had collasped. He has had a bad back and pain in his left leg since Feb 04 and was going for physio for six months, they thought it was sciatia. We knew that there was something else wrong but the feedback was that it can take time to heal. He became jaundiced in August 04 and I knew then we were dealing with more than Sciatic. I called our family Doctor and it took until the end of September before he a a CT Scan. He was told he had some form of cancer but it was not until December 3 that we were told what it was. He had surgery on Dec 20/04 to repair the vetrabrae and had steel pins inserted. They cleaned up what they could and he received 10 radiation treatments for the rest. He is suppose to start chemo in the next few weeks, but His Doctor does not think it will do much good. He has had 3 stents put in since October so we have undergone quite a bit of turmoil over the past few months. We have not been told about surgery to remove the tumors in his liver. We have been told he is at stage 4 and we should worry more about his quality of life. He is 55 years old and a real fighter but the last few weeks he has become very depressed and the pain in his leg seems to be getting worse. We were told that there is something available in our province(Ontario) but since he is at stage 4 the government will not approve the drug. We are both starting to fall apart due to the lack of support out there for us. Helena Mon, 14 Feb 2005 00:00:00 GMT Hi Cindy, How is your husband doing? I am very interested in your story. We went to see our third specialist yesterday at the Princess Margaret in Toronto, Canada. We received the same news as the other Doctors, because the cancer has spread to this vertabrae, they will not orperate. He is doing well considering what he is dealing with except that the stents are always clogging, he is having a metal stent put in on March 24. He starts Chemo on April 1/05 (5 FU). There are a few drugs we would like him to try, I am currently investigating why they cannot be offered to him. Take care, Lana H Helena Wed, 23 Mar 2005 00:00:00 GMT Lana, Just read your entry and hope all is well. My husband passed away from Intrahepatic Cholangiocarcinoma. I'm curious as to whether or not your husband was exposed to chemicals or served in Viet Nam. Thanks, jmar8 Jmar8 Sun, 03 Apr 2005 00:00:00 GMT My 40 year old husband was diagnosed with Intrahepatic Cholangiocarcinoma in September 2004. He had surgery at the beginning of October which removed part of his bile ducts and 60% of his liver. He recovered well from surgery and started radiation and chemo in January 2005. They were hoping that would get rid of any remaining cells but unfortunately it didn't. Another tumor showed up in March so they are starting him on another round of chemo (FOLFOX 6) next week. Does anyone know of any other treatments/medications or treatment centers/doctors that specialize in this type of cancer? We know there is a very bleak diagnosis for this cancer and want to try everything possible. The doctors have no idea how he got this cancer as it is so rare, especially in someone his age. He was not exposed to strong chemicals in his life and has not traveled to the countries which might put him at risk. Susan i Sat, 09 Apr 2005 00:00:00 GMT Cindy I read your referral to the doctor at Mayo, my brother has just been diagnosed and he is going to be seeking info at Mayo and I will pass your doctor name onto him... You have not been back on line since January and I am wondering how your husband has been doing...please let me know if he has been able to find food that is appealing to him...and gain weight. Thanks, Maria Barlow Sat, 09 Apr 2005 00:00:00 GMT I just registered with Cancer Compass and posted a message today seeking information about Cholangiocarcinoma. I read the existing messages and found yours of interest. My father was recently diagnosed with advanced biliary tree cancer. It has metastized into the liver and is not resectable. They had to resort to placing an external biliray drain in order to get his bilirubin count down and to stop the liver failure. We have been told my dad will not live long - at first they were saying less than a year - now they are saying weeks, maybe months. My father served in Vietnam and was exposed to Agent Orange. He is a machinist by trade and a shade tree mechanic on the weekends. Chemicals, especially petroleum based chemicals were a part of his daily life. On another note, my Dad is a Leukemia survivor. He had AML in 1990 and went into remission after a year of treatment. He filed some paperwork with the government relating to his Agent Orange exposure, but nothing came of it. Do you have information tying this type of cancer to AO exposure? I'm very interested in hearing what you know. Tammy Theonetjs Tue, 12 Apr 2005 00:00:00 GMT Lana, I am not Canadian, so I do not know your system, but there appears to be a special approval process available for getting certain medications, including Oxiliplatin. This is the web link. http://www.cancercare.on.ca/pdfchemo/Folfox6-adv-col.pdf You will note that this related to colorectal cancer, but I suspect the process will be much the sameGood Luck and do not give up! There are meds out there that are not as expensive as Oxiliplatin. They are carboplatin and cisplatin. They do not have quite as much documented results behind them but some physicians believe that one is about as good as another. They will usually tell you that Oxi is the best, followed by Cis then Carbo. It seems that the FOLFOX regime does not involve such costly meds, with the exception of the Oxi. Perhaps you could substitute Cis or Carbo. Even Gemzar alone, though not as effective as in combination, has shown good results for some people. Check this link and look for posts by Marlyn Samson. http://www.choosehope.com/forum/read.php?f=1&i=1046&t=1046 There is a lot of good info on that message board. Jeff_s Thu, 14 Apr 2005 00:00:00 GMT Jeff, Thank you so much for your information. My Husband started Chemo 1 1/2 weeks ago and is doing very well, he is taking Xeloda which is taken orally, he has had no side effects yet. Helena Mon, 18 Apr 2005 00:00:00 GMT Hi! I just came across this web site today. On Mar 17, St.Patrick's Day, my dad was hospitalized and diagnosed with choalangiocarcinoma. He had been undergoing tests and procedures since June 04. The physicians were unable to diagnose at that time. Dec 31 04 he was admitted with fever, chills and painless jaundice. An ERCP was done and he was scheduled for an open Chole on 1-6-05. The surgeon told us there was no cancer, just an en-larged gall bladder. He was dc'd home only to get sicker and sicker. A new stent was placed. He was unable to eat and continued to get more jaundiced. Blood work was finally ordered after numerous calls to the physician. His CA-19-9 came back at 182! Normals are 0-37. We were finally referred to a biliary surgeon Dr.David Linehan at Barnes-Jewish Hospital in St. Louis, MO. Within 24 hours my Dad, a very strong Irishman, had his diagnosis. He was scheduled for the Whipple procedure. After 5 hrs of surgery Dr.Linehan realized the cancer was not resectable. The Whipple was not performed. We were not given a good prognosis. On APRIL 8TH HE TURNED 78. We do not want to give up. He is not eating and now is having diarrhea. What can we do? We are open for any encouragement and suggestions. Thanks, Kathi Kate4 Thu, 21 Apr 2005 00:00:00 GMT Hi Lana, Xeloda converts to 5f when metabolized. 5fu is a well recognized med for a variety of cancers. But it is often used to greater advantage when combined with other meds, such as Gemzar, Oxaliplatin, Leucovorin. If your husband is getting good results on a single agent, then you may choose to let that bet ride for a while; but be ready to add other meds if the Xeloda stops working. One woman I know of (and have spoken to) has been alive 4 years with cholangio, and is doing well, on this combination therapy. The object here is to stay ahead of the wave while better approaches are discovered. There is no magic bullet for now, but the survival has improved a lot in the last few years, due primarily to the ability to keep the bile ducts open while additional chemo is tried. Mayo clinic in the States is using a novel approach to dealing with the duct problem called photodynamic therapy. It is described at the following link. http://www.mayoclinic.org/bile-duct-cancer/treatment.html. See also http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15740486. But doctors I trust at Sloan-Kettering in NY and elswhere would tell you that you should not use this as primary treatment. Chemo is the only way to go for that. If the liver starts to fail before all chemo approaches have had a fair chance, then local therapy like this is used to restore liver function and give chemo more time to work. Good Luck. Jeff Jeff_s Mon, 25 Apr 2005 00:00:00 GMT Jeff, What stage cancer did that women have? Rick Wamba138 Sun, 10 Jul 2005 00:00:00 GMT There are a million ideas out there, but my wife who has cholangiocarcinoma with a stent and lots of chemo coming in was put on tagamet reglan and a bile salt called Ursodiol. Slowly but surely her appetite has improved and the nausea has faded. Pain control is important. She takes low dose Oxycontin (10mg) just once per day and finds that she can eat much better about 45 min after a dose. It also helps to stick with breakfast-type foods that are usually better tolerated. I am sure that you have been told about Ensure. It is not a substitute for eating, regular foods, but it can help. Your husband has been through a lot. He needs to look down the road, not at the two inches in front of him. He is lucky to have you and knows it but is surely getting discouraged. Just be patient with him. Hugs help. Good luck. This disease can be beaten, though it is not easy. Jeff Jeff_s Thu, 14 Jul 2005 00:00:00 GMT I just found this website and messageboard and am so thankful to be able to talk with others who are touched by this terrible disease. My husband was diagnosed in July of 2004, had surgery but they were unable to do a Whipple because of NASH (non-alcoholic steatic hepatitis) which increases the chance of hemorrhage. They removed the gallbladder and a nodule from the liver, but could not remove the tumor in the bile duct. He had low-dose chemo to enhance the radiation in Sept and Oct. During the past year had a stent inserted into the bile duct and changed a few times, not to mention all of the other procedures/tests. He was doing well and then in Feb the CT showed multiple spots in the liver. He started on the combination of Gemzar once a week for 2 then 1 week off and Xeloda during the same 2 weeks, and was doing well (except for fatigue and gas and churning due to the radiation) and the tumors had not grown and had even decreased slightly, and the tumor markers were decreasing alot. When we went this past Fri for chemo we found that the CT from Tues had shown that 3 of the spots had increased in size from the scan in May. We will talk with our oncologist tomorrow and I'm sure she'll start another chemo agent or add one. I keep praying that God will cure him but I know that this is a very difficult cancer and the prognosis is poor. We were just married 5 years ago and at the age of 60 and 52 we found our soulmates - I want to keep him for as long as possible! We wouldn't be able to make it without God's love and our family and church family. I am so grateful to have found this messageboard to share information with people who are going through it with us. Donna548 Mon, 01 Aug 2005 00:00:00 GMT Jeff How is your wife doing, I noticed that you respond to many emails, you are so positive and hopeful, that is how my husband and I are. We spend a lot of time together, we see friends and family and always plan ahead, he has gone golfing today and we are looking a buying a new car for him. The Chemo was stopped in July as it was not working, however he has entered a Phase 1 Trial, other than being tired some days he is OK. How do you know so much about this cancer and why do you think it can be beaten? Helena Fri, 26 Aug 2005 00:00:00 GMT Hi Jeff, I also go under the name of Lana (nickname) We are Canadian. Helena Fri, 26 Aug 2005 00:00:00 GMT Hi Lana, My wife is doing pretty well. She has gained back about half the weight she lost and her liver function numbers are very good: low bili and other enzymes are normal or close to it. I only know what I have learned through our experience and reading everything I could get my hands on. Now, let's talk about your husband. I am a little concerned about him being in a phase I trial. Those are primarily about determining effective doses without excessive toxicity and usually at that stage there is very little data about the effectiveness of the drug. Phase II means they have the toxicity figured out and they are going to see about effectiveness at the doses deemed to be safe. Phase III means Phase II results were very promising, and they are now going to a much larger study. Karen gets low doses of 5 different drugs. They are: Gemzar, Leucovorin, 5fu, Avastin and Camptosar. The synergistic effect seems to be helpful, and the lower doses keep the side effects manageable. The Dr. we see, Howard Bruckner in Brooklyn, says that his response rates are just over 50%, whereas the national rates are only 20-30%. There is also a lot of material coming out on radiofrequency ablation and photodynamic therapy for control of the duct tumors directly. These methods do not reach metastatic tumors elsewhere than in the ductwork, but they can be very effective in keeong the ducts going while chemotherapy alternatives are tried. I have a number of articles on these things that I got from putting cholangiocarcinoma through the PUBMED wesite. You can do the same, or I can send you what I have. Good Luck. Jeff Jeff_s Sun, 28 Aug 2005 00:00:00 GMT Jeff and Lana, My initial message is #16 under cholangiocarcinoma. My husband was diagnosed in june of 2004, had surgery but not the full Whipple due to steatic hepatitis in the liver which caused alot of bleeding. Low dose chemo and radiation in Sept and Oct and when CT showed spots in liver in Feb started on Gemzar and Xeloda. Did well until this month when CT showed increased size and the stents clogged twice due to increase in size of the bile duct tumor. Sooo now we've just started FOLFOX (combination of 3 chemos and Avastin). No side effects from his first dose yesterday. Hoping it continues and that the tumors shrink. We too have stayed pretty positive but it's sometimes hard - like an emotional rollercoaster. It helps to talk with others going through the same thing. I'm glad to know your spouses are doing pretty well. I'm interested in knowing more about the radiation ablation and any other treatments. I'll try the website you mentioned, Jeff. Donna548 Donna548 Wed, 31 Aug 2005 00:00:00 GMT Hi Jeff and Donna How are your spouses doing? My husband has been quite well for the last few weeks, he has gone through the second round of the phase 1 trial, he usually has a few low day afterwards but then he bounces back. He has lower back pain and his Dr has put him on steroids, it has done wonders for him, some days he wishes he could go to work (he is on disability). He went for a CAT scan and X-rays last week, we should hear the results next week. We are a bit tense wondering what will show. If everything stays the same that would be OK. Everyday that he is here there are new developments in this type of cancer. It will be a year on Oct 16,2004 we knew somthing was seriouly wrong. Our family Dr called us at home on a Saturday morning. Helena Fri, 23 Sep 2005 00:00:00 GMT Hi Lana, John has had his stent clog on him 3 times in the past month and a half. Each time he has to start from square one building up his blood count and his strength. The only effect from the chemo he has had is fatigue. If we could get the stent under control it would be wonderful. The Dr prescibed a drug used to dissolve gallstones (Actigall) and hopes it will work to make the sludge in the bile duct smaller so it will not clog as often. He is so weak and can't seem to get his strength back. Glad to hear your husband is doing well after the treatments - what is it he is on now? I'll pray that the CT shows good news. We go Tues for John's 3rd FOLFOX treatment. God bless you both. Donna Donna548 Fri, 23 Sep 2005 00:00:00 GMT Hi Donna Sorry to hear about John's stent, Don had about 5 stent replacements, but the last one was a metal stent and so far he has had no problems. Maybe your Dr could put a metal one in, they do not bend as much at the plastic. I know how it feels, every time Don's stent would block he would jaundice and develop a fever and each time he would be in the hospital for about a week. Good luck and God Bless. Helena Fri, 23 Sep 2005 00:00:00 GMT Hi Lana, John had a metal stent put in a year ago, but when the tumor site bled (from radiation?)in Dec the Dr put plastic ones in also to stop the bleeding and kept them in to reinforce it (once the tumor started to grow this July. He's had them changed 2 times before and 3 times since July. Since he's been in the last time (just got home Mon) he's lost 8 pounds and has no energy. I'm focusing on high calorie, protein and iron foods, which gives me something productive to do to help. We got married 5 years ago, had been friends before that and he always says it took him 60 years to find the right woman - we're soulmates and this is so hard! Donna Donna548 Fri, 23 Sep 2005 00:00:00 GMT Hello, my 57 year old father was diagnosed with a cholangiocarcinoma in march 2005. unfortunately the tumour could not be removed by surgery. he has since been treated with carboplatin and gemcitabine but his ct scans show that there has been no improvement. does anyone have information about stereotatic radiosurgery? i have been in contact with 2 institutions one radiosurgery new york at the cabrini center and the other in miami known as cyberknife. Both claim that they can considerably improve his condition but i have my doubts. Does anyone know if this is similar or the same as radiation ablation? i would appreciate any information anyone may have on this treatment or any other possible treatments Amandeep Amandeep Sun, 25 Sep 2005 00:00:00 GMT Congradulations to your husband AND YOU! It is alot to go though. I was treated by Dr Gores and made it through the procedure. Don't let you husband get discourgaged. I made a website bileductcancer.org Muscat Sat, 29 Oct 2005 00:00:00 GMT I can only recommend MAYO I have survied the disease and if It wasn't for Dr Gores and others at Mayo I would not be here. view my website bileductcancer.org Muscat Sat, 29 Oct 2005 00:00:00 GMT Hi Donna and Jeff How are your spouses doing? I don't see very many messages these days, maybe everyone is dealing with new issues. My Husband is still here and still suffers a lot of back pain as his cancer had metastaszied to his lower 3rd and 5th vertebrae. He well be going into his 4th month of the trial drug in Dec, he seems to be holding his own. I hope and pray a lot, I want to believe that with positive thinking we can make some changes. He has started on steroids due to pain, but as a result he cannot stop eating, he looks so different he now has a very round full face, I hardly recognize him, but he enjoys his food, I can remember when could not eat at all so this is a welcome change. Helena Mon, 14 Nov 2005 00:00:00 GMT Hi Everyone! I am new to this website. My brother is 39 years old. He was diagnosed with cholangiocarcinoma in Oct. 2005. We have been searching for others who are dealing with this too. We have been doing a lot of research as I'm sure many of you have too. We would love to get in contact with any of you who would like too. The more we share information the better it will be for all of us. Doctors seem to treat this differently. It's good for us to know what treatment others are receiving. Our family is working on setting up a website just for cholangiocarcinoma. It's in the beginning phases, but we are trying to put all the information that we are gathering there. We have also been in contact with other families who are dealing with this. Let me know if you would like more information. We would love to talk to you. Good luck in this battle. Kelley Kelley Tue, 10 Jan 2006 00:00:00 GMT I can only pray others out there are fairing as well as can be expected with this terrible disease. My mom was feeling ill for months until abdonminal pain forced her into the ER where the promptly asked how long she had been jaundice. They live in FL and she (nor anyone around her) never noticed, just thought tanned :-} Couple surgeries to discover the cancer and off to Jacksonville Mayo. Great place. Many tests over weeks to determine if she was operable and she was. Immediately checked in and cancer removed BUT when the doc was in they sampled some spots... at first, during the surgery, the report was they were negative but second test of them later found them malignant. As most of you have found, this is a very agressive cancer, so I am told. The doc indicated during the week of the recovery that if he'd known the spots were cancerous before the operation, he'd not have performed it... my Mom has watched a few friends go thru chemo and does not want to have anything to do with it. We go back in a few weeks to talk to an oncologist but we're (mom's sons) expecting relatively bad news. My research has turned up that an elevated pH can effect tumors - is this urban legend? Bobku Thu, 09 Feb 2006 00:00:00 GMT Congratulations on your success in battling this disease. My wife Dawn was diagnosed with Cholangiocarcinoma (Klatskin Tumor) in December 2005. She had a liver resection in January. We are now trying to decide whether to have follow-up treatments of any kind. Do you recall the Chemotherapy drugs that were used prior to your transplant? Evan14 Thu, 02 Mar 2006 00:00:00 GMT Cindy I have not seen any messages from you in a long time. How is your husband doing? Helena Tue, 21 Mar 2006 00:00:00 GMT I have not seen any messages lately, how is John doing? My husband Don is not doing well, he is sliding daily, he can only walk with an upright device, can no longer stand on his own. He is now on a pump for pain and it does not seem to help, he sleeps a lot and we have very many bad days. His mind is still so bright but his body is failing. I believe it has now matastasized to all of his back and both hips. It is a horrible cancer and so little help out there. We are both falling apart. I check almost daily to see if there are any updates from anyone. Has everyone died? Helena Mon, 19 Jun 2006 00:00:00 GMT my dad has this blody cancer and he worked as a gm in a chamical factory making dye for 15 years in india. I say, those who are chem eng, stay away from all these bloody chemicals. there are a few chemicals which are not good for long run so don't risk ur life for work. try to warn ppl u know work with certain unhealthy chemicals. Rites Ritesh Sun, 25 Jun 2006 00:00:00 GMT I am sad to write that my husband Don passed away on July 27/06. I cannot believe that he has left us, I knew that in June he was stuggling, but for some reason (denial) I still had some hope that he would make it. I miss him so much as do my sons. He was such a fighter and I know he did not want to leave us, but his pain was to much and the doctors kept increasing his dosage every few days. In the end I believe that the medication is the reason he died sooner. Helena Wed, 09 Aug 2006 00:00:00 GMT Hi.  Looked at your website.  Thank goodness I found it.  What stage was your cholangiocarcinoma when you had your transplant?  My husband (age 57) was diagnosed in January 2006 and has had chemoemoblization twice, and now has "mild progression" in his tumors (none outside the liver) so his doctor wants to start him on oxaliplatin and gemzar.  Please share any information you can.  Thank you. Joani Sun, 17 Dec 2006 00:00:00 GMT  On 1/10/2006 Kelley wrote:Hi Everyone! I am new to this website. My brother is 39 years old. He was diagnosed with cholangiocarcinoma in Oct. 2005. We have been searching for others who are dealing with this too. We have been doing a lot of research as I'm sure many of you have too. We would love to get in contact with any of you who would like too. The more we share information the better it will be for all of us. Doctors seem to treat this differently. It's good for us to know what treatment others are receiving. Our family is working on setting up a website just for cholangiocarcinoma. It's in the beginning phases, but we are trying to put all the information that we are gathering there. We have also been in contact with other families who are dealing with this. Let me know if you would like more information. We would love to talk to you. Good luck in this battle. Kelley hi ,   this is priyank from india,my uncle has been diagonised with bile duct cancer and it seems that its in the preliminary stage so can u suggest us what treatment to follow. Pri007 Tue, 09 Jan 2007 00:00:00 GMT Hi - we are in Australia and have done Gemcitubine with Tarceva after having done Sirtex spheres and prior was 5FU and Gemcitubine - it has been almost 3 years and so far so good - and a healthy no diary diet so no stress on liver function - soy and nothing fried and mainly fish and loads of vitamins and heaps of juices beetroot carrot celery cabbage peppers apples - no chicken and organic beef 1 weekly - looking good to date oh and 70% Lindt chocolate 50 grams per day and Coopers beer 0.5% - change your food as it too is medicine......good luck and keep googling for help..... Eleni Tue, 23 Jan 2007 00:00:00 GMT  On 1/23/2007 Eleni wrote:Hi - we are in Australia and have done Gemcitubine with Tarceva after having done Sirtex spheres and prior was 5FU and Gemcitubine - it has been almost 3 years and so far so good - and a healthy no diary diet so no stress on liver function - soy and nothing fried and mainly fish and loads of vitamins and heaps of juices beetroot carrot celery cabbage peppers apples - no chicken and organic beef 1 weekly - looking good to date oh and 70% Lindt chocolate 50 grams per day and Coopers beer 0.5% - change your food as it too is medicine......good luck and keep googling for help.....Hi Eleni,My Mum has just started  a second round of chemo. This time with Gemcitabine. I came across you message when researching via the net. Mum has secondary Liver cancer, (primary unknown) has had two operations to remove tumors and has had sirtex spheres after her first round of chemo seemed to do nothing. Just wanted to know of any information from someone receiving Gemcitabine on outcomes, side effects, any foods best to keep down etc..? My 28yr old sister passed away 2 years ago from GIST a rare cancer (stomach,liver etc). Mum has been the primary carer for my sisters little (now 2 yr old) baby, I'm desperate to find something or someone to improve mums situation and end this nightmare.I hope all goes well for you and you loved ones.Ann Liver Tue, 30 Jan 2007 00:00:00 GMT A friend of ours is about to have his family member donate most of thier liver to my fiend.  THis is supposed to be a cure since it has not yet matastised yet.  Perhaps you could look into this at Mayo as well. Heart Wed, 08 Aug 2007 00:00:00 GMT  Tammy my husband died of cholangio this past April.  I am trying to get the government to add this cancer to the many they have caused by agent orange. If this happens there are many families that will receive much needed benefits and our loved ones names will be added to Vietnam Memorial.  If you have any additional information please let me know. I hope that your farther is doing well. misslynn Sat, 02 Aug 2008 00:00:00 GMT