Latest Bile Duct Cancer discussions http://www.cancercompass.com/message-board/cancers/bile-duct-cancer/1,0,119,20.htm Thu, 15 May 2008 00:00:00 GMT Thu, 15 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 My husband had a Whipple procedure in April of 2007.  Since the surgery he has undergone a round of preventative chemo/radiation in May and June of 2007.  The tumor was removed, and no evidence of cancer was found in tissues or lymph nodes.  After dealing with surgical abcesses, weight loss and continued loose/freguent bowel movements, we are connected with a GI specialist to combat the digestive problems.   If anyone has info on what can be expected (and for how long, etc.) it would be appreciated.  We have realized new meaning in the expression "life before cancer and life after cancer".   I need to connect with others who can relate!   http://www.cancercompass.com/message-board/message/all,24044,0.htm Zarek Thu, 15 May 2008 00:00:00 GMT Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near the portal vein noted by sonographic evidence suggestive of invasion of the vein, which is why they are saying that surgery is not an option.Has anyone else been told this? What treatments did you try?Her Kaiser MD in Santa Rosa says he's seen just a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn  http://www.cancercompass.com/message-board/message/all,23866,0.htm excelpro Thu, 08 May 2008 00:00:00 GMT Hi,My 78 yr mom was diagnosed last Friday and 3 stints were put in by CA Pac Med Ctr Tues.  She has one known malignant lymph node near the liver, cancer in the bile duct, a 3.5 cm mass in the liver near that vein (i can't recall the name(. Her Kaiser MD in Santa Rosa says he's seen a handful of cases (he looks young) Does anyone have info/resources about a UCSF or other local oncologist with more case experience here in N CA  with bile duct ?She is feeling good, eating well, not in pain but had 16 Bilirubin/Jaundice Friday which is why they did the CAT scan and the stints.  Her bilirubin is going down well now since the stints BTW CA Pacific Med Ctr in SF was awesome!They want to do chemo but I am unsure which approach would be best. I see that surgery can be used to cut out the bile duct and tumor.  I want to get a second opinion about this option, esp how risky surgery is, and why could they not just cut out the bad lymph node, tumor and bile duct and see if any other areas have cancer (CAT scan of upper torso was clear; they say they can do a PET scan to check other lymph nodes; I thought there was a blood test that checked tumor levels....still learning/grasping). She has no other health issues, walks and eats well. Any advice appreciated re: Kaiser system in N CA or nearby and/or UC resources in N CA or S CA. God bless you all,Carolyn  http://www.cancercompass.com/message-board/message/all,23860,0.htm excelpro Thu, 08 May 2008 00:00:00 GMT I am sad to say that my mom (diagnosed in Dec 2007 with Stage IV bile duct cancer) signed paperwork today for Hospice to become involved with in-home visits...however, it also pleases me that now that chemo (Gemzar) has stopped and flushed out of her system she is actually feeling "good" again!She has been 2 weeks with no treatment, had a HIDA scan and then a CT scan last week - both revealed that the cancer had spread to the lungs and had continued to grow larger in the areas already affected (bile duct, liver, lymph nodes).Her bilirubin had been elevated and she started looking a bit jaundice.  She has lost 40+ lbs since Christmas.  She had been eating very little, had dry heaves a lot and slept about 15 hrs a day.   THAT all changed after they "flushed" her and gave some medication via the port and offered Hospice.  She came home hungry and ate twice!  She ate more in one sitting than she had eaten in an entire week (combining all meals together).  She ate more today and looked good, felt good, and slept very little.  Hospice may not be necessary for the "death process" immediately for my mom - we're not giving up just yet and neither is she --- but the option of Hospice is nice to have, and we will use it... while we enjoy mom feeling better and more alive than the past few months.Dr. Kim (Jacksonville, FL Mayo Clinic) the local Oncologist (Dr. Jose Tongol in Albany, GA) and his staff have been very helpful and more than generous with their time and knowledge.  We appreciate them so much.  We look forward to spending some great quality time with each other while God prepares a place for her in Heaven. One thing for sure during this ordeal - we have learned what is priority, what is not, what is necessary and what is not, what is not worth mentioning and what is so important to say or do...  We have prayed more than before, spoken more than before, visited more than before - quality of life is SO important - far more important than what you might realize early in the diagnosis stage --- in the beginning we just want a miracle, then we search for education - answers - and then we share our resources and our stories --- and I THANK you for sharing and for listening and responding - - - I'll continue to check-in from time to time - while I enjoy my mom for a while longer!God bless you as caregivers and God bless your loved ones with cancer - May you always see the blessings He has already given you...Jamie in GA  http://www.cancercompass.com/message-board/message/all,23809,0.htm JamiefromGA Tue, 06 May 2008 00:00:00 GMT my mum passed away yesterday, monday 5th may. i visited this site every so many  months and read all sad and lovely stories.thankyou for all the replies. she was my best friend a grandmother of 4 young ones and a carer for my father,god nos why they took her now she lived for her family, wish all you guys the best if luck as its so so hard but theres always a positive x http://www.cancercompass.com/message-board/message/all,23791,0.htm distraught-bile duct canc Tue, 06 May 2008 00:00:00 GMT Hi, I have not been on in awhile.  I was NVike.  I just got a new internet service with now a new screen name.My husband is doing well after the Whipple procedure in July 07, then started with chemo. and radiation.  He finished with all that in March,08.  He just stated going back to work part time.  Doing good. This Thr. he goes for a PET scan, hopefully no cancer. I am looking for bettyg. Her husband is going through the same thing my husband went through.  http://www.cancercompass.com/message-board/message/all,23779,0.htm nchills Mon, 05 May 2008 00:00:00 GMT my mom has klatskins tumors (stage 4) she had an issue where she had fluid extend her stomach and was in the hospital because her doctor wouldnt drain it. Needless to say they did drain her when she went to the hospital because she couldn't breath. Now, a few months later the cancer seems to have the breaks on it however she suffers from depression she is convinced eatting will cause her to fill with fluid again although psychologists, nurses, and doctors have said otherwise. She is down to about 100lbs and getting her to eat is a daily struggle. Has anyone else had this problem? Any suggestions for some form of motivation anyone else has used? Eventually their going to stop chemo because of the weight loss we keep tellig her the cancer isn't what is going to kill her at this point http://www.cancercompass.com/message-board/message/all,23686,0.htm KK345 Fri, 02 May 2008 00:00:00 GMT What is the different between radioisotopes and SIR-Spheres? http://www.cancercompass.com/message-board/message/all,23577,0.htm emerginglife Wed, 30 Apr 2008 00:00:00 GMT My sister is getting ready to receive this therapy.  I understand what it does but what side effects are associated it with it?  How long does it take, and what is the follow up procedure after the treatment? Thanks, Brenda http://www.cancercompass.com/message-board/message/all,23576,0.htm emerginglife Wed, 30 Apr 2008 00:00:00 GMT Has anyone heard of this Dr. Burzynski? http://www.cancercompass.com/message-board/message/all,23339,0.htm Teresa100 Wed, 23 Apr 2008 00:00:00 GMT Does anyone have any experience with pinpoint radiation for bile duct tumors? What is its effectiveness in prolonging life? What are the side effects? My sister has a pretty severe klatskins and is not really a candidate for chemo. Thanks for your listening eyes. http://www.cancercompass.com/message-board/message/all,23097,0.htm Bayla Tue, 15 Apr 2008 00:00:00 GMT Mid february  my wife was looking real yellow and went to hospital for a ERCP to put a stent in to clear a bile duct blockage. The following day she had Post ERCP pancretitis which apparantly as we discovered later is not an unusal outcome. After 6 days of nil by mouth, then several xrays and MRI we were told she had a 1 cm tumor in the upper bile duct (refered to as intrahepatic) and she was refered to a different hospital. The stent wasn't working so this was taken out, by ERCP, and  PTC was done, inserting a drain in through the side and into the bile duct by going through the liver and into the bile duct from the top. This time she had a metal stent instead of the plastic one. Now after nearly 6 weeks we are waiting for a hemihepatectomy (removal of the bile duct and 1/2 of the liver). We have read all the web literature about the survival rates, sucess or lack of re chemotherapy etc, etc but overall are still trying to get to grips with the fact this has come on reasonably fast. Laproscopic surgery shows all clean and a suitable canditate for surgery but two facts we still cannot find, is a 1cm tumor a large or small one and what is the rate of growth of a tumor of this nature. With all the reading I have done, we are still not sure if this is a Klatskins tumor and the doctors haven't yet confirmed it. As we are from New Zealand, we are dependant on the public health system finding a gap in the surgery list so "hopeful" of a operation in 2-4 weeks. Any comments appreciated.   http://www.cancercompass.com/message-board/message/all,23029,0.htm Lewis Mon, 14 Apr 2008 00:00:00 GMT Does anyone have experience with a rather new therapy against cancer, called dendritic cell therapy?It seems that a Dutch doctor, started experimenting with this possibility to increase the defence system of your body and however this is disputed he also seems to have made remarkable results by terminal patients. However, I cannot find that he also cured a Klatskin cancer.I appreciate information from anyone who knows more about this therapy.Iris (the Netherlands). http://www.cancercompass.com/message-board/message/all,22981,0.htm Flower1 Sat, 12 Apr 2008 00:00:00 GMT In Dec 2007 my father was diagnosed with Bile Duct Cancer. He was really sick uo until 2 weeks ago, he's stronger than ever. He has been seeing the Oncologist and she says they are not going to give him any treatment and we dont understand why? Its like they have just given up. We are totally confussed and upset. We are in Canada and have asked the Dr's if we should goes to the U.S. for a second opionion and they say no its not worth it. We dont like their "bed side manor" this is my dad's life on the line its not a cold. Does anyone have any advice or a re their any Bile Duct Cancer survivors or people who have lived for more than 2-4 years?? Please help. We pray for him everyday. Also he is only 60 years old. http://www.cancercompass.com/message-board/message/all,22610,0.htm praying75 Wed, 02 Apr 2008 00:00:00 GMT My husband has been diagnosed with bile duct cancer.Last year March 2007 my husband hand a stint  placed in the bile duct due to an itching problem.  4 days later I rushed him to the hospital only to find the stint had plugged up and poisoned his entire body.  He was in critical care unit for 20 days and his kidneys shut down so had to have dialysis and also got herpes all over his face, had to be intubated  due to a blood clot in this throat.  He has had to have the stints replace every 3 months and now this last time ,( Feb)  they found a tumor just outside the bile duct and the head of the pancreas. The doctor said he has to have the whipple prodedure.  They did a CT scan but it did not show the tumor.  We have an appointment with the doctor on the 9th.  Our surgeon want to send us to Denver to the University hospital.  Should we be looking elsewhere?  Our insurance is a HMO so we can't go out of state.  Does anyone know if this is still the early stage if they want to operate?  Should he be following a special diet?  He is feeling well, get tired but can still go out to the fields and take care of his cows.Help   I need some info.      http://www.cancercompass.com/message-board/message/all,22509,0.htm Slushy Sun, 30 Mar 2008 00:00:00 GMT My husband has been diagnosed with bile duct cancer.  Is there anyone that has had the whipple procedure.  I would like to know the success rate and what the complications are. http://www.cancercompass.com/message-board/message/all,22458,0.htm Slushy Fri, 28 Mar 2008 00:00:00 GMT Hi, everyoneI just discovered this forum today in my search for alternatives and support in my Dad´s situation.He´s 60 , always healthy untill last May, when he was diagnosed with a carcinoma of the papila of Vater. He was icteric and pruritic due to the obstruction (less thamn 2cm) in the biliary duct. He was Immediatly proposed a whipple procedure. The surgery was certainly a hard time for everyone with all those tubes and doubts, waiting for the pathology. So then , already with my dad home, with quite a few pounds less but doing very well, digesting well.... the patology came saying that the mass was a vater papila adenocarcinoma in a inicial stage, with no afection of lymph nodes or surrounding structures. It was hipothysed that we had reached a possible clinical cure.There was no treatment after this day. The disppointment came 2 weeks ago when in the follow up analysis it showed up an increased tumoral marker. He was scanned immediatly and they says there was a tinny shadow in the same zone( does this zone still exists?). Doctors told us it would be useluss to do surgery again due to the malignancy of the tumour and maybe they woul do nothing due to the bad prognosis of the situation. I can´t accept doing nothing, if you understand me!! He´s booked for a PET next monday to detect hot spots of malignancy next monday. After that i would like to go for a second opinion. Can you advise me some expert or hospital. I do live, and also my dad in Portugal, but I would arrange anything for a bit of hope and time.thank you very muchsara http://www.cancercompass.com/message-board/message/all,22455,0.htm vaterhelp Fri, 28 Mar 2008 00:00:00 GMT My sister was just diagnosed with Stage IV Bile Duct Cancer that has metastasized to her rib bone, spine, hip bone and lymph nodes.  I have never dealt with cancer in my life and have no clue what we should do.  She is headed to the Mayo Clinic on Monday and they are going to see her. Has anyone dealt with this at this stage and what should I expect.  Or any advice? http://www.cancercompass.com/message-board/message/all,22395,0.htm Teresa100 Thu, 27 Mar 2008 00:00:00 GMT Hi everyone,My name is Cindy and my father was diagnosed with Bile duct cancer in June 2006. His doctor has just informed us that he is at the end of his ropes. I am trying to find out if anyone  knows about any successful stories provided from The Cancer Treatment Center? Also, if any one know if he has a liver transplant will that cure the cancer? At this moment we know that the cancer hasn't spread. But he has a bad infection due to one of his drainage bags that became clogged.He is on the transplant list but the doctors are hesitant. He is one of the top 10 to receive it. I just want to make sure if his infection clears that having a transplant will cure this cancer.                                                       Thank you,                                                      Keeping faith http://www.cancercompass.com/message-board/message/all,22309,0.htm Keeping Faith Mon, 24 Mar 2008 00:00:00 GMT I need advice please.  My mom is undergoing chemo for stage 4 Klatskin tumor met to liver & lymphnodes and is taking Oxycontin for pain when needed.  She was also prescribed Lorazepam for anxiety as needed.  She has only taken a few of these so far but when I was on drugs.com it states not to use it if severe liver problems.  Shouldn't this cancer be considered "severe..." and maybe not prescribed or taken?  I don't want to knowingly give her something I think may adversely affect her.  What possible drugs could be used in her case as a substitute?  Mild depression on occasion, stomach pain and weakness in legs are her only other side effects.  And loss of appetite for obvious reasons.  THANK YOU FOR ANY ADVICE YOU CAN OFFER!Jamie in GA http://www.cancercompass.com/message-board/message/all,22281,0.htm JamiefromGA Sun, 23 Mar 2008 00:00:00 GMT On June 9th of 2005 the VA in Indianapolis told my husband and myself that he might have cancer. on July 31st they told us that it was bile duct cancer. He had sugery on Aug. 16th and Died in the VA on Aug 19th. The death wasn't the bile duct it's self it was due to the VA letting him bleed to death. I have contatected a lady that got the award for her husband for Bile duct from the VA. It was a deal where the VA didn't know if he had cancer or not so they say and then when they did confirm it it came from the Indianapolis IU hospital. Now that I think back the VA knew that he had cancer but didn't want to acknolege it. I have an appeal in and will keep on top of it till I have no resorces to fight with.  http://www.cancercompass.com/message-board/message/all,22107,0.htm nannapat Tue, 18 Mar 2008 00:00:00 GMT Hello everyone my name is lily and i have a husband with bile duct cancer since march 9,2008 first diagnosed had his first surgery which was bile duct reconstruction then had gemzar for about 3months but was vomiting and had to go back to hospital found tumor in stomach and they did a whipple surgery in august and said they removed everything they could see including in his lymphnodes that was 14 hour surgery he just turned 40 on jan,5 2008 and his last chemo which was folfox was jan 29 and he had been getting sick again in and out of hospital in pain and put bilalary drains so he now has 2 bags for the bile to drain he is still jaundice and was on strong antiobiotics went to doctor on march 10 and they told him nothing is working and that they were just treating the symptoms and not the problem so they decided to stop chemo and told him about hospice and he said he is not ready for that yet so we are trusting in the lord and church is praying for him and pray that he could stay around longer he eats very little and trys to drink he lost another 8lbs but he is very sleepy but he is holding on very well with the help of the lord i hope this can encourage all of you to say do not give up you all keep fighting i just thought i would share a little of our story any one have any questions feel free to post and i will answer. Lily    http://www.cancercompass.com/message-board/message/all,21973,0.htm mistyblu97 Thu, 13 Mar 2008 00:00:00 GMT Everything we've read and been told tells us that this is a rare cancer... if that's the case - does it seem unusual to anyone that at least 3 people within a 10 block radius in a town of 1400 people would come down with these type of tumors?  Has anyone else heard or experienced this type of frequency??There seem to be an extraordinary amount of cancers for such a small town... and not just Cholangiocarcinoma.  In my family alone, my mother is fighting her second cancer (Bone; first time was Breast Cancer 25 years ago), my dad was just diagnosed with Cholangiocarcinoma and I had Leukemia (ALL) 23 years ago.Dad has his first treatment today... actually in about 30 minutes or so.  He'll be taking Gemzar too (seems like that is one of the drugs of choice per other posts I've read).  We haven't been given much hope for him... but I'm still praying for a miracle. http://www.cancercompass.com/message-board/message/all,21955,0.htm DWsLittleGirl Thu, 13 Mar 2008 00:00:00 GMT My father, who is 67, had a Whipple's operation in the UK in December, which was pronounced 'a success'. His surgeon managed to remove the bile duct cancer and we were very optimistic. Unfortunately, my dad is having problems eating. Some days he will eat nothing at all. He is very weak. My brother had to carry him to bed yesterday. He says he is anxious about eating as it brings on severe stomach pains and he is often, but not always, sick as a result. He now weighs 8 stone 6 pounds and this is dropping. The doctors have now said that he is too weak to withstand the chemotherapy he was to have undergone. My brother rang yesterday to say that he thinks that he may not have long to live. I just don't believe that in 2008, someone has to die of malnutrition, especially as the cancer has been cut away. Does anyone out there have experience of such dramatic weight loss, stomach pains and lack of appetite? What foods did people find palatable, and can anyone recommend a diet that would help in building my father up?Many thankns for reading my post,Vicki http://www.cancercompass.com/message-board/message/all,21839,0.htm VickiR Mon, 10 Mar 2008 00:00:00 GMT