CancerCompass message board discussion started by Tammym on 4/26/2005 http://www.cancercompass.com/message-board/message/all,1968,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 67 year old mother has been recently diagnosed with cancer of the bile duct. She was told that the cancer is contained in the common hepatic duct at the bottom near the pancreas, but it has not spread beyond that duct. Everything that I have read indicated that all or some of the organs below are effected as well ---liver, pancreas, stomach, gall bladder, etc. The doctor feels that surgery is an option for her --- resected and reconstructed with a loop of the small bowel. We are headed to see a doctor in Winston-Salem, NC that will possibly do the surgery. Can anyone give me some insight of what we are about to face? Tammym Tue, 26 Apr 2005 00:00:00 GMT Hi Tamm Just read your message, I was diagnosed with bile duct cancer in Dec. 2004. Had a total resection done and half of the liver removed. All the margins came back clear and so did the lymph nodes. I have to have another ct scan done the end of June, I was given a 50/50 chance. It was called a Klatskin tumor which is very rare, I pray everday that it doesnt come back, once I get 6 months to a year in I will feel more positive. The only side effects I am having right now is fevers, I am going for more tests but my family doctor thinks its an infection underneath the infection, I had problems with that ever since the operation, now that the incision is healed up there might be a pocket of infection somewhere. I hope your mother does okay, it will take quite a while to get over this kind of operation. Let me know how you make out. Jackeline Thu, 28 Apr 2005 00:00:00 GMT Thank you for responding so quickly. I will let you know what the surgeon sugguest and outcome. By the way, if I am not getting too personal, how old are you? I just want to see if your in the same age bracket as my mother. Tammym Thu, 28 Apr 2005 00:00:00 GMT Hi Tamm In answer to your question I am 56, actually I will be 57 in May. If you have anymore questions please dont hestitate to ask. I am trying to find out more about this type of cancer so keep in touch. Jackeline Fri, 29 Apr 2005 00:00:00 GMT Jacqueline, My husband (40) also had a Klatskin's tumor. He had surgery in October 2004. The surgery went well but unfortunately they didn't get clear margins. He had a combination of chemo and radiation in January hoping to get the margins but it didn't work. A new tumor started growing by February. He just started a new round of chemo in March. What I thought was intersting with your case is that my husband also has an underlying infection that they can't find (presumably from the surgery). Every time they took him off of the antibiotics he would get a fever and end up admitted to the hospital. Because they are trying to fight the tumor they have pretty much given up trying to find the infection for now. He is just going to stay on Cipro indefinitely. I'm sure at some point they will revisit it but I don't know when. He had a white blood cell tagging test to try to find the source of the infection but it was inconclusive. Have your doctors talked about doing radiation or chemo as adjuvunct therapy (therapy to get what cancer cells might be left behind)? I've heard of them doing it in several cases including my husband's. I wouldn't wish the radiation or chemo on anyone but it might be worth discussing with your doctors. Good luck with your fight - I hope you continue to have no recurrence. It is great to hear some good news about this cancer. Susan Susan i Sun, 01 May 2005 00:00:00 GMT Hi Susan: Sorry to hear about your husband, I sure know what he is going thru. I did get a second opinion from another specialist, he also told me the radiation or chemo would not affect this type of cancer, its so rare they don't know why radiation or chemo doesn't work, its very scary. I finally had to go to my family dr. had more blood work done and urine culture, the urine culture came back that I had an infection in the urinary tract, I had no sign of infection there which they cannot figure out. He is sending me for another ct scan and bone scan. How is your husband feeling otherwise, I am so tired all the time, I know it will take time to get over this operation but I feel i should be feeling better by now. Exactly what did they do to your husband as far as surgery, did they do a resection on the bile duct. Tell your husband good luck. Jackeline Mon, 02 May 2005 00:00:00 GMT Hi Jackeline, My husband definitely has ups and downs as far as how he is feeling. He had the surgery in October and was in the hospital for almost two months total partly because of the infection and a problem with his lungs. He got out of the hospital in mid-November. He was really worn out for the first month at least. Just a walk down the block was rough at first but he continued to walk and get stronger. He lost a lot of muscle mass so I'm sure that didn't help. By the beginning of January he felt better but was still tired. He started chemo and radiation at the beginning of Jan so that pretty much wiped him out again. He rebounded again after that to the point where some days we can walk more than 3 miles. With this new round of chemo he has some bad days again but when he has a good day he tries to be active and walk. Good luck to you. I'm sure your energy will get better. My husband's surgery sounds identical to yours and it was 21 hours long. It was a major surgery so I think it just takes a while to feel better. Susan i Mon, 02 May 2005 00:00:00 GMT After our visit to the surgeon, he confirmed it is not Klatskin. Her cancer is contained in the common bile duct which is in the lower part of the bile duct near the Pancreas - Distal Bile Duct Tumors. They will perform the Whipple Operation. Tammym Wed, 04 May 2005 00:00:00 GMT Hello, My mother had surgery about 6 weeks ago and had her bile duct and gallbladder removed. She had a tumor and it was contained in the bile duct and had not spread. They did numerous tests on her - CT scans, Chest exrays 2 ERCPS and could not see anything but know there was a blockage as she was sick and not being able to eat certain foods. She had the whipple procedure performed and the only 2 things that were removed were her bile duct and gallbladder. They did not know it was a tumor until they did the surgery. They make it sound like her prognosis is good as it had not spread. She will be starting combo chemo and radiation in the next couple of weeks for 4-5 weeks and then take a month off - then have chemo for 3 months. They say it is treatable as it has not spread. What was there prognosis for your mother after the whipple procedure? Thanks Jennifer Jennjo Fri, 13 May 2005 00:00:00 GMT Tammym, Good luck to your Mom. You're Mother's diagnosis sounds similar to what I was told when I was diagnosed with bile duct cancer. I am 65 yrs. old. I had the Whipple Procedure on January 19th, 2005. Procedure involved pancreas, liver, stomach, removal of gall bladder. The way it was explained by the surgeon, it was a reconstruction of the digestive system. Pathology report was good. Cancer was confined to the duct. 12 lymphs removed-all clear. Surgeon recommended radiation & chemo (to enhance the site for radiation) as follow-up to clean up the area for any leftover abnormal cells. I completed six weeks of radiation & chemo on May 2. It has been a rough road, but I am doing well. I am gaining weight and gaining strength everyday. I have follow-up in a few weeks, but so far, so good. I consider myself lucky. Let me know how your Mom is doing. Good Luck, Philmar Philmar Fri, 13 May 2005 00:00:00 GMT Well, a month ago there weren't any tumors present. After the doctor that gave her the second opinion ordered a endoscopic ultrasound, a tumor is present. He says there is a chance that she will need chemo and/or radiation, but we will discuss that later. My mom is more interested in having the surgery that she's not worried about that. She is having surgery as I type this response. Tammym Wed, 18 May 2005 00:00:00 GMT My mother had her whipple surgery on May 18, 2005. The doctors feel she will not need chemo or radiation because the cancer was contained in the common bile duct. She is doing fairly well, so far. She's sucking on ice chips and drinking water. They have taken her off the oxygen. She is walking to a chair in the room and sitting up at least twice a day - 30 mins to an hour at a time. Dr. Shen has not made a decision on whether or not she will be discharged in our custody for recovery after her hospital stay or send her to an outpatient facility for recovery. What should we expect her to leave the hospital with ---the drain tubes, feeding tube, IV and etc. We are so happy we decided to bring my mom to Baptist Hospital (affiliated with Wake Forest)in Winston Salem, NC. Everybody here is so compassinate. Dr. Shen is wonderful, but I am wondering are there any surprises that we should be watching for? My mom has alot of people praying for her, and I know that GOD is good and he has the last say so, but .............. Everything is going too smooth. Am I worrying for nothing? Tammym Sat, 21 May 2005 00:00:00 GMT Sounds like everyhting went well. Take it one day at a time. I came home free of any tubes, etc. Good Luck! Philmar Philmar Sat, 21 May 2005 00:00:00 GMT My mother is recovering well from her surgery, except for her constipation. Nothing over the counter seems to be working --Milk of Magnesia, Dulcolax, Suppositories. I suggested to my mom that she increase her water intake and fiber in her diet, but nothing is doing it. I believe the pain meds are causing her problem. Can anyone offer any advice? She needs some relief! Tammym Thu, 09 Jun 2005 00:00:00 GMT June 19th will make it one month to the day my mother had her surgery. We went to the doctor today for them to remeove the feeding tube. While we were there, the doctor informed us that 4 of the 10 lymph nodes removed during surgery came back cancerous. Although the cancer was contained in the bile duct, she will need a round of chemo and radiation (4 to 6 weeks). Her wounds will have to heal more before they will start any for of treatment. We will return to the doctors office in two weeks to discuss forms of treatment. Tammym Fri, 17 Jun 2005 00:00:00 GMT Were you completely healed before they started treatment? When did you start chemo and radiation? How often did you have to go in for treatment? Can you just tell me exactly what you experienced? We know that she will have to have treatments for 4-6 weeks. We will meet with someone after her incision heals more. Tammym Mon, 20 Jun 2005 00:00:00 GMT my mom had a whipple procedure 4 weeks ago and just started with constipation issues the last 8 days. She is not taking ANY meds. Like your mom no over the counter remedies are working. She was doing so well and now is miserable. If tonight over the counter suggestion does not work, I am taking her back to the surgeon. I am afraid there is a blockage. Brigid Thu, 21 Jul 2005 00:00:00 GMT My hauband is 66 and had lower bile duct cancer that had not spread, with surgery to completely remove in Sept. 04. He had 6 months of 5fU chemo (no radiation) and then got a CT scan that proclaimed him tumor free. But then he got obstructed from scar tissue a week later and had to have another surgery July 05. It turned out he had another tumor in the bile system but where it connects to the small bowel (thank goodness the surgeon's eyes were more sensitive than the CT). They removed it and now he is on more aggressive chemo. It sounds like having radiation to kill off any stray cancer cells is a good idea, as he got another tumor. My question is how do they do radiation if there is no specific tumor? Do they just radiate the entire area? Debbie616 Thu, 06 Oct 2005 00:00:00 GMT My't mom was diagnosed with colon cancer July 04 and and surgery to remove the tumor-they call it poorly differentiated tumor-4/24 lymph nodes affected-chemo for 6mths. and was just enjoying life again when all of a sudden she couldn-'t eat -ultrasound-cat scan-found a tumor in the common bile duct-procedure ERCP where they put a stent in the blocked duct so she can eat. She just had apptmt.with oncologist-sm. tumor in common bile duct and a group of drs. decide what her options are-so she has towait another week-they are not fast. Supposely where it is located they cannot do surgery-and my understanding that chemo-radiation usually doesn't shrink the tumor. I hope I hear from someone that has had the same cancer and what they did for them. At this point my mom said no more surgery or chemo. Sept.05 found tumor in bile duct. Amazing Tue, 08 Nov 2005 00:00:00 GMT Hello all My father age 64 had colon cancer in 2003, had surgery and the chemo in 6 months because of cancerous lymphnodes. My father was diagnosed with cholangiocarcinoma and spread to the liver ind february 2005. He was offered chemo but not as a cure. He went on the chemo regime with oxaliplatin and gemzar and xeloda. His tumor regressed sligthly but has now progressed and they have stopped offering chemo. So now I am desperate for starting a new battle against the tumor. But here in Denmark if one thing doesn't work you are not likely to get the chance to try another thing. Any advice would be much appreciated How is your mother doing. Greetings from Randi, Denmark aged 36 Ranner Fri, 30 Dec 2005 00:00:00 GMT