Latest Bile Duct Cancer discussions http://www.cancercompass.com/message-board/cancers/bile-duct-cancer/1,0,119,20.htm Sat, 19 Jul 2008 00:00:00 GMT Sat, 19 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Kia Ora from New Zealand, My Dad has just been diagnosed with Bile Duct Cancer, he is 56 and has 6 loving children, my youngest brother is 6 and I am 38!  We have been trying to understand this terrible disease and get our heads around what it all means. Its been 3 months since we were first told and since then it has been a rollercoatser - at times we have been given false hopes and Dad had surgery- but unfortunatly they were unable to remove the cancer and found that it has spread to his lymph node by his heart.  we are still waiting for the next step - apparently chemo.  During the waiting period my Dad - who has never been sick before now and is a fit strong and hardworking man is now reduced to the couch with little energy and unable to eat much.  His appetitie is gone and as he finds it hard to sleep he is losing energy each day.  My question is where do I find help with trying to feed him foods that will support & nurture him.My Dads is the strongest man I know and I still find it unbelievable that this is actually happening, I am hoping to find out how I can help him through this journey he is now on. http://www.cancercompass.com/message-board/message/all,26105,0.htm Kiwi07 Wed, 16 Jul 2008 00:00:00 GMT I've posted on here a few times, unfortunately on 7/7 my mother lost her battle with this cancer thankfully she died asleep and in her own home. Unfortunately in her case she had doctors that didn't care and treated her as though she is a by the book case which she had proven time and time again that it wasn't the case for her she wasn't going to go when they told her it was over. Sunday night after 13 months of a long hard fight she knew her time was coming and spoke of two men being in the room (who we didn't see) and later that night she slipped into a coma. I only pray that they do more research on this cancer and catch it more in people before they hit stage 4. She was in an experimental treatment called Full Fury which helped her till she went into the hospital for a feeding tube and the hospital made some fatal errors that made these last months extremely difficult for her and led to her giving up hope. I hope everyone who has this disease wins their fight and if the time comes finds comfort in their family in the end. Family and a positive attitude is winning half the battle. I Pray for anyone with the disease and their families and may god bless all of you and what you have gone through. http://www.cancercompass.com/message-board/message/all,26064,0.htm KK345 Mon, 14 Jul 2008 00:00:00 GMT My cousin had a liver resection in April 2007 where 80% of her liver was removed. Her cholangiocarcinoma reoccurred in March 2008 and 2 more instances of cholangiocarinoma reoccurred in June 2008. She is currently on chemotherapy. I would appreciate recommendations for cholangiocarcinoma specialists in the U.S. or abroad. Thank you. http://www.cancercompass.com/message-board/message/all,26025,0.htm EricL Sun, 13 Jul 2008 00:00:00 GMT Hello Everyone,Today I would like to post a question.  I have breast cancer and I would like to know how radiation went for you.  What systems you experienced.Thanks all for this information.JaeAnn   http://www.cancercompass.com/message-board/message/all,25946,0.htm JaeAnn Fri, 11 Jul 2008 00:00:00 GMT My 47-year-old sister learned today that she is Stage 3 cholangiocarcinoma which is inoperable.   She can start Gemcitabine  this week or start a trial at the UW-Hospital Paul Carbone Cancer Center.   The problem with the trial is that she would have to wait 3-4 weeks to start the trial.  The trial is Sorafenib in conjunction with Capecitabine and Oxaliplatin.    She likes the idea of being in the trial but waiting 3-4 weeks worries her.Can anyone describe their results with Gemcitabine for Stage 3 cholangiocarcinoma?Anyone have any experience with Sorafenib/Capecitabine/Oxaliplatin combination?Just looking for real thoughts from real patients.Thank you so much.     http://www.cancercompass.com/message-board/message/all,25839,0.htm Dee2249 Tue, 08 Jul 2008 00:00:00 GMT After 8 stressful months, a successful bile duct surgery and reconstruction of intestine/liver, and chemo with Gemzar, my husbands cancer has returned now to the right lobe of the liver and in the area of liver where intestine was attached.  Surgeon told us that no additional surgery is possible which we fully understand.  Obviously, the Gemzar did nothing to arrest further growth.Has anyone had Cyberknife radiation?  We are concerned that it will do more damage to the area of surgery and further complicate the digestive process, which for the moment, seems to be functioning quite well. CA markers are  now elevated and liver function blood work showed reasons for concern. Thank you all and to Cancer Compass for this website that provides assistance and counsel to so many.Bernie (PA Girl)  http://www.cancercompass.com/message-board/message/all,25789,0.htm PA girl Mon, 07 Jul 2008 00:00:00 GMT My father passed away from bile duct cancer in April of 2008.  It was found in the 4th stage and was not operable.  Even though we knew chemo would probably not work, we tried it anyway.  He was diagnosed February of 2008 and died April 10, 2008.  Mayo Clinic could do nothing and MD Anderson said the only option was the one form of chemo that was offered by his doctor here in Wichita.  I have been looking for support groups, bile duct cancer organizations etc...and have found nothing.  I want awareness for this horrible disease.  Does anybody know of any organization that is specifically raising money for bile duct cancer research, treatments etc.... http://www.cancercompass.com/message-board/message/all,25783,0.htm ginae Sun, 06 Jul 2008 00:00:00 GMT I came upon this site and message board while searching for information about cholangiocarcinoma.   I am a registered nurse and have been reading a lot of information, We are dealing with a very strange situation in our family.   I had a sister who died 5 years ago of cholangiocarcinoma at age 47.   Another sister was just diagnosed with the same cancer---she is now also 47.   My first sister was Stage 4 when diagnosed and died within 10 months.   It sounds like my other sister is Stage 3 or 4 also.  I know this is not unusual for the cancer to be diagnosed at a late stage.  As a family, we are absolutely stunned that we have a second family member with this same cancer.We have found information about a familial cancer syndrome called Lynch Syndrome.   My sister will be evaluated for a genetic link, and if something is found, the rest of us will be evaluated.I am wondering if anyone out there has had more than one case of bile duct cancer in their family?   Was anyone identified with a genetic syndrome in their families?   Has anyone had any thoughts or learned anything about a toxic exposure that could have caused their bile duct cancer?The question has arisen in our family about our dairy-farming history and whether there could have been chemicals that affected us?  When I was reading a few posts on this message board, I saw a few references to dairy farming.Anyone have any knowledge, experience, thoughts or comments?thanks for your time, and good luck everyone.  http://www.cancercompass.com/message-board/message/all,25770,0.htm Dee2249 Sun, 06 Jul 2008 00:00:00 GMT Hi everybody,In 2007 I introduced myself on this board and told about my husband Peter. Diagnosed in May 2007 with a Klatskin tumor, surgery broken off and a life prediction of 2-3 months.Still now he is doing great (though there are signs the cancer is spreading to the lungs), and we have become greedy and opt for at least another year of quality life.In this respect, Peter started to read about cancer and he came across a very interesting book by Dr. David Servan-Schreiber. The title is "Anticancer".  This dr. in psychiatry had brain tumors twice, and after the second time he started investigating everything he could lay his hands on regarding cancer. He comes to very interesting conclusions regarding our Western eating pattern and the chance of getting cancer.Peter (who is a chemist by profession) is finding a lot in this book that makes it worthwhile for him (for us) to try and turn around the way we were eating. I have no idea yet whether it brings us anything. But it is a very healthy way of eating and it can at least make his body stronger to fight longer.I wanted to tell this to you all. It has nothing to do with taking all kinds of supplements, only with leaving the "enrichment" of foods we, in the rich Western countries, are taking in after the second world war.I have no experience yet to make you happy with. We are just going to start this experiment and time will tell whether "eating the way our great grandparents did", without all kinds of sugar, saccharine, colouring and other stuff has helped.I'll keep you informed about things. And if you're more interested, try and get the book.Good luck and strength to you all, patients and caregivers.Iris. http://www.cancercompass.com/message-board/message/all,25692,0.htm Flower1 Thu, 03 Jul 2008 00:00:00 GMT Hello,My sister is 39 and has had a Klatskin Tumor removed 14 months ago. They removed her gallbladder, half her liver and has had her bile duct removed and rerouted  with her intestine. This was done at Sloane Kettering in Manhattan.  She is scheduled for a biopsy after a catscan has revealed another tumor is present and her lymph nodes are swollen.  We are hoping for good news and to prove her doctors wrong after the biospy. Hopefully we will get these answers next week.  http://www.cancercompass.com/message-board/message/all,25546,0.htm Jean8 Mon, 30 Jun 2008 00:00:00 GMT I'm looking for some help/suggestions/anything.  My Dad (76 yr young) was diagnosed with Bile Duct Cancer in Feb. '08 and consiquently had Whipple Surgery.  He appeared to recover well from the surgery and was sent home after a few weeks in the hospital and then rehab.  Approx 30 days after surgery he became short of breath and started to vomit.  While in the ER they emptyed 5-6 full viles of juices from his stomach.  After tests and CT scans they could find nothing wrong or any blockage.  He recovered and rehabed and again after 30 days the same thing happened.  Again he recovered and now 5 months later and numerous infections later he is back to having stomach empting problesm.  The last 4 months he basically has had no nutricien with the exception of TPN through a pic line.Does anyone know how to get the stomach to empty???  Please help my family and I would be so gratefull. http://www.cancercompass.com/message-board/message/all,25537,0.htm Sue NJ Sun, 29 Jun 2008 00:00:00 GMT My husband had the whipple done on June 23rd and is still in the hospital but doing great so far.  Blood pressure a little high and they are giving him insulin but he is up and walking several times a day.  The doctors so far are very please with his progress.  Joann http://www.cancercompass.com/message-board/message/all,25525,0.htm Slushy Sun, 29 Jun 2008 00:00:00 GMT Hello to all especially Iris and Leonard. I have not been on for a while, being busy... My sister is basically sleeping a lot (almost 16 hrs. a day) and has dizzy spells that are utterly debilitating. She continues to lose weights... Interestingly enough, her bile is flowing well, the stents are OK (she is on massive antibiotic doses to keep them uninfected). I wonder what are the stages of bile duct cancer as it advances. Thanks to anyone who has an experience to share. Bayla http://www.cancercompass.com/message-board/message/all,25098,0.htm Bayla Mon, 16 Jun 2008 00:00:00 GMT My husband is doing very good, thank god!He will see the doctor on wed the 11th, we hope they will remove the drains and advise him he can resume eating and drinking. It has been 5 weeks since he could eat. 2 more weeks and then they should remove the pic line, this should give him back his independence.I would think it will be soon he will start chemo or radiation.They say no lymphnode involvement , but the cancer is non diferential? Not sure what that means. Sorry about the spelling.Can any one tell me what that means?     http://www.cancercompass.com/message-board/message/all,24828,0.htm lacasalia Sun, 08 Jun 2008 00:00:00 GMT I'm a 45 year old single mom of three with cc and I'm doing OK so far.  It's been nearly a year since diagnosis, and I've been in and out of the hospital a few times.  I had major exploratory surgery in March, but the tumor was unresectable.  Since my stents came out in November, except for the surgery, I've managed to stay out of the hospital.  I'm still working full time every day.  I do most of the things that I used to do, and am planning on taking up riding my bike as soon as summer comes.  I'm in Washington State, so it's still winter here :)I still have a medium size tumor deep in my liver, and surrounding the IVC.  But I'm doing ok so far.  I just want people to know that some people can do ok with cc.  Later this month, my youngest daughter and I are going to Lourdes, France to visit the baths and pray for a miracle cure. But even if there isn't a cure, in  a way, cancer is a blessing because I have had the blessings and prayers of friends and family supporting me.  Also, I don't have to worry about retirement!  http://www.cancercompass.com/message-board/message/all,24786,0.htm HockeyFan Sat, 07 Jun 2008 00:00:00 GMT HI MY NAME IS CLAUDIA, MY SISTER IN LAW WAS DIAGNOSED WITH DUODINAL CANCER WHICH IS THE BEGINNING OF THE  SMALL INTESTINE.THEY WERE NOT ABLE TO REMOVE THE TUMOR,SHE JUST HAD HER 2ND ROUND OF CHEMO LAST TUESDAY, RIGHT NOW SHE IS IN THE HISPITAL, HER VOMITING WAS SO SEVERE, SHE WAS DEHYDRATED, HER POTASSIUN,MAGNESSIUM, HEMIGLOBIN AND RED CELLS WERE VERY LOW, SHE HAD TO HAVE BLOOD TRNSFUSSION TODAY.PLEASE IF ANYONE OUT THERE IS FAMILIAR WITH THIS PLEASE GIVE US SUGGESTION ON WHAT TO DO TO HELP HER.                                                 THANK YOU,                                                        CLAUDIA       http://www.cancercompass.com/message-board/message/all,24724,0.htm claudia.lorena Thu, 05 Jun 2008 00:00:00 GMT My husband has two kinds of bile duct cancer, Melanoma inside the bile duct and another kind of cancer outside of the bile duct.  lHas  ayone ever hear of that before?    He will have the whipple done on June 23rd.  Any and all prayers for his recovery are appreciated.    http://www.cancercompass.com/message-board/message/all,24504,0.htm Slushy Thu, 29 May 2008 00:00:00 GMT My husband started with insane itching and it all fell apart once the jaundice started.Long story short, he had a whipple and then we learned there was a leak.So he is on T.P.N , I.V antibiotics , 3 drains and has a pic line he also needs a small surgical site packed.This is not brain surgery, I know but this is all so overwhelming. Has anyone else had these results after surgery?  http://www.cancercompass.com/message-board/message/all,24464,0.htm lacasalia Wed, 28 May 2008 00:00:00 GMT I am trying to determine which/who are the leading clinics/surgeons in the U.S. and Europe performing surgery aimed at curing bile duct cancer.The mother of my partner, who is located in Europe, has recently been diagnosed with bile duct cancer, and has been told in her home country that it would not be possible to perform surgery on account of the location of the tumour.  I am therefore trying to identify leading institutions whether in the U.S. or Europe (or indeed Asia - I gather this type of cancer is much more prevalent there) which are pioneering radical new surgical techniques in this area.  Any recommendations would be greatly appreciated.   http://www.cancercompass.com/message-board/message/all,24446,0.htm jimbob1000 Wed, 28 May 2008 00:00:00 GMT Dr. Gamagami at the Sharp Memorial hospital in San Diego, CA. took a chance and removed 99% of the bile duct tumor that was moving up into the liver. The biopsies have all been inconclusive so we arent out of the woods yet. When other doctors would have looked in and stitched him back up immediately, he went in and finished the job after 8.5 hours. We are all grateful and blessed for the calculated risk he took to save my partners life. Please, keep the hope alive, miracles do happen. I will continue to visit this site and keep up with everyone. Peace and love to allDarren  http://www.cancercompass.com/message-board/message/all,24443,0.htm DarrenS Wed, 28 May 2008 00:00:00 GMT Hi, My mom was diagnosed 2 years ago with stage 2 bile duct cancer; clear lymph nodes,  had the whipple, and just had her 2 year check up.  All blood work normal and the Dr. didn't order a CT scan this time, as she is doing great.  He mentioned to her that if she is clear after 4 to 41/2 years, then she pretty much has beat the cancer.  She will still have to go every 3-4 months for blood work until that point, but so far so good.  I hope this has encouraged someone out there. http://www.cancercompass.com/message-board/message/all,24414,0.htm lukesamtim Tue, 27 May 2008 00:00:00 GMT In april 08 my father in law(60) was told he had pancreatic cancer. The doctors did more tests and concluded it was bile duct cancer that had also spread into his liver. He went in for a drain and they scheduled surgery for a liver resection and to clean out his bile duct. He went in on tues they said his cancer in the liver was big and had to take out most of his liver and reconstruct his bile duct. The doctor said it was one of the hardest surgeres he's done it took 8 hours!He thought he got it all...i'm not sure if he ended up doing the whipple procedure or not? But he is still in the ICU on life support they have a feeding tube in and ventilator in place. They have had to give him blood and plasma and now kidney dialysis. The doctors say he's very sick and will be on life support for another week at least. They won't tell us if they think he will die.I can't ask the doctor too many questions or my mother in law will lose it.What do you guys think? Does he have a chance please help any one make it through something like this? http://www.cancercompass.com/message-board/message/all,24305,0.htm MRSROCK2006 Fri, 23 May 2008 00:00:00 GMT Hello everyone, what a great site and resource! Last week my partner found out that he has a tumor in his bile duct, blocking the fluids from the gallbladder. Over the weekend they had put in a stent to drain the gallbladder, the first attempt wasn't long enough to they went back in and put in a longer one that is now doing what it needs to do. The "brush" biopsy came out negative. The Dr's said that they still need to go in and look at the rest. On tuesday 5/27, he is going in for the resection surgery. At that point they will remove the tumor and other organs if need be. Then we will know if it has spread or not. He is back home now preparing mentally and physically for this next phase. This is the first case of this sort of cancer (if it is) they have seen in someone as young as he is, 32. Can anyone give any input? What to expect? Is there hope for total cure and removal? They said he's had the tumor for about a year. Any information is appreciated.  Warm regards to all,Darren  http://www.cancercompass.com/message-board/message/all,24240,0.htm DarrenS Wed, 21 May 2008 00:00:00 GMT My husband had a Whipple procedure for bile duct cancer one year ago.   He is cancer-free, but extremely anxious about what lie ahead, both in terms of how many years of life he has left and what health issues are likely.  Right now, it is frequent bowel movements.  At different times during the past year he used pancreatic enzymes and cholestrymine (spelling??).  Nothing made a real difference, so we are starting over with a gastroenterologist.   I am new to this website, and hope to hear of your experiences.  Thanks. http://www.cancercompass.com/message-board/message/all,24103,0.htm Zarek Fri, 16 May 2008 00:00:00 GMT I received a notice from Cancer Compass about this drug. Please look up the company that has done the research/developement on it - Marshall Edwards Inc. They were given 16.8 million to research and develope a chemo drug for bile duct and pancreatic cancers. Triphendiol causes tumor cell death and slows growth. It also sensitizes tumors to chemo treatment.The University of Alabama @ Birmingham lead by Professor Ewan Tytler has conducted the research, along with Dr. Xiaohong and Professor J. Anthony ThompsonI'm so broken hearted over this. I looked it up on the internet and found a press released dated 1/22/08 - 8 days after my husband, my Love died from bile duct cancer. I can't help but think that this research was going on while my husband was alive and maybe it could have helped him. We would have tried anything! I even asked if anyone knew a good witch doctor?? We were willing to travel to the ends of the earth for help. We had reached out to the Mayo Clinic, Cancer Centers of America, MD Anderson and our doctors for any trials for bile duct cancer. They all told us there weren't any at this time. And now I find out there was research going on only 200 miles away. I cried and screamed as I read the reports and the success they are having with this drug. So I had to share with ya'll. I hope that this information will help you in your quest for a cure or for more time with your loved ones. Unfortunately, it came too late for Jim and I.Never, never give up hope. Without hope you have nothing!I miss my Love more each day.The pain and loneliness is beyond description.I hope this information helps. Because that's what Jim would have wanted. He was always more concerned about his fellow man verse himself.Make the best of the life you have been given. Play the cards you've been dealt - even if it means you have to bluff to win all the chips! Jim was a very good poker player. He and "the Poker Boys" have been playing every Thursday night for 20+ years. Unfortunately, we were dealth a very bad hand and all the bluffing in the world didn't help us win this one.TnFishersLovingWife - "I Love My Baby"Jim T. II      3/26/62 - 1/14/08 in your honor, memory and in Love - I miss you Pookie! http://www.cancercompass.com/message-board/message/all,24082,0.htm TnFishersWife Thu, 15 May 2008 00:00:00 GMT