CancerCompass message board discussion started by Susan M. on 6/24/2003 http://www.cancercompass.com/message-board/message/all,364,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome? Susan M. Tue, 24 Jun 2003 00:00:00 GMT I was diagnosed with Bile Duct Cancer in mid-March, Surgery was recommended, but they were unable to remove the tumor. I started a combination of Gemcitabine (Gemzar) and 5FU about a month ago and so far so good. Phred Wed, 30 Jun 2004 00:00:00 GMT My husband had a bile duct and 1/2 of his liver removed in May. We sent to M.D. Anderson for treatment. We were told in Oklahoma that the Margins were clear. The tests were done again at M.D. Anderson and the margins were not clear so we went on three months of chemo once every two weeks. Gemzar and Cisplatin. After three months we redid scans and found no trace but found tumors in head and pancreas that turned out to be Renal Cell that was from the renal cell he had in 2000. We did radiation to the head and shrank the tumor 25%. We have been on Interferon two times a day for three months and today redid our scans. We will know tomorrow if this treatment has done anygood of if they are the same. Will keep you posted. Betty W. Horse Mon, 10 Jan 2005 00:00:00 GMT Hi Betty: I was just reading your message and was wondering if it was a klatskin tumor your husband had. I had by bile duct removed and 50 percent of my liver also but was told treatment would not affect this type of cancer, I was also told that my chances are 50/50. The margins came back negative and the lymph nodes were not involved which I am very thankful. Its such a scary thing to go thru and there is never a moment that you don't think about it. Hope to hear back from you. Jackeline Sun, 27 Mar 2005 00:00:00 GMT My brother has just gone through a first surgery, the surgeon could not remove his bile duct becuse the liver had a few , microscopic areas of cancer. He did do a procedure which is called hepatico jejunostomy, bypassing the gallbladder. This was just performed today and we are all in a state of shock. Can you please refer me to doctors that have specialities in this area. We are located in the NE but will travel for good refferals. I am spending my time getting as much info as possible Thank You Barlow Wed, 30 Mar 2005 00:00:00 GMT Hi Maria: I was just reading your message and first let me tell you I am sorry about your brother. I had my bile duct removed and 50% of my liver, the tumor I had was called a Klatskin tumor don't know if that is what your brother has. The margins of my liver came back negative and the lymp nodes were negative, I am from Canada and I feel I had the very best of surgeons, they did a resection where they connected part of my bowel , this was done in December of 2004. Hope everything turns out okay with your brother. If you have any questions don't hestitate to ask. Jackie S Jackeline Sun, 03 Apr 2005 00:00:00 GMT I noticed that you were in Canada, Where and who did the surgery? My friend has jaundice in october. They said that he has a klatskin tumor. The liver was clear so they were able to do the surgery. Unfortunately, before they do it, in Montreal, they had to block a vein that lead to one of his liver lobes. Now mestastasis are spreading all over his liver. We are really angry about this. Due to this, he can't be operated. Guillaume Québec, Canada Hamacbleu Sun, 10 Apr 2005 00:00:00 GMT Hi, I am from Moncton New Brunswick, I had to go to Halifax Nova Scotia to have my operation, Dr. Porter did the surgery, I was told he was the best in Canada, he took out the bile duct and half of my liver, he told me my chances of it coming back are 50/50, I am so frightend of it coming back, I go back down to Halifax in July, before I go down I have to have another ct scan, I just have to keep my fingers crossed. I hope your friend makes out okay. What are they doing for him? Jackeline Sun, 10 Apr 2005 00:00:00 GMT They started to give him gemzar and only gemzar on january 2005. It hasn't worked, the tumor that was at the beginning of october 4 cm in diameter is now at 7. They started last week to give him gemzar and CP11. I don't think that the chemo will cure him. He is 38 years old We're actually reading averything about alternative medecine. Despite of his state, he stay really positive about this and he feels really fine. Metastasis has appeared on is liver as soon has they wanted to do something to him. So I think that if they have been able to operate you and you don't have, as for today, any metastasis, you're ok. Stay positive. Stay away from the statistics these are numbers based on a cancer so rare that they don't mean anything. 50/50 means that they just don't know. You're already on a good path. Guillaume Hamacbleu Sun, 10 Apr 2005 00:00:00 GMT Hi Jacqueline, My mother was diagnosed with Klatskin Tumor. She is 68 years old. We are from Ecuador (Latin America). Over here doctors do not advice surgery, but we know in Ecuador there is not much experience in theses cases. Could you let me know the medical center where you had surgery with doctors names and if possible telephones and addresses. We are going to send the scans to different centers. We would appreciate your help. Kind Regards, Victor A. Victor Sun, 17 Apr 2005 00:00:00 GMT Hi Victor: Sorry to hear about your mother, I had my surgery done in Halifax, Nova Scotia at the Royal Victoria Hospital, the surgery was done by a doctor whose name is Dr. Jeffery Porter, I think I was very lucky to have him as my doctor, he seemed to know what he was doing. He told me radiation and chemotherapy would not work. I am keeping my fingers crossed, today I don't feel to bad except for being tired very easily. Let me know how you make out. Jackeline Tue, 19 Apr 2005 00:00:00 GMT Jackeline, Thanks for the information. Right now my mother is feeling better because has a percutaneous stent running up to the bowel, that eliminated the itching. Doctors are planning chemo and radio, but we are still looking for surgery options, if possible. Regards, Victor Victor Tue, 19 Apr 2005 00:00:00 GMT Hi Victor, I'm sorry to hear about your Mother. My father was diagnosed Mar 17, 05. He had surgery Mar 22, 05 at Barnes-Jewish Hospital in St.Louis, Mo. His surgeon is a top biliary surgeon in the USA. His name is Dr.David Linehan. Good luck to you both. Kathi Kate4 Thu, 21 Apr 2005 00:00:00 GMT Hello everybody, I am looking for information about Xeloda and taking folic acid. It says on www.xeloda.com that you should tell your doctor if you are taking folic acid. In my country Denmark this is all kinds of multivitamin tablets. My father (64) has Cholangiocarcinoma with mets to the liver. Has to stents one in each lobe. Is currently receiving Xeloda for a week, one week of and then over again. Simultaneously receving Oxaliplatin and Gemzar injections every fortnigth. He is right now fighting a pneumonia, as I have found out is at normal side effect of Gemzar. Did you know? Other side effects of Xeloda is cardiac arrest, that scares me a lot. Looking forward to hearing from anyone. Greetings from Randi Ranner Fri, 06 May 2005 00:00:00 GMT Hi Viktor, My wife had a Klatskins Tumor which was successfully resected last May (2004). At the time it had invaded the portal vein and her prognosis was grim. We were told by local doctors that it could not be resected. We ended up at the University of Wisconsin where surgery was performed and the tumor was completely removed. It took 60% of her liver. She has up to this point been relatively well but a cat scan shows suspicious areas on her liver so it may have recurred. We are to get a biopsy done next week. The last year has been great by comparison to death and she has lived an 85% normal life. Chemotherapy appears to be in our future however. I would strongly recommend that you get in touch with Dr. Kalioglus office (I may have misspelled his name . He is Turkish)Phonetically it is pronounced Kuh lie uh loo at the University of Wisconsin. He is very very good. Also I am looking at some promising nutritional, low impact approaches. There is a drug called Artemsinin which was used to treat malaria successfully. Since it appears to use iron to destroy the organism and since cancer cells use an inordinate amount of iron it has been used to treat cancer cells some say successfully (it is hard to believe everything you read plus being desparate does not help matters). The website is http://www.ctrf.org/cim/pdfs/singh/pdf The drug if I remember right has been approved by the World Health Organization for Malaria treatment. There is some really encouraging anecdotal information at http://www.springboard4health.com/notebook/nutrients_artemisinin.html Please let me know how you all are doing. It appears we are in the fight together.My e-mail address is joespillman@hotmail.com if you want to communicate. God Bless You Joe Persistent Sun, 15 May 2005 00:00:00 GMT Hi Randi, My wife has the same cancer and took Xeloda for an extended period of time with minimal side effects. Because of the scrutiny he is no doubt receiveing from his Doctor, you cant worry too much about the cardiac end of the problem. She underwent a removal of the tumor a year ago but the cancer appears to have resurfaced. She will be taking Gemzar also. Please let me know how things are going. We are battling the same disease. God bless you Joe Persistent Sun, 15 May 2005 00:00:00 GMT Hi Barlow My wife underwent a resection of a bile duct tumor a year ago and has been relatively healthy for a year. The surgery she underwent was radical but it has bought her a year even though it appears to have resurfaced. She had 60% of her liver removed at the University of Wisconsin at Madison. She too had spots on the liver but they cut out most of her liver and just keep doing biopsies as the surgery progressed. The Doctors name is Dr Kalioglu. I dont know if the name is spelled right. Phonetically it is Kuh lie uh loo. God Bless You Joe Persistent Sun, 15 May 2005 00:00:00 GMT Hi, I hope that I have the right message reply. "Jackeline" I hope that you're doing well after your surgery. My father was diagnosed about a year ago and went through the 5fu treatment and cisplatin. He was not recomened for surgery. I don't know if that's because we live in British Columbia and don't have the expert surgeons or that there's no chance of resection. Can you find out if Dr. Porter can take on another patient from Canada. We live in Prince George BC. we have all Ct scans on CD and have all Drs reports. My father has some kind of fluid starting to build up in his stomach and has to be drained about once a week. He's getting weaker by the day. It would be a scary thoought that we didn't try all avenues open to us. We would rather get this done in Canada than the USA. Any reply would be appreciated. Thank you. Canada Mon, 27 Jun 2005 00:00:00 GMT Hello Joe. I hope your wife is doing fine and that the cancer is decreasing. My father has now had 8 times of chemo. Every 14 days he receives to drugs Oxaliplatin and Gemzar. In the week after that he takes Xeloda pills and then it starts over again. After the first 4 times the ct scan show regression he is now awaiting a new ct scan and we will be told mid august if there still is regression. His side effect is flu-like feeling, nausea, obstipation and dizzyness. He is also more tired than normal. But can almost do everything like before. Not much news I just wanted to reply to your message. Randi (Denmark) Ranner Sun, 31 Jul 2005 00:00:00 GMT Hi Randi I am happy your dad is doing so well. Xeloda is a very powerful drug but well tolerated by many. We have since found out that my wife's tumor was not Klatskins but a recurrent breast cancer that happened to show up where Klatskins tumors show up . A followup test showed it was estrogen sensitive so now Rebecca can take a drug that blocks estrogen. They have given her two years but alot of talk like this is nonsense since they couldnt properly identify the cancer in the first place. Life takes strange turns. Stay hopeful. Joe Persistent Sun, 31 Jul 2005 00:00:00 GMT Hi Randi I don't know if my first attempt at replying was successful or not so I will send this again. Glad to hear your Dad is doing well . He sounds like he is tough. Those are powerful drugs he is receiving. We found out my wife's cancer was not a klatskins tumor but recurrent breast cancer that happened to show up at the same spot a klatskins tumor does with the same symptoms. She is taking a drug that blocks estrogen . I wish you well. Joe Persistent Sun, 31 Jul 2005 00:00:00 GMT I'm 67 years old, I had a CT scan, and a uLtra sound, which showed "something in the bile duct of my Liver" Thats what my Gastro Doctor said. he is going to do the tube down into my stomach and over to the duct this wednesday. I am in alot of pain. I also suffer from RA, and Sjorgens Syndom. My Gastro Doctor says the CT scan and ultra sound showed my Bile duct almost closed. he told me the risk with this next test. I would like to hear from someone who found out they have cancer of the bile duct, and how are they doing. thanks Sandy Lee Mon, 12 Sep 2005 00:00:00 GMT Hello there, I am new to this post and new to the world of bile duct cancer. My mom was just diagnosed last week and they did surgery to remove the tumor from her bile duct. We are waiting to hear if the cancer has spread to her portal vein but in the meantime I am doing everything possible to educate myself as to options, places to turn to for info etc so that I can be a good advocate for my mom. We live in Toronto Canada and, if Jackie S is still on this forum I would love to chat with you. I am finding a lot of resources on American websites but not so much relevant information in Canada. If anyone else out there is from Canada and has dealt with any professions in this area I would love to hear about your experiences. Lisa from Toronto Lisaduncan Thu, 29 Sep 2005 00:00:00 GMT HI, My mom was diagnosied with a klatskin tumor in April 2005, we live in Florida, and I have been told that this is not the best place in the world for medical treatment, they stated her cancer was inoperable and uncurable, I still do not understand why (other than possible blood clots in the protal vein) that surguery could not be done. She went to the Mayo clinic in Jacksonville, FL where she was told she was not a canadit for a liver transplant due to the portal vien being damage. My mom has always been very healthy, walking 5 miles a day and is a non-drinker and non smoker, I am looking for any information on a Klatskin Tumor, good or bad. Thank you for listening. Stephanie Stephanieann Mon, 28 Nov 2005 00:00:00 GMT My name is Kellee and I'm 24 years old. In May 2004 I noticed that my mom, who just turned 65, was looking a little jaundiced. She also had itchy palms and a few other symptoms. I did a quick search online and called to tell her to make an appointment with her Dr. A CT scan was scheduled and they found something. Not that they could explain what "it" was, but we were sent to University of Virginia Med. Center. They orginally thought she had PSC but after months of ERCP's and stent problems my mom was finally given the diagnosis of cholangiocarcinoma and not much hope. A few days later in late August 2005 she went in for one last ERCP and her duadnum (sp?) was punctured. She had emergency surgery to make the repair but they found that the tumor had spread much farther than originally thought. It was in the gallbladder, around an artery, and in one lymph node that was in the middle of the mess of tumor. A few days after the initial surgery they went in again and removed her gall bladder. After a two week stay in the hospital the doctors decided at the moment the liver was not recectable. They decided to go with a treatment regimen of radiation and chemo starting in early Nov. 2005. UVA is one of the few hospitals in the country that has a TOMA radiation machine. It produces a highly concentrated strong beam of radiation to specific tumor sites. Everyday for 20 days she has a CT scan to be sure they "hit" the right places. Now we have finished with the treatments of radiation and Xeloda (an oral chemotherapy drug). We now wait until January '06 to see if the treatments worked well enough to resect her liver and rid her of this horrible disease. Has anyone else had success in completely removing the cancer with resection? Is anyone in remission? We can't even get our doctors to give us a prognosis or time of live...they just say everyone is different in response to treatment and we'll just have to wait and hope she doesn't have any more stent problems... Mkwillia Thu, 08 Dec 2005 00:00:00 GMT Hi Kellee, I read your post. I'm so sorry to hear about your mother. This disease is a beast. My name is Kelley too. My brother who is 39 was also diagnosed with cholangiocarcinoma in Oct. 2005. At that time we were told that there was not much hope. Since then we have been researching for information and trying to find others who are dealing with this disease. We have talked to many people who have given us good information. We decided as a family, in conjunction with a few others families who are also dealing with this, that we wanted to start a website just for cholangiocarcinoma. Here's the web address. www.cholangiocarcinoma.org. Please register on the site so that we can all share information. As I have been looking for others with cholangiocarcinoma, I have found many who post on a site and then never hear from anyone. We want this to be a place for all of us to share and receive information. If you are in contact with anyone else who would be interested in this site please share this info. with them. As a family we are not ready to give up in this fight. Information is a very powerful tool. We hope this site will be helpful to you too. If you have any suggestions for the site, let us know. I hope your mom gets feeling better. Kelley Kelley Fri, 13 Jan 2006 00:00:00 GMT Hi My partner has Cholangiocarcinoma (primary not established)13cm tumour in liver - treated with Avastin 5FU Cisplatin (last 14 months) shrunk 30% then Sirtex spheres direct into tumour-dietary changes No Fats, No Fries, No sugars, No Dairy, No Salts-hard for me as carer in the beginning but now easy to live this way-avoid labouring liver with bad diet-meditation daily-reduce stress-seek inner calm-also olive leaf extract, curcumin, milkthistle, pomegranite, all berries, for tumour reduction, angiogenisis, Now in clinical trial with Gemcitubine and similar Avastin drug on whole body...living longer than predicted-still far from in the clear though...change of living style great help-focus on low stress reduce fear by asking and seeking information-take care you all...in this together - Eleni Eleni Tue, 24 Jan 2006 00:00:00 GMT Hi, I realize that these emails messages are old, dating back to 2005. But if there are any Canadians who can share their stories about Bile Duct cancer I would appreciate it. It would help to know what their doctors said, what stage they are at, etc. I have a 38 yr old brother who's doctor has told he may have this type of cancer. We are waiting for the results this coming Friday. I would love to hear from you. Thank you, Mckean Sun, 19 Mar 2006 00:00:00 GMT Hi, I'm writing in hope that there are some Canadians who are able to share their stories regarding Bile Duct Cancer. My 38 yr old brother from Toronto, ON may have this cancer. We find out the results from the biopsy on Friday. If any out there can share their insights, thoughts, prayers. I would appreciate it! My family and I are petrified but at the same time we need to be positive. Please write. Mckean Sun, 19 Mar 2006 00:00:00 GMT To everyones message I have read- hang in there. I am a physician and patient diagnosed with cholangiocarcinoma three years ago at age 34. I also have ulcerative colitis, small amount of primary sclerosing cholangitis in my liver which lead to cholangiocarcinoma. My situation is paradoxical being a physician and patient, but I guess that's how it goes. I had the left lobe of my liver removed and hepaticojejunostomy by Dr. Yuman Fong at Memorial Sloan Kettering. Pathology was good showing negative margins, and negative lymph nodes. Dr. Fong is my hero and surgeon-did a great job. I went back for scans every three months for about 1 1/2 yrs and now every 6 months. CT scans are so sensitive that they thought they were seeing something grow back recently. A PET scan confirmed negative. Overall, I have survived this horrible disease but holding my breath. Best case scenario 5 yr survival (from the studies I have read) is 50% to 60%. The problem is that there are just not alot of paients out there who underwent liver resections and negative margins. Its clear to me that the best chance for long term survival is at the initial operation with a right or left hepatic lobectomy and negative margins. The studies support this. Up to 70% of the liver can be resected. The liver is a remarkable organ in that it regenerates itself in just a few months. The question is common risk factors associated with having a big operation (smoking, heart disease, diabetes, previous heart attacks, etc.) These all can lead to a worse outcome and morbidity after surgery. However, if you have your surgery at a hospital where they do this surgery often, the morbidity rate should be very low. Dr Fong believes there are only 4-5 surgeons in the world who can do this surgery correctly with low morbidity (no biliary leaks, intrabdominal abscess, etc). Any surgery with tumor left behind or positive margins equates to a very poor 5 yr survival. For patients with unresectable bile duct cancers-There is no effective chemotherapy with good results. 5-FU has been tried at Mayo clinic in Rochester, MN with radiation therapy with a response rate around 15%, but I believe no complete responses. Radiation therapy has been studied in patients for palliative therapy with stenting and has prolonged patient survival, but again no complete responses. Drj450 Tue, 04 Apr 2006 00:00:00 GMT Hi Jackeline My name is denyse. I had sugery in sept 05 to remove a tumor in the right hepatic duct,they also removed 60% of my liver. the biopsy came back negative on the tumor and the liver.the docs told me this is very rare.what i am wondering is do you still have pain nausea,tiredness at times? I'm starting to think I'm nuts because the doctor says I should be feeling almost back to normal,I've had ct scans UGI -rays,I get low grade fevers.I feel like I am whinning when I tell my doc this and guilty to ask for pain and nausea medicine.any info would help thanx denyse Denyse Fri, 07 Apr 2006 00:00:00 GMT Walter I too, was operated on by Dr Fong. What a gifted man he is. He resected my liver, and took a few lymph nodes out. Since the lymph nodes were involved, the long picture looked bleak. HOWEVER, after 7 months of Gemzar and Xeloda, my scans have been clear since July 2004. (I was operated on in Dec 2003) Hang in there, maybe our common link holds the answer to this disease. Dette1957 Mon, 10 Apr 2006 00:00:00 GMT I read your message and think I can have a good dialogue with you. I am not a doctor but I have done a lot of research and you should look into/follow the work of Pro Pharmaceuticals. They have a new drug, well according to the FDA it is even though it has no bilogical activity, that encapsulates the chemo drug and delivers its payload to the cancer cells. The drug is called DAVANAT after the inventors and they got this drug after their 4th try at making it back in 2001. DAVANAT is a carbosome and encapsulates the 5-fu. Go to the website and check out the video. Anyhow, the DAVANAT has an affinity for the Galectin-3 lectins which are overly expressed on 75% of all solid tumors. Well guess what, in phase I humans they had a 70% response rate. Are you surprized - probably not. Well now you will be - this was done on stage III/IV patients after 30 days. That is how quick this works. Now let me throw you the kicker. In order to get into this trial you had to be refractory to 5-FU and failed every other therapy. Now sit down - There are ZERO side effects. They are in Phase II for colon cancer - they met their primary endpoint and stopped enrollment after 15 patients. They have 2 Objective responses and more coming. Think about the number and compare them to AVASTIN. On stage III patients AVASTIN has only a 1% ORR! vs 14% and climbing every month as more responses keep coming. Everyone is stabilized. What does this mean for cholangio patients. Well DAVANAT works on a wide range of cancers including Cholangio. There are 2 compassionate use patients with cholanio and I believe both are alive. One person was as Oshner and they lost track of her after the hurricanes hit. I believe she is 100% better but no one knows for sure. Here is my e-mail if you want to contact me to discuss this more --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- This board doesn't get too much posting. In my opinion this is the best hope right now for all Cholangio patients. Cancer is all about the receptors not cocktails of chemo. Topgun Sat, 24 Jun 2006 00:00:00 GMT My dad has been diagnosed with Klatskin tumor. No one will talk to us or see him. Who did you see. Any help is welcome. Jay Jayscott Thu, 13 Jul 2006 00:00:00 GMT Hi, My dad just has been diagnosed. We are in TX and are hearing the same thing you are. No wants to look at him. Scott and White in Temple, TX put a stent in his liver for the bile to drain. We wanted to go to MD Anderson so we left Temple and now Anderson will not take us. Temple will not return phone calls no help from American Cancer Society. Boston and New York will not take us. If you hear any thing good please let me know. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Jayscott Thu, 13 Jul 2006 00:00:00 GMT What is your current prognosis? Perplexed Mon, 17 Jul 2006 00:00:00 GMT I also have Cholangiocarcinoma (Klaskins Tumor). I found out on May 8, 2006. I spent most of Month of May having Bile Duct drainage tubes inserted into my stomach and right rib cage inorder to drain my liver. I am now being treated with Xeloda and Gemzar at SCCA (Seattle Cancer Care Alliance). The program I am on is two weeks of taking Xeloda twice daily for two weeks and on each Thursday I get Gemzar through infusion. The third week I take no chemo, and I also have no side effects. On this coming Thursday after infusion I am getting a CT scan which should show what is happening to the tumor. Hopefully it will be shrinking. The other interesting point about my tumor is that I have no pain, the only pain I have is from the drainage tubes and they are getting better. If it wasn't for the drainage tubes I would not no I had a tumor. Please let me know what is happening with you. Pete in Washington Armand Wed, 04 Oct 2006 00:00:00 GMT hi there- i hope that your mother is okay but much of the news on bile duct cancer is quite grim... any advice you could give me? i'm almost in tears writing this. it means so much to me that so many people are willing to help out. let me know if there's anything my family should be looking into. my mother and father are in winnipeg and i'm in los angeles. i'm going home to see her on the 23rd. thay've started chemo therapy but there have been some setbacks. peace and thank you for your time, david Daviddistant Tue, 17 Oct 2006 00:00:00 GMT My mom has recently been diagnosed with bile duct cancer as well and took her 2nd treatment of gemzar this week but is suffering with fevers every night and has a very difficult time eating, lost a ton of weight, very weak....she is seeing 'one of the best' (so they say) oncologists in NY but we can't seem to get any answers out of him. She has a porcelained gall bladder as well. Does anybody know anyone with this cancer where Gemzar actually worked? They said that they can't operate on her because of the tumor location yet I am reading about people who did undergo surgery. The doctor also said that her liver is healthy??? Any feedback from anyone would be GREATLY appreciated. I don't mean to add to the grimmness but alot of what I am reading is going to help my brother better communicate with her doctor. Also, this oncologist has requested that only one family member be the spokeperson....we can't all (4 people besides my mom) go in with her when she sees him, but my mom likes him so I am stuck. Janev Thu, 16 Nov 2006 00:00:00 GMT I was told in August 2006 that i have bile duct cancer as you can guess it came as a real shock as I am only 31 with a lovely wife and a 3 year old son. I was transfered to a hospital in Belfast and had a whipple operation on the 2nd October 2006. The docters are now saying the tumor was removed, margins are very good. It had spread to 1 lymph node although I had 11 removed which means 10 are clear. The docters are telling me i am 'cured' their words. As you can guess I am delighted and it seems the cancer was spotted just in time. I am due to start Chemo next week to make sure any cells that were left behind are killed off I am getting the drug 5FU. I have no doubts my recovery has been thanks to God. Andrew Andym Fri, 24 Nov 2006 00:00:00 GMT My wife has cholangiocarcimona and I have been researching the subject. The problem with them is they come back. The three centers you should check out are M.D. Anderson in Houston, the Mayo Clinic and Washington University in St. Louis (Barnes Jewish Hospital). A new technique is being tried at Barnes Jewish Hospital (Dr. William C. Chapman) that is part of a clinical trial that started at the Mayo Clinic. It involves radiation and chemo followed by liver transplant. I know that sounds extreme but this cancer tends to come back and so some extreme treatments are the best answer. I am also researching Ambrotose. Mayo does transplants, Anderson does not but Anderson is the top research center on this disease. Honolulu Sun, 17 Dec 2006 00:00:00 GMT I am so sorry to hear about your wife. My husband was diagnosed almost 4 years ago with MM (multiple myeloma) and we have a friend who started selling us the Ambrotose and other Mannatech product only to find out that they are under investigation here in Texas by the Attorney Generals office for false advertising there products are not approve by the FDA and some are even harmful to take. We spent almost $6,000 mainly on the Ambrosote and the catalyst products only to find out recently that all it is ground aloe vera and sugar so we stopped and are now just taking alot of supplements that the Myeloma foundation recommends. I just thaought I'd let you know because it's very expensive and it promises alot that it doesn't do and it surely hasn't cured my husbands cancer but it didn't do any damage except to our check book. Take care and I hope things go well for you and your family. Sincerely,Shelia She126 Sun, 17 Dec 2006 00:00:00 GMT After reading your article were you diagnoised with having bile duct cancer? How are you feeling since you posted this back in January? Is the tumor still shrinking? Are you still on the same regimented therapy? Do you mind me asking you how old you are? Thank you, I wish you the best of luck. This information will be most helpful for my father who has been diagnoised with bile duct cancer.                      Thank you  C1534 Mon, 18 Dec 2006 00:00:00 GMT My wife has an unresectable Kaltskins's tumor that was declared inoperable and untransplantable at Sloan Kettering in November. Washington University in St. Louis (Dr. William Chapman) is doing a follow-up of a studty done at Mayo where they transplant after a complex chemo/radiation regimen. The problem with these tumors (cholangiocarcinoma) is they return after resection or transplant a high %-age of the time. Chemo alone is palliative. Nebraska and some other centers are participating in follow up data collection on thi s procedure. Qualifying is very difficult because they carefully screen for cancer spread. Go on the Clinical Trials websites and look for treatment options. The Lance Armstrong website (Live Strong) is a great resource for searching for cures. Don't quit. Have your doctor inquire of Barnes Jewish Hospitale/ Siteman Cancer Center at washington University. Dr. Chapman will talk to your doctor and see if you are a candidate.  Mayo is also a in the loop. MD Anderson does not do transplants so that is not  a place for a cure.Wayne - Honolulu Honolulu Sat, 23 Dec 2006 00:00:00 GMT Try Roger Jenkins at the Lahey clinic in Boston (near Boston). Also, the Mayo Clinic in Minnesota and Barnes Jewish Hopsital in St. Louis (Dr. William Chapman). There are new treatments but they involve a transplant. Honolulu Sat, 23 Dec 2006 00:00:00 GMT My husband who is 37 years old.  was recently diagnosed with Bile Duct cancer.  He started with flu like symptoms in October and then after 1 1/2 weeks became jaundiced.  They thought that he had gall stones blocking his bile duct.  They put in a temporary stint and on November 13th he was diagnosed with Stage 3 pancreatic cancer.  On November 28th he had the Whipple surgery.  They were able to remove the tumor as well as 5 cm. of his intestine, 2/3 of his pancreas, his duodendum, gall bladder and bile duct.  They were able to leave all clear margins.  His cancer had not spread into the portal vein or the liver.  When the pathology report came back he was diagnosed with bile duct cancer not pancreatic.  Although, they say the prognosis is better no one can really say how better. Scott has been feeling great since the surgery and actually appeared healthy before having surgery.  He did not have any of the typical symptoms other than jaundice.   He will begin chemotherapy tommorow with Gemcitabine.  He will go for two months once a week for treatment and then switch to 6 weeks of radiation and a chemotherapy pill and then two months of Gemcitabine again.  We have kept a positive attitude during these last 4 months.  We have two sons, 9 and 12.  How are things going for you?  Hopefully, all is going well.  We are hoping that good health and young age are on our side.  Our thoughts and prayers are with you and your family.      Gargrif Wed, 17 Jan 2007 00:00:00 GMT Hi there, how are things since November?  My mom was diagnosed with bile duct cancer on oct. 2 2006.  She has had several rounds of chemo and just yesterday the dr. told her she has 4-6 months left?  I pray that your mom is holding up.  Best wishes my friend.  Temeku Mama Wed, 28 Feb 2007 00:00:00 GMT  On 1/24/2006 Eleni wrote:Hi My partner has Cholangiocarcinoma (primary not established)13cm tumour in liver - treated with Avastin 5FU Cisplatin (last 14 months) shrunk 30% then Sirtex spheres direct into tumour-dietary changes No Fats, No Fries, No sugars, No Dairy, No Salts-hard for me as carer in the beginning but now easy to live this way-avoid labouring liver with bad diet-meditation daily-reduce stress-seek inner calm-also olive leaf extract, curcumin, milkthistle, pomegranite, all berries, for tumour reduction, angiogenisis, Now in clinical trial with Gemcitubine and similar Avastin drug on whole body...living longer than predicted-still far from in the clear though...change of living style great help-focus on low stress reduce fear by asking and seeking information-take care you all...in this together - EleniDear eleni ,            Great to hear that things are going well,We are in Melbourne ,My sister also has recently  been diagnosed with cholangiocarcinoma  ,our options appear to be limited from our initial diagnoses, no treatments have commenced yet , we are sourcing dietry options as well as medical and would realy appreciate the advise from someone who has already gone down this road.Would love to speak if possible?,--- Message edited by CancerCompass staff: for personal protection, email address and phone number removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks and Regards George   Georg Wed, 14 Mar 2007 00:00:00 GMT  On 4/21/2005 Kate4 wrote:Hi Victor, I'm sorry to hear about your Mother. My father was diagnosed Mar 17, 05. He had surgery Mar 22, 05 at Barnes-Jewish Hospital in St.Louis, Mo. His surgeon is a top biliary surgeon in the USA. His name is Dr.David Linehan. Good luck to you both. Kathi Dear Kathi, I saw that your Father had surgery can you enlighten me at all on this klatskin tumor stuff.  We were told last Thursday and am waiting an oncologist appointment.  They do not work fast enough for me I have so many questions.  Hope to hear from you. Dbbslb21 Mon, 19 Mar 2007 00:00:00 GMT  On 7/13/2006 Jayscott wrote:Hi, My dad just has been diagnosed. We are in TX and are hearing the same thing you are. No wants to look at him. Scott and White in Temple, TX put a stent in his liver for the bile to drain. We wanted to go to MD Anderson so we left Temple and now Anderson will not take us. Temple will not return phone calls no help from American Cancer Society. Boston and New York will not take us. If you hear any thing good please let me know. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----We are also in in Texas.  Where are you at now.  We just found out last Thursday and trying to get an appointment with an oncologist.  I read a whipple operation was done and cured one individual.  I have so many questions and no answers.  If you have info for Texas let me know.Thanks ,Sonny Dbbslb21 Mon, 19 Mar 2007 00:00:00 GMT Your story sounds very similar to what we've recently been going through with my 59 yr old mother. Her only brother passed away 9 years ago from pancreatic cancer, so our immediate response when she woke up one morning last December jaundiced with a bloated feeling in her abdomen was to assume the worst. Initial CT scan showed a clear pancreas but sludge in her gallbladder and her bile duct was strictured. First ERCP showed no evidence of any tumor and they inserted a stent to open up her bile duct. The stents kept moving and after 2 more ERCPs, an ultrasound, an endoscopic ultrasound and the removal of her gall bladder, the doctors still found no evidence of cancer and blamed the stricture on gall stones. It wasn't until they opened up her gall bladder to find no gallstones that her team recommended looking into having a preventative Whipple done. Since our family was already familiar with the Whipple procedure (my uncle/mom's brother had one 9 yrs ago), we initially couldn't believe that the doctors were suggesting this as a preventative measure, but, considering the clues, family history and after learning that these are done daily on a preventative basis, my mom said let's do it. Her surgeon did a phenomenal job and she was out of the hospital within a week of her Whipple. They removed a 2cm tumor from her distal bile duct with good margins but 2 of 36 lymph nodes removed showed involvement. Needless to say, we were praying that the surgery was a cure. We found an amazing oncologist at MD Anderson and my mom decided to have her chemotherapy there. She was to start a Gemzar and Cisplatin regimen every 2 weeks, but the blood test 2 days before she started showed that her CA 19-9 marker was elevated. We were hoping that the elevated marker was a result of the removal of her last drain a week before, but out oncologist wanted to be safe and changed the treatment to Oxaliplatin and Xeloda on a 3 week cycle. My mom has always been in amazing physical condition and the chemo combination didn't seem to have any significant side effects with her, but above all, we were hoping that it was working. Her CA 19-9 marker continued to rise and our oncologist had a CT scan and PET scan done before the start of her 3rd cycle...3 days ago we found out that her cancer had come back and spread to 2 tiny spots in her liver. We were devastated. Her oncologist changed her protocol back to Gemzar and Cisplatin but also added Avastin, a monoclonal antibody that targets the cancer cells in the bloodstream and has shown good effectiveness dealing with colon and breast cancer. We're praying that it works. she still hasn't shown any side effects from the treatment except being a little tired...knock on wood. We're also looking into having her tumor tissue sent to a lab that does molecular profiling and targeted therapy testing on the tumor cells in a test tube. My father has spoken to a couple of long-term pancreatic cancer survivors who have attributed their success to having their tumor tissue profiled and treated with targeted therapies. It's definitely considered experimental but seems to make a lot of sense. We'll look into anything at this point. Danb31 Sat, 28 Apr 2007 00:00:00 GMT  On 4/28/2007 Danb31 wrote:Your story sounds very similar to what we've recently been going through with my 59 yr old mother. Her only brother passed away 9 years ago from pancreatic cancer, so our immediate response when she woke up one morning last December jaundiced with a bloated feeling in her abdomen was to assume the worst. Initial CT scan showed a clear pancreas but sludge in her gallbladder and her bile duct was strictured. First ERCP showed no evidence of any tumor and they inserted a stent to open up her bile duct. The stents kept moving and after 2 more ERCPs, an ultrasound, an endoscopic ultrasound and the removal of her gall bladder, the doctors still found no evidence of cancer and blamed the stricture on gall stones. It wasn't until they opened up her gall bladder to find no gallstones that her team recommended looking into having a preventative Whipple done. Since our family was already familiar with the Whipple procedure (my uncle/mom's brother had one 9 yrs ago), we initially couldn't believe that the doctors were suggesting this as a preventative measure, but, considering the clues, family history and after learning that these are done daily on a preventative basis, my mom said let's do it. Her surgeon did a phenomenal job and she was out of the hospital within a week of her Whipple. They removed a 2cm tumor from her distal bile duct with good margins but 2 of 36 lymph nodes removed showed involvement. Needless to say, we were praying that the surgery was a cure. We found an amazing oncologist at MD Anderson and my mom decided to have her chemotherapy there. She was to start a Gemzar and Cisplatin regimen every 2 weeks, but the blood test 2 days before she started showed that her CA 19-9 marker was elevated. We were hoping that the elevated marker was a result of the removal of her last drain a week before, but out oncologist wanted to be safe and changed the treatment to Oxaliplatin and Xeloda on a 3 week cycle. My mom has always been in amazing physical condition and the chemo combination didn't seem to have any significant side effects with her, but above all, we were hoping that it was working. Her CA 19-9 marker continued to rise and our oncologist had a CT scan and PET scan done before the start of her 3rd cycle...3 days ago we found out that her cancer had come back and spread to 2 tiny spots in her liver. We were devastated. Her oncologist changed her protocol back to Gemzar and Cisplatin but also added Avastin, a monoclonal antibody that targets the cancer cells in the bloodstream and has shown good effectiveness dealing with colon and breast cancer. We're praying that it works. she still hasn't shown any side effects from the treatment except being a little tired...knock on wood. We're also looking into having her tumor tissue sent to a lab that does molecular profiling and targeted therapy testing on the tumor cells in a test tube. My father has spoken to a couple of long-term pancreatic cancer survivors who have attributed their success to having their tumor tissue profiled and treated with targeted therapies. It's definitely considered experimental but seems to make a lot of sense. We'll look into anything at this point. I have posted these suggestions before so I apologizre if I spamming the Forum but Davanat is a new drug targeted for bile duct cancer. It is a carbohydrate that the cancer cells grab onto that then makes the 5FU or Xeloda many times more effective. The university of Michigan and (I think) Barrett cancer Center in Cincinnati are testing it with good initial results. Also, Andrew Kennedy at Wake Oncology in Cary, North Carolina has pioneered the microsphere treatment of liver cancers that is quite spectacular if they can access vthe tumor blood supply. They inject millions of tiny gspheres with radiation in liquid form into the tumor blood supply and kill the tumor. This can be an ongoing process if more tumors show up. I asked Dr. Kennedy if he could use this technique on bile duct tumors and he said "yes". Send him your scans. He will respond quickly. His results with liver cancer have been spectacular and he is getting press all over the world. The Mayo Clinic and Washington University in St. Louis (Dr. William Chapman) are doing liver transplants after a specialized combination of radiation and chemotherapy. Mayo Clinic reports as high as an 82% survival rate at 5 years in carefully selected (no metastases) bile duct cancer patients. Call the liver transplant office at Barnes Jewish Hospital, Siteman cancer Center for Advanced medicine in St. Louis. The university of Pittsburg has a new vaccine in trial for pancreatic cancer. It may be applicable to bile duct cancer which is also a similar solid tumor. Good luck. Davanat may buy you some time. Cures are on the way. Honolulu Thu, 17 May 2007 00:00:00 GMT  On 6/24/2003 Susan M. wrote:I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?Susan M...Your email is over 4 years old now and I cant help but wonder your "status".  I have bile duct cancer and wanted to talk a bit, but maybe I will wait and see if you reply to this first. Pamngreenvillesc Fri, 13 Jul 2007 00:00:00 GMT  On 7/13/2007 Pamngreenvillesc wrote: On 6/24/2003 Susan M. wrote:I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?Susan M...Your email is over 4 years old now and I cant help but wonder your "status".  I have bile duct cancer and wanted to talk a bit, but maybe I will wait and see if you reply to this first. I too am curious about your status.Wayne Parsons Honolulu Fri, 13 Jul 2007 00:00:00 GMT HI,  I am sorry to hear of your cancer. My dad was diagnosed 6 months ago, had surgery, in which dr did not get all. He had radiation (which I recommend) - the surgeon thinks the ct scans look good after the series, a radiologist does not agree. We have found doctors are not necessarily up front with the truth. May dad's cancer ( bile duct-klatskins)  has a life expecancy of 6 months - 2 yrs if one is lucky. Dad is having chemo once per week - one with gemzar and other chemo combo, the second week with gemzar, the third week off, and the series repeats.  Go on the  NIH website to see about trials. Since it is a rare cancer (Klatskins is) there aren't many beyond phase 1 or 2. There are 3 books that I sent dad that he found helpful: 1 of: Cancer: 50 Essential Things to Do: Revised and Updated EditionSold by: Amazon.com, LLC1 of: Beating Cancer with NutritionSold by: Amazon.com, LLC1 of: The Chemotherapy & Radiation Therapy Survival Guide (Chemotherapy and Radiation Therapy Survivor's Guide)Sold by: Amazon.com, LLCBest of luck to you and your kids and spouse. My prayers are with you. Please let me know if you find out anything new about bile duct cancer. Debbi   Hopefuld Wed, 15 Aug 2007 00:00:00 GMT One more detail. It is important to have two different types of chemo - the gemzar and sorry but I don't know the name of the other but I know that it is platinum based. Hopefuld Wed, 15 Aug 2007 00:00:00 GMT thank you for posting this again. I missed it the first time. My dad is having chemo right now and there are differing opinions as to whether the radiologist got all the cancer - so chemo has been upped. I am so grateful to read about the therapy you wrote about. Bless you, D.R. caregiver Hopefuld Wed, 15 Aug 2007 00:00:00 GMT Look into the drug DAVANAT and also you are close to Dr. Andrew Kennedy in Cary, NC who just removed my wife's Kaltskin's tumor with a new non-invasive procedure called radioembolization or Y-90 microspheres. No surgery, it took 2 hours and uses radiation infused into the tumor blood supply. It is done as an outpatient procedure and they can go back in if tumors reappear. also check out Dr. William Chapman at Washington University in St. Louis and Dr. Rosen at Mayo Clinic in Rochester who are pioneering a new cure for cholangioacrcinoma. Wayne Honolulu Wed, 15 Aug 2007 00:00:00 GMT  On 6/24/2003 Susan M. wrote:I'm a 47 year old female with 3 children. I had a tumor removed from left lobe of my liver Feb. 19, 2003 at Vanderbilt in TN. Path report stated cholangiocarcinoma, primary tumor removed with good margins. Very curative surgery. Went back for 3 month CT June 9 and was told more tumors had shown up in right lobe. Oncologist recommending chemo (5FU and Gemzar with leucovorin). Any miracle stories or some type of good news about this cancer and outcome?  arlo2 Sat, 01 Dec 2007 00:00:00 GMT My husband (52) was diagnosed in mid-August.  He had a liver resection and partial whipple mid-September and his surgeon was Myron Schwartz at Mt. Sinai in NYC.   He is now under the care of Oncologist; Dr. Howard Bruckner at Cabrini Medical in NYC.  I would highly recommend your consulting with him if possible. He is a pioneer in the treatment of this kind of cancer and has had unprecedented success in treating GI cancers of all kinds  If this is not possible you may ask your doctors to confer with him.  He is THE GUY. We are in the middle of pretty intense treatment right now but I am very optimistic that my husband will be well again. My prayer for you is for all the support and love you need from family and friends.  Love is the true healer.  I send my love via this mail!   I arlo2 Sat, 01 Dec 2007 00:00:00 GMT Hello,I am wondering how you are doing today?My sister had a Klatskin tumor removed 15months ago by Dr. Fong at Sloan Ketterring .  She had her gallbladder removed and half her liver resected and her bile duct rerouted with her interstine.A few weeks ago she received grave news that they think the cancer is back with results from a Cat Scan. She recently has had a Pet Scan at a different radiology center and they make no mention of anything suspicious in the liver.She had a biopsy this past Friday at Sloane and had to return the next night for 2 nights because of fever.  Thankfully there was no internal bleeding and no infection.  They sent her home and we wee Dr. Fong on Monday.My sister is only 39 years old.   Jean8 Wed, 23 Jul 2008 00:00:00 GMT I am alive well since i last posted on this site. I did develop psc in late 2006 and went on to have liver failure. I had many tests to determine if any cholangiocarcinoma was present. Ultimately it was negative. i went on to liver transplant at ucla in Dec 2007. All is well after 7 months and i will return to work next month, cancer free. My case is very unique, i wish there where more people in my situation. I am finishing my surgical oncology training at at the Univ. of Calgary-Tom Baker Cancer Centre. I am spared to help other patients with CCA and all cancer patients I will treat get better. I understand everything they have went through or will go through. So I plan to put my past experience to work.In regards to your sister, the biopsy of the liver is very difficult to read. Most pathologists understand inflammation and cancer can look similar. If the biopsy is read positive, have the biopsy sent to Mayo Rochester, Mn for a second or third opinion. Or scedule an appointment with Mayo and have them do the biopsy. Good luck to your sister.  Drj450 Wed, 23 Jul 2008 00:00:00 GMT