CancerCompass message board discussion started by Elizabeth Ann on 8/23/2005 http://www.cancercompass.com/message-board/message/all,2803,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, my name is Elizabeth -- my brother was just diagnosed with cholangiocarcinoma - he's 48. I don't know too much about this cancer except it's rare and spreads fast. I feel so helpless -- his doctor prescribed my brother some chemotherapy medication (oral) but his doctor told us that this is not a cure that the chemo medication will or might slow down the growth but there is nothing else to be done. I'm having a hard time accepting this... there has to be some type of procedure out there that can help. If anyone could help me with some information, I would deeply appreciate it. As you all know, this is very hard to handle. Again; thanks for any info I can get. Elizabeth Ann Tue, 23 Aug 2005 00:00:00 GMT Hello Elizabeth: My husband was diagnosed with Cholagiocarcinoma in Dec 04, he is 56 yrs old. It had also matastazised to his spine and pelvic, we have learned that this cancer is at stage 4 by the time it show any symptoms, He had major back surgery in Dec 20, but he was home for Christmas and sat at the table for dinner, this in itself is incredible. We went to 3 different hospitals and the diagnoses was the same. He was given radiation and chemo (oral). The chemo did not work, so now he is in at trail test which is not chemo. He is doing ok except for the pain in his back. He has had 4 stent replacement in 10 months, the last one was a metal stent which is working much better than plastic. The last radiation treatment he had for the cancer on the pelvic bone has given him a great deal of pain which we are trying to control with breakthrough medication. The prognosis's for this type of cancer is not good, but do not give up, there are always new drugs and treatments coming that will hopefully help. We talk and pray and take each day as a bonus. We had our oldest son's wedding in July and we did not think he would make it, but he did and looked wonderful that day. We always try to look ahead with positive thinking and planning for our future. Never give up there is always hope. Keep him thinking positve this may be 90% of the battle. Good luck and God bless Helena Thu, 25 Aug 2005 00:00:00 GMT Hi Elizabeth- My father was recently diagnosed with cholangio also. His turned out to be inoperable which was devasting to the entire family. We are actually at UCLA medical center in California right now so he can have stent put in to drain his bile because his duct is blocked by the tumor. There are many options(not all have proven effective) in treating cholangio. I saw a message from Jeff S. on this message board by going to Google and typing "cholangiocarcinoma treatments at UCLA" I think it was on page 2. He said that he has compiled a month's worth of internet research that he will share with anyone who is interested. I am still trying to contact him regarding his info. There are a few things that are keeping us strong-doctor's are human, they make mistakes, they don't know everything, different doctors have different treatment ideas, there are many different types of chemo- if one does not work, try another, if chemo/radiation doesn't work, there are clinical trials, prayer works and miracles do happen. Cholangio is a very serious type of cancer with a low survival rate in most, but if you look at the different message boards, you'll see there are many people still going strong after having this disease for quite a while. I hope this helps and my family's prayers are with yours. Elizabeth N. Elizabeth n. Tue, 30 Aug 2005 00:00:00 GMT If you send me an email address, I will send you all my research on cholangio and pancreatic, which are close cousins and often treated with the same chemo. You can contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. My wife is being treated in Brooklyn with 5 different drugs simultaneously. So far, so good. Hang in there. Jeff S. Jeff_s Tue, 30 Aug 2005 00:00:00 GMT Hi Elizabeth: I was diagnosed in May, 2004 with bile duct cancer. After being given the news that it was inoperable by a Boston hospital and confirmed by an oncologist, I was lucky enough to be given a surgeon's name from Lahey Clinic in Burlington, MA. This area of the anatomy is his forte and he operated on me in June, 2004. I lost one lobe and half of the other at that time. By September, the remaining lobe had gone back and was healthy. I celebrated my first annual check up with great numbers. I was told that there really is no chemo or radiation treatment specifically for bile duct cancer. They use the pancreatic cancer treatment as a model. My surgeon is well known for his procedures and has been doing it for a long time. He is also the pioneers for liver transplants in this area. I am so lucky to have had him. I am 54 years old and have been able to see three more grandkids born and a fourth on his way. I thank "God" every day that I am able to swing my feet over the edge of the bed. I had alot of people praying for me, and keeping my thoughts positive. It is very important to do. If I can help in any way to you or anyone else, please let me know. My prayers are with you and your family. Suzieb Thu, 01 Sep 2005 00:00:00 GMT Hello First off I am very sorry to read this. I havent been on this site in a while. I know all to well what you are going through. I have writen on this site before. My wife (34) had Cholangiocarcinoma. We discovered it while she was pregant with or son last 2-17-05. I lost her on 7-9-05. Make sure you have got lots of information as I can see you are trying to do. If they can remove the tumor and chemo treatments he has better chances. But there is a chance it could come back. If that is not he case as with my wife all I can say is prepare yourself and family. I made it my job to make sure that my wife had good food and little snacks. I found that homemade protein shakes, with weightgain powder and fruit were good to keep the weight on. I blended it with Kerns juice. Chemo makes you not want to eat so small easy to swallow meals helped her. But the cancer itself is a protein eating cancer. He will lose weight even if you are doing everything. So I really tried to made meals and shakes that had lots of protein. Above all I made sure that she had a goodtime and stayed positive. I wanted to make sure that she had time with me and our son. Our goals, which I think are extremely important to make, was to prolong her life as along as she was comfortable. For us we felt we could get a year cause she was so young. That wasnt the case. But her being at our sons baptism was a goal. And SHE DID IT! Another goal was to make sure that everything that needed to be done was finished and writen down way before her time came. We also didnt want to be in hosptials cause we spent so much time there. Home is such a better place to be. What type of Chemo is he on? Has it spread? With my wife we knew she had it but we were limited in what we could do as far as tests. So After his birth a cat scan had shown it had spread other places so surgery was out. Again i am sorry to read this and dont want to paint a grim picture but you need to know what to expect. Doctors dont always tell you how or what to expect. You must be optimistic but still face reality. That is the only way I made it. Respond if you need more information. Witniss1st Sun, 04 Sep 2005 00:00:00 GMT I lost my dad on the 21 August 2005. He started feeling ill in June this year & developed jaundice, which the consultant first thought was being caused by a gall stone blocking his bile duct. After many many weeks of scans and tests, they said it was cancer. They said the cancer had spread to his bones, liver, lymph glands and stomache etc, they could not cure him but when they found the main cancer they maybe be able to treat. They thought at first it was prostate, then pancreas & then finally bile duct. It was too late to do anything for my dad. After three weeks in hospital, he was allowed home. He arrived on a Monday and died the Sunday of that week, with his family by his side. He was 56. I miss him so much and feel so angry that it was diagnosed earlier, but they said he hadn't ignored any symptoms and that it could have been developing for upto 2 years. My dad was a dairy farmer. jo Frog Tue, 06 Sep 2005 00:00:00 GMT Joanne I feel your pain. I read your post and it was almost the same as my wife. I posted or story a few days ago. They thought it wasgallstones as well. They felt it couldnt be Cholangiocarcinoma cause she was only 34 years old. But they ran what tests the could and nothing. THey placed a stent in to drain the bile duct 2 times. The second time they noticed some bleeding in the area. Which raised the questions. Until we had a Ultrasound ERCP done which they were able to see and take a sample we werent sure abou it. Then it was wait and see cause she was expecting our son in April. He can March as planned for a early C seciton she we could work on her. But to late. She passed on 7-9-05. So a terrible nasty cancer. Just takes everything you have so fast. My wife was teacher as I am as well. However lots of her family are Dairy farmers as well. Witniss1st Tue, 06 Sep 2005 00:00:00 GMT I was so sorry to read about you losing your wife so young, I myself am 35. I also have a son, he's 8 years old and is called Jonathan, the name Jonathan means "Gift from God" and he really is. He has been so supportive to my family whilst my dad was ill, and after he died. All you can do is enjoy your son and look to your future together. Take Care. Joanne jo Frog Sun, 11 Sep 2005 00:00:00 GMT Hi Yeah I look at my son everyday anf think about my wife. Today we went and did 6 month pictures for him. It was great but I found myself thinking about her as we finished them. You speak about names. We named our son Joseph cause we felt that the religous connection would help us. Everyday is hard. Now even more cause it is football season and my wife loved HS and Pro football. Witniss1st Sun, 11 Sep 2005 00:00:00 GMT Hello everyone, I have posted on this section and on the gallbladder cancer section. My wife, 47, has stage IV, diagnosed in April. She is on a clinical trial of rebeccamycin and oxaliplatin at University Hospitals in Cleveland, Ohio. Her doctor is Asfin Dowlati. Only one round but my wife has improved dramatically. The doctor had one other gallbladder cancer patient on this study and he said they responded also. See my other posts for more info. My email is wamba138 at hotmail dot com if you want more info. Good luck and keep fighting!!! Rick Wamba138 Tue, 20 Sep 2005 00:00:00 GMT Who was the doctor? Wamba138 Wed, 12 Oct 2005 00:00:00 GMT My doctor was from Lahey Clinic in Burlington Massachusetts. Dr. Roger Jenkins. He has been named by the American Liver Foundation as one of the top surgeons. If you need any other information, please feel free to email me. My prayers are with you Suzieb Fri, 14 Oct 2005 00:00:00 GMT Hi Elizabeth, Mayo Clinic in Rochester, MN has a program of liver transplant for cholangiocarcinoma. It is the only institution in the country which has an ongoing study and evaluation of liver transplant for cholangiocarcinoma. Their 5-year survival is about 80-85%. Don't feel disappointed is you are told that the cancer is inoperable because that is the nature of cholangiocarcinoma at the time of diagnosis. As long as it does not spread outside of the liver or bile duct and gall bladder system, your brother may be a candidate. You may also like to check with Mayo Clinic in Florida and Arizona. Their waiting period for transplant may be shorter. Good luck. Raeder Sun, 23 Oct 2005 00:00:00 GMT hi suzieb; i just read your message about the lahee clinic. my mother has bile duct cancer, the doctors tell us that it could be cholangio but we are not sure until she goes into surgery. i spoke with dr. Jenkins from lahee today, he was recommended to us from our surgeon (to go to for a 2nd opinion), now we are torn. We really liked Dr. Jenkins and were impressed with his credentials. Can you tell me your experience with Dr.Jenkins and also how are you doing now? thanks and God Bless!! polina Polina Tue, 22 Nov 2005 00:00:00 GMT Sue, I came across your posting this evening, and wish you continued success in your treatments and your recovery. After reading your post, I was reassured a bit, as my uncle was just diagnosed with Bile Duct Cancer, and is currently under care at Beth Israel in Boston. Unfortunately, he was also told that it is inoperable, but after reading your post, my family is in the process of contacting Dr. Jenkins at the Lahey Clinic in the hopes that new avenues may be looked at. I thank you. -Eric Shadow2700 Sat, 26 Nov 2005 00:00:00 GMT Eric: I know how hard it is when you are going through the process. The main thing for your family to remember is that if one door gets closed to you, another one will open. I will pray that Dr. Jenkins is able to help you all. I am due to see him 12/6 as my 1.5 year check up. I had labs done last month and they were still good. Believe me, if Dr. Jenkins can do anything, he will. He is the most caring physician I know. He was just recently honored by the American Liver Foundation for his work. Please keep me posted. My heartful prayers are with you. Suzieb Wed, 30 Nov 2005 00:00:00 GMT Jeff, Could you please send me the info you were referring to about possibly effective treatments for bile duct cancer? My 79 year old father has just been diagnosed with it. We are going to try to seek a specialist at UCLA. We did not yet know what his prognosis is, but the doctors do tell us, it appears to have metasticized to h is lungs so this makes surgery virtually impossible. Any help would sure be appreciated. Thanks and God bless.My e-mail address is : --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Freedomconcern Thu, 01 Dec 2005 00:00:00 GMT Jeff, I would love to get a copy of the research you did. My wife was diagnosed on 10-21-05 with Colangiocarcinoma. We found out two week's ago that it's stage 4 from the laproscopic surgery and surgery to remove it is out. She just turned 37 and we have three boys under 6. She will get her third round of Chemo next week. Thanks for being such a good resource!! God Bless!! Chris m Fri, 02 Dec 2005 00:00:00 GMT HI SuzieB, I am so glad to hear that you have been successfully fighting your battle with bile duct cancer. My father was recently diagnosed and is 79 years old. It was a total shock for us considering the fact that he has been running 3-4 miles a day, and eating healthy for most of his life. From reading the message boards and your letter, it sounds that some treatments do help, but the doctors say my dads cancer has already metasticized to his lungs ( they have found a few nodules there) and therefore he is an unlikely candidate for surgery. Had your cancer travelled to other organs or areas when you received treatment , or was it isolated to the bile duct? Any help from anyone, would really help me. Thank you and good luck to you. Linda Freedomconcern Fri, 02 Dec 2005 00:00:00 GMT Linda: I am truly sorry to hear about your Dad. I wish someone out there (physician or researcher) could explain to all of us why we get this type of cancer. It sounds like your dad did everything right -- eating and exercising. I think for me, though I gave up red meats over 10 years ago, I did not always eat healthy. I also have alot of stress in my life (type A personality) which does not help at all. However, my cancer had only been in the bile duct. So when I left the hospital I only had a 1/4 of a liver and was minus a few lymph nodes which my doctor felt he did not want to leave in just in case. I also lost my gallbladder and a tumor (non cancerous) behind that. So I was very fortunate. What are the doctors suggesting for your Dad now? Anything I can do to help, I would be happy to try to do. Please know that my prayers are with you all as you go through this process. Please tell him to keep a positive attitude and keep laughing. Laughter is a great medicine. Pls keep me posted. Sue Suzieb Fri, 02 Dec 2005 00:00:00 GMT I would be happy to share with you what I have, but the guidelines on this site do not permit me to post my email address or ask for yours so that I can send it to you. The collection is up to about 6Mb now, so I usually send it to people in 2 or 3 batches. More important than my research is a recommendation. Go see Howard Bruckner at the Lutheran Medical Center in Brooklyn, N.Y. He is very hard to get a hold of and forget about return phone calls until you become an established patient. He is just overloaded. But he is busy for a reason. He unquestionably saved my wife's life. She was diagnosed in March of this year. Sloan was out of ideas and she, like your wife, was stage 4 and inoperable. She has been taking a complex regimen of chemo drugs since May. The tumor is down 40% and her liver functions are back to normal. The chemo is taxing, but it seems to be working. Stay with it until you get through to him. He is a kind and capable man. If you want to try to post an address where I can send my research, maybe they will let it through. Have faith, read everything you can and never assume that a general oncologist can deal with cholangiocarcinoma. The inititial reading you do will scare and depress you. The disease has a nasty history. But 4 of the 6 drugs my wife now takes were unavailable 5 years ago. The literature is just now recording the imporvement in prognosis. Also, this is often a disease of older people and is often diagnosed even later than your wife's was. So the survival times reported in the literature are much worse than would probably apply to a 37 year-old. If you treat this agressively, as Bruckner will if you get in to see him, your wife may well be attending your 3 boys' high school graduations, notwithstanding the statistics. Good Luck. Jeff Jeff_s Sun, 04 Dec 2005 00:00:00 GMT Jeff, Thanks for the message. Sounds like you are very happy wih Dr. Bruckner. We are in San Diego and are being treated at Cedars in LA now. She is having her 3 round of Chemo this week. She is on Gemzar and Oxiplation. You can send me the info at mccreach at yahoo dot c-- I hope your wife is doing great!! God Bless!! -Chris Chris m Sun, 04 Dec 2005 00:00:00 GMT Dear Jeff S. I had a consult in Brooklyn with the doctor who developed the 5 drug protocol. I am seriously considering going with his protocol for treatment of a second recurrence. Are you still as enthusiastic about it as you were in August? All my best to your wife. It's a nasty disease. Abigail5 Abigail5 Tue, 31 Jan 2006 00:00:00 GMT I am pleased to hear from someone like you Sue, who is doing well. My wife Dawn had a resection done on Jan 12th. Her surgeon does not recommend Chemo or radiation treatments as a follow up. We feel compelled to ask an oncologist or two what they think should be done. My wife's tumor was small, margins were negative and lymphs nodes negative. Just wonder if we should do more? God Bless, Richard Evan14 Wed, 01 Feb 2006 00:00:00 GMT I am wondering if the oncolocgist is Howard Bruckner. He is in Brooklyn and uses these complex regimens. The answer to your question is this: we still think the world of him and trust him fully. However, after a great 8 month run, the chemo seems to have stopped working for us. We are trying some other things, but we still think Bruckner is the best. Good Luck. Jeff Jeff_s Wed, 01 Feb 2006 00:00:00 GMT It sounds like you have a good chance of having gotten it all without needing to do follow up (also known as adjuvant) chemotherapy; but do you feel like betting your wife's life on it? I have done a lot of reading on this. The majority of studies (though not all) support the idea of adjuvant therapy improving your chances of avoiding recurrence. Chemo is a big burden on the patient, and I would not go into it lightly, but this is a life and death issue. I would suggest you seriously consider adjuvant chemo. You will find good literature on the NIH (PUBMED.COM) site. Put cholangiocarcinoma and adjuvant into the search window, or maybe liver cancer and adjuvant. Best of luck with this difficult disease. Jeff Jeff_s Wed, 01 Feb 2006 00:00:00 GMT Dear Jeff_s Thank you for your reply. I am sorry to hear about your wife. The oncologist is Howard Bruckner. DO you mind telling me what else you are trying. Have you considered Cyberknife. I went for a consult at Sinai Hospital in Baltimore. This is another alternative I am considering. Abigail5 Thu, 02 Feb 2006 00:00:00 GMT A more recent development in this area is the Novalis Shaped Beam system. I was very interested in this but was told by 2 centers that these tumors are not amenable to that treatment because it requires very precise imaging, which the location of a Klatskin tumor like my wife has makes very difficult. There is also Therasphere radiotherapy. It involves the injection of microscopic radioactive beads directly into the vascular supply of the tumor. They radiate the tumor from the inside out for about 4 days and then go inert. Success at getting at least some significant reduction in tumor size is up aroung 75%. See Northwestern memorial Hospital, Dr. Riad Salem, as a possible place for that. Radiofrequency ablation (done at the same place) is also a potential option. Consider also Steven Strasberg at Washington University in St. Louis. Good Luck. Jeff S. Jeff_s Sat, 04 Feb 2006 00:00:00 GMT Hi Jeff - Could you please send me your cholangio and panrcreatic research? My husband, age 56, was just diagnosed with cholangio. My email address is joni at radiks dot net. Thank you so much. Joani Sun, 05 Feb 2006 00:00:00 GMT Dear Jeff, We live in Cleveland, Ohio. Partially due to your emails on Bruckner, we went to see him Thursday, 3/16. We plan on starting treatment with him at the end of the month. My wife has been living with cholangiocarcinoma since last January. We have been under the care of Dr. Dowlati at the Ireland Cancer Center. A clinical trial of rebeccamycin and oxaliplatin worked for about six months for my wife. Since then we have been on Gemazar then Taxotere. My wife is getting worse now. But she is still strong enough to try Bruckner's regime. We will let everyone know how it goes. Rick Wamba138 Sat, 18 Mar 2006 00:00:00 GMT If what you are facing is progression of one or two discrete tumors rather than generalized metastases, you may want to consider localized radiation treatment. Dr. Riad Salem at Northwestern Memorial in Chicago is a leader in Therasphere brachytherapy. Dr. Bruckner is familiar with him and believes he is good. My wife just underwent the treatment and we are very satisfied with their program. Therasphere involves injecting microscopic radioactive particles directly into the blood supply of the tumor. The particles lodge in the capillaries of the tumor and radiate at a high level for about 10 days, then go inert. The advantage over conventional external radiation is that the intensity within the tumor is very high, but the collateral damage to good tissue is very low. This is not a substitute for systemic chemotherapy for control of metastatic disease, but Dr. Bruckner will tell you that there are 3 targets for chemo: the big tumors, the little nodules that are the first visible evidence of metastases and the microscopic tumors in the making. Systemic chemo may be effective against any of the three without necessarily affecting the others. In other words, the fact that a large tumor is progressing does not mean that your chemotherapy is not slowing the metastatic spread. Going after the large tumor(s) with other methods, such as Therasphere, radiofrequency ablation or photodynamic therapy while you continue chemo may be a good idea. I suggest you run it by Dr. Bruckner. He will give you the right advice. Good Luck. Jeff_S. Jeff_s Sun, 19 Mar 2006 00:00:00 GMT Linda: any update on your dad? I was informed on 1/23/06 that I had another tumor in the bile duct that had been disconnected during the first surgery. The surgeon called in a drop down cell. It was near the head of the pancreas so I just underwent a modified whipple procedure on 2/6/06. Everything went well as far as surgery and I came home with a feed tube and a couple other drains. I just got rid of the tube a week ago. I am not scheduled to see my surgeon until June. However, I have developed a virus which has taken its toll on me with the coughing, congestion, etc. Outside of that I feel good and the path report said it was contained so at the present time I am not scheduled for chemo or radiation. That's the update on me...but I have not seen anything on your dad. Hope he is doing well. Please let me know Suzieb Suzieb Sat, 25 Mar 2006 00:00:00 GMT Hello Jeff and all, Our treatment by Bruckner was a disaster. The one and only treatment wiped out my wife's bone marrow. Her paltlets are at 9000 and not coming back. Now we cannot have any more chemo. Granted my wife was very sick but now we have no options to fight any further. No one seems to know what happened. I would caution everyone thinking of this treatment to be wary. Wamba138 Sun, 23 Apr 2006 00:00:00 GMT Hi, My Father was just diagnosed with Cholangiocarcinoma, he is 61. He had a Whipple surgery and after his surgery he was told that this was the type of cancer he had. The doctors told him that they caught it but that they were not sure of the stage of the cancer as there was a gland that was removed which had some abnormal cells . He was told that he did not need to have chemo or radiation only that he had to have blood work and CT scans every three months. He and my mother are seeing a councilor and trying to deal with this but they are having a very tough time (which I know all of you are having as well). I feel very helpless and would appreciate any information any one may offer. We understand that the chance of reoccurring is high, I know that he would appreciate speaking to someone going through the same thing. Allthree Fri, 28 Apr 2006 00:00:00 GMT Jeff, If you wouldn't mind sending me your information you have collected I would appreciate it. My husbands best-friend was just told he has this cancer. They live in Mass. so it isn't a long drive to get to New York or Boston to see if there is anything that can be done. They have been told by a GP it is not operable. They are heading to a specialist this coming week but, if they had any information ahead of time to look over it may help. This has been a HUGE blow to a family that is already dealing with more than their share of medical issues with other family memebers his wife included. I am at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if this makes it to you, Thanks for all your hard work on this issue. Cathy Cathy623 Sat, 27 May 2006 00:00:00 GMT Hi Jeff, I am intrested in receiving your information that you have collected regarding the disease. could you please either post it or send it to me. Thanks Melanie --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Allthree Thu, 01 Jun 2006 00:00:00 GMT Melanie, I am afraid that it would not be practical to post this information - there is just too much of it. But the editing of your email address seems to be done autmatically when you post something with an "at" symbol or a dot com. Try spelling out those symbols, as I just did. Jeff Jeff_s Fri, 02 Jun 2006 00:00:00 GMT Sorry it took a while to reply to this - I do not check this account more than every couple of weeks. Try telling me your address by spelling out the "at" symbol and the "dot" before net or com. If that workd, I will be happy to send you what I have. Jeff Jeff_s Fri, 02 Jun 2006 00:00:00 GMT I am so sorry to hear of your bad experience with Bruckner. My wife had very good luck with him and we have a lot of treatments under the belt - over 28 now. I sincerly hope your wifes platelets recover and she can keep up the fight. Jeff Jeff_s Fri, 02 Jun 2006 00:00:00 GMT Thanks for your reply, any information you have can be sent to: --- 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 have obtained a second opinnion regarding my father's condition and it stated that the cancer began in another area (pancreas). Two different teams of doctors cannot agree on the place of orrigin.............and we are wondering how this will affect my father and his outcom. thank you. Allthree Mon, 19 Jun 2006 00:00:00 GMT Dear Allthree, You are in over my head here, but I will venture an opinion based on what I know. All the gastric cancers have similarities and differences, but the similarities may be more important when it comes to treatment. So far as I know, the therapies that work well for pancreatic cancer seem to be effective for cholangiocarcinoma and vice versa, except that it is important to realize that no conventional treatment is totally effective for either of them. It is a matter of buying time. So it may not be critical to know whether the point of origin is the pancreas, bile ducts, liver itself or the colon. I will send what I have. Good Luck, Jeff Jeff_s Tue, 20 Jun 2006 00:00:00 GMT Jeff, I was hoping you could send me your research.  My father recently underwent his second surgery for a recurrence of his bile duct cancer.  We were told that it could not be removed completely because of its association with the blood supply to the liver.  The tumor was about the size of a baseball and had also affected the stomach and small intestine to a small degree.  They ablated what they could but said they could not ablate the rest because of the location of the tumor and the blood supply to the liver.  He also said transplant was not an option because there would be no surgical way to remove ALL of the cancer and therefore it would flourish outside of the new liver because of the immuno-suppresant drugs.  If you have any information that might contradict this or any new information that our doctor is not aware of I would greatly appreciate it.  I would also like to see your research that other people have been posting about.  My email address is CAPerry at gmail dot com Cpfood Wed, 20 Dec 2006 00:00:00 GMT You mentioned an equivalent to SIRspheres.  I was diagnosed with cholangio in Oct 2005.  It was only seen in the liver at that stage although there were a few odd spots in the right lung.  The size and location of the mets ruled out resection so I had SIRspheres on 19th Jan 2006.  There was some pain when the spheres first "hit" the liver but that was expected and a dose of something on the table fixed me up.  Appart from throwing up orange juice the next morning there were no side effects.  CA19.9 readings fell progressively until I started a chemo course  (this looks like it was a met on the left hip - found later when I arranegd a PET scan for myself).  6 cycles of gemcitabine + cisplatin plus 20 Grays of radiation on the hip brought the CA19.9 antigen level down to the top olf normal range.  This held for 3 months then started climbing again just before Xmas.  I have just started on gemcitabine + 5FU (to avoid a build up of toxicity with cisplatin) and wait to see how that goes.The SIRspheres have shrunk the original tumour to about 25% of original size and on the PET scan it reports as being "not glucose avid".  Keithw Sat, 10 Feb 2007 00:00:00 GMT Richard:I have not been on this site for a very long time.  How is your wife doing?  I posted a new message called Good News.  I did have a second operation in 2/06 by Dr. Jenkins and now I am working on being cancer free.  We were a little concerned last February because the remaining liver had some spots but now everyone seems to agree that they are healthy liver spots showing through a fatty liver.  I pray things are going well for you both.  Please reply if you are still visiting this site.Sue Suzieb Tue, 19 Jun 2007 00:00:00 GMT Hello, my name is Sherrell. A very good friend of my mother's just announced that she has cholangiocarcinaoma. My mother told me that she has it in her liver. What i want to know is exactly what is the meaning of the word " cholangiocarcinoama"? SHERRELL Mon, 16 Jul 2007 00:00:00 GMT Hello SueDawn is doing well almost 20 months after her resection. It has not always been a smoth journey, but as of her CT scan results last week, July 2007, she is cancer free. As you also mentioned, I do not visit this site often. I stll post on cc.org and the JHH site occasionally. We will pray things continue to go well for you. Richard Evan14 Thu, 02 Aug 2007 00:00:00 GMT Cholangiocarcinoma is the medical term for cancer of the bile duct. location of the cancer on the bile duct determines whether the tumor is inthrahepatic, perihilar or distal. The location will also determine what type of surgical teratment is done if sugery is poassible. Wikipedia gives a very good explaination of cholangiocarcinoma. link - http://en.wikipedia.org/wiki/Cholangiocarcinoma Evan14 Thu, 02 Aug 2007 00:00:00 GMT Richard:Am really glad that Dawn is doing well.  I am pleased to hear that she is cancer free.  I will continue to put her in my prayers to help maintain that positive status.  Please keep me posted on her continued good health.  Take care (both of you!)SueOn 8/2/2007 Evan14 wrote:Hello SueDawn is doing well almost 20 months after her resection. It has not always been a smoth journey, but as of her CT scan results last week, July 2007, she is cancer free. As you also mentioned, I do not visit this site often. I stll post on cc.org and the JHH site occasionally. We will pray things continue to go well for you. Richard  Suzieb Sun, 05 Aug 2007 00:00:00 GMT  On 9/1/2005 Suzieb wrote:Hi Elizabeth: I was diagnosed in May, 2004 with bile duct cancer. After being given the news that it was inoperable by a Boston hospital and confirmed by an oncologist, I was lucky enough to be given a surgeon's name from Lahey Clinic in Burlington, MA. This area of the anatomy is his forte and he operated on me in June, 2004. I lost one lobe and half of the other at that time. By September, the remaining lobe had gone back and was healthy. I celebrated my first annual check up with great numbers. I was told that there really is no chemo or radiation treatment specifically for bile duct cancer. They use the pancreatic cancer treatment as a model. My surgeon is well known for his procedures and has been doing it for a long time. He is also the pioneers for liver transplants in this area. I am so lucky to have had him. I am 54 years old and have been able to see three more grandkids born and a fourth on his way. I thank "God" every day that I am able to swing my feet over the edge of the bed. I had alot of people praying for me, and keeping my thoughts positive. It is very important to do. If I can help in any way to you or anyone else, please let me know. My prayers are with you and your family.Hello,My mother was recently diagnosed with bile duct cancer and we are really frustrated. I was wondering if there was any way to get the name of the doctor that did the surgery.  I would be so thankful for any help that you can give me.  I have continually searched and prayed for some way to help my mother and then I saw your posting on the message board & I felt like it might be a glimmer of hope.  I would so appreciate your help.     rranch Sun, 10 Feb 2008 00:00:00 GMT  On 8/23/2005 Elizabeth Ann wrote:Hi, my name is Elizabeth -- my brother was just diagnosed with cholangiocarcinoma - he's 48. I don't know too much about this cancer except it's rare and spreads fast. I feel so helpless -- his doctor prescribed my brother some chemotherapy medication (oral) but his doctor told us that this is not a cure that the chemo medication will or might slow down the growth but there is nothing else to be done. I'm having a hard time accepting this... there has to be some type of procedure out there that can help. If anyone could help me with some information, I would deeply appreciate it. As you all know, this is very hard to handle. Again; thanks for any info I can get.i can relate to you Elizabeth.....my husband died very quickly when the cancer spread to the bile ducts through his liver.....and the next thing i knew ............he was gone..............just like that.  i want you to know that you've got to remain strong.......this is a cancer that kills..... though i think the chemo therapy killed my husband.....within 6 weeks of treatment.  Your in my prayers......and wish you the best. i'm here for ya...if you need to talk.take care my friend,stephie~  stephie1965 Sun, 25 May 2008 00:00:00 GMT  On 9/1/2005 Suzieb wrote:Hi Elizabeth: I was diagnosed in May, 2004 with bile duct cancer. After being given the news that it was inoperable by a Boston hospital and confirmed by an oncologist, I was lucky enough to be given a surgeon's name from Lahey Clinic in Burlington, MA. This area of the anatomy is his forte and he operated on me in June, 2004. I lost one lobe and half of the other at that time. By September, the remaining lobe had gone back and was healthy. I celebrated my first annual check up with great numbers. I was told that there really is no chemo or radiation treatment specifically for bile duct cancer. They use the pancreatic cancer treatment as a model. My surgeon is well known for his procedures and has been doing it for a long time. He is also the pioneers for liver transplants in this area. I am so lucky to have had him. I am 54 years old and have been able to see three more grandkids born and a fourth on his way. I thank "God" every day that I am able to swing my feet over the edge of the bed. I had alot of people praying for me, and keeping my thoughts positive. It is very important to do. If I can help in any way to you or anyone else, please let me know. My prayers are with you and your family.Hi Suzi,My father is exactly in the same condition. But we are in India and can't afford to go to USA for ttreatment..If you can share with me the doctor's contact in USA who operated on you, I will get in touch with the doctor and request him to speak to my doctor..hope you can understand the agony I am going through..pulling to evry bit of hope..my number is --Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- ...Kindly help... Arobinda Tue, 08 Jul 2008 00:00:00 GMT Elizabeth:They blocked out your phone number.  The doctor I went to is Roger Jenkins, Lahey Clinic, 51 Mall Road, Burlington, MA.  I am not sure if they will allow his phone number through but it is 781-744-2500.  My prayers are with you and your family.  I do know who difficult this is for you.  I only pray that the God will heal him soon.  Please keep me posted.SuzieB Suzieb Sun, 20 Jul 2008 00:00:00 GMT  On 2/4/2006 Jeff_s wrote:A more recent development in this area is the Novalis Shaped Beam system. I was very interested in this but was told by 2 centers that these tumors are not amenable to that treatment because it requires very precise imaging, which the location of a Klatskin tumor like my wife has makes very difficult. There is also Therasphere radiotherapy. It involves the injection of microscopic radioactive beads directly into the vascular supply of the tumor. They radiate the tumor from the inside out for about 4 days and then go inert. Success at getting at least some significant reduction in tumor size is up aroung 75%. See Northwestern memorial Hospital, Dr. Riad Salem, as a possible place for that. Radiofrequency ablation (done at the same place) is also a potential option. Consider also Steven Strasberg at Washington University in St. Louis. Good Luck. Jeff S.Hi.I'm a UK national who has been living and working in Thailand for most of the last 10 years. My father was recently diagnosed with chalangiocarcinoma, and has just undergone Whipples surgery a couple of weeks ago in the UK via the National Health Service. I've just returned to Thailand from visiting for a week or so, and like many people have been finding out what I can on the internet. Being in a different country also makes me feel even more determined to try and help somehow.Anyway, I came across this website after thru Google. Novalis treatment is available at Wattanosoth Hospital in Bangkok, Thailand. They list chalangiocarcinoma as one of the things Novalis can be used for. I cannot comment on the treatment or the hospital first hand. But I thought people may be interested.What I can say is that having lived here for 10 years, there are some fantastic international class hospitals in Thailand, and often to high international standards. Thailand has also put great efforts into linking tourism and medical treatments. Costs also tend to be much lower than private hospitals in the UK. As examples:- you can usually walk in and see a specialist in many fields (don't know about cancer yet) same day and for GBP 10 consultation in a leading hospital. - When my wife had our first baby we went to the number one hosital here (Bumrungrad) and all in everything cost about GBP 1,000 including 3 days in the hospital, delivery, nursery care etc. They were fantastic with top class facilities. It would cost probably 5 times that in the UK if you went private. For people looking for ideas/alternatives I hope this may be of use to at least some. When my father comes to visit us on holiday in a few months, I hope to convince him to at least go for a chek-up and second opinion. http://www.bangkokhospital.com/eng/wattanosoth_Novalis.aspx    Fletchthai Wed, 20 Aug 2008 00:00:00 GMT