dlm2010

Ginger, I live in Derby, Kansas. My husband, Ted was diagnosed with Cholangiocarcinoma (Klatskins Tumor) in August 2008. His tumor was unresectable. We went to John’s Hopkins hospital in Baltimore, Md. However,
he received followup treatment in Wichita. The surgeon in Wichita, Dr. Duane Osbourne was instrumental in setting us up with a colleague at Johns Hopkins, Dr. Pawlik who performed the surgery. Both wonderful! Dr. Osbourne is very familiar with CC. You might try to contact him and get an opinion. Ted’s oncologist is Dr. Parva Reddy (Cancer Center of Kansas) in Wichita, he is also familiar with CC and his treatment plan has worked well for Ted. He was recommended to us by an oncologist specializing in Bile Duct Cancer from KU Med. Center. Ted also received daily radiation from Dr. Joseph Kelly at the Cyberknife Center in Wichita. Excellent doctor! If your daughter needs to have surgery you really need to be at a hospital like Mayos, MD Anderson or Johns Hopkins where a team of surgeons specializing in CC will be able to help you. The doctors I have mentioned above are in Wichita and able to advise you. Ted’s tumor was unresectable but was treated with Xeloda and Radiation and he has responded well, to the point they can’t see the tumor on the PET/CT scans and MRI tests that he has done every 3 months. It has been almost 3 years since his diagnosis and we are very grateful to all the doctors that treated him. If you would like to talk anytime, please let me know and I can share more information with you.

Suzanne,
My husband has a hernia right under his abdominal surgery incision sight. He developed this about 4 months after surgery. We had an appointment today with our Radiation Oncologist and he wants our surgeon to look at it to see if anything should be done. He really thinks it should be left alone but the hernia has grown since our last visit and he wants the surgeon’s opinion because it is getting larger. He did tell us that the hernia is “flat” and shouldn’t cause any problems but it does protrude and is annoying because he has to consistently push it back in to his chest. The hernia is also located very close to his external drain sight and that would make the surgery more difficult. I am really hoping our surgeon says he shouldn’t go through the hernia repair because I really hate to see him go through surgery again and the risks of infection and other complications that could occur. My point is we were told by our oncologist and radiation oncologist to leave the hernia alone and neither one recommended surgery until the hernia got bigger and then they wanted us to consult with our surgeon just to be sure.

Make sure your doctor is aware of your hernia and be very careful not to strain yourself or lift anything heavy. My husband feels good and tends to try to do too much around the house, it is hard to keep him down. That could be why his hernia has grown. We were told that post operative hernias are very common.

Debbie

Ron,
My husband was diagnosed in Aug. 2008, unresectable in Sept. 2008, began 6 weeks of daily radiation in Nov. 2008 with 2 weeks on Xeloda and 1 week off. He completed 6 rounds of Xeloda -2 pills in the morning and 2 pills in the evening. He got along great and finished treatment at the end of May. The only side effects he had was hand and foot syndrome. He said it felt like his hands were very slick and dry and it was hard to hang on to things. His feet were very dry and our oncologist recommended Bag Balm (you can get it at WalGreens), to rub on his feet. He did say during the time he was on chemo certain foods did not taste good and had a “metal” taste. We used plastic utensils during this time to help with that symptom. He is now being monitored with imaging tests and blood tests. So far the tumor has shrunk and is not showing up on the tests. His latest CT-19 (tumor marker blood test) showed he was at 14. He previously had been at 650. We are very encouraged with the results from radiation and Xeloda. The treatment of Xeloda was recommended to us by the oncologists at Johns Hopkins and KU Medical Center.

Hi Sarah,
My husband, Ted, has two bilary plastic stents on the left and right side of his bile ducts. They truly have saved his life allowing him to drain the bile internally so it doesn’t backup in his liver. They are capped off and not attached with bags. He also had a roux n y to help him drain which was performed during his surgery. His bile duct tumor was deemed unresectable during surgery, however, the Roux n y has proven to be a lifesaver. Our oncologist told us that Ted will have the plastic stents in until he is in remission and then they will be replaced with metal stents. Right now they are working wonders and my husband’s bilirubin levels are within a normal range. I wanted to share with you that everytime we go for a stent change, the next day my husband develops fever. The interventional radiologist has told us the stent changes are very hard on the patient’s system with the possiblity of scar tissue developing and infections. We have learned at this point to treat the fever at home with Tylenol (as that is what they used when his fever was 103 degrees in the emergency room). We treat his fevers at home if they are l00-101 degrees. If the fever climbs to 102 as it has on 2 occasions then we call the doctor and go to the emergency room. We have an antibiotic (Levaquin) to use only when the doctor tells us to use it. He gave us directions not to use it frequently as Ted would develop an immunity to it and it could quit working for him. We have only used it with the higher fevers and after the high fevers for a week. His 100-101 fevers are occurring at fewer times now and usually with two Tylenols and a wet wash cloth on his forehead it goes down within two hours. However, your doctors may give you different advise including whether or not you should use Tylenol and what will work for your specific situation. I know we feel very grateful for our doctors and the care they have given my husband. But each case is different and everyone responds differently to various treatments. This has been our experience with fever and infections and thankfully we have been able to manage the low fevers up to this point.

I am so happy that John is doing great after his first chemoembolization. That is truly a blessing! Johns Hopkins is a wonderful hospital with brilliant doctors that are dedicated to helping our loved ones with bile duct cancer! Thank you for the update. My prayers are with you both.

Sarah,
I am new to this forum, but I wanted to respond to your recent posts about treatment centers closer to your home. My husband has been diagnosed with intrahepatic bile duct cancer (Klatskin’s Tumor) since August 08. We were referred to Johns Hopkins Hospital in Baltimore, Maryland and were there for 5 weeks – a long way from our home in Kansas. We had a wonderful surgeon and met with a great Radiation Oncologist who performs Brachytherapy. The doctors at this hospital specialize in Bile Duct Cancer and are very up to date with current treatments. They present your case to a team of liver surgeons weekly and together they determine what should be done. My husband had surgery on Sept. 24th but unfortunatley the tumor encased his portal vein and hepatic artery and they could not perform the liver resection we had hoped for. They removed his gall bladder and rebuilt his bile duct with a procedure called a roux en y to help drain the bile. He has 2 stents, one on each side of the confluence of the bile duct close to the liver and now the newly built roux en y. Recuperating from surgery was difficult but he has done very well. We are back in Kansas and he is currently receiving daily radiation treatments and chemo (Xeloda). He has gotten along well. Our hope is that the tumor will shrink enough that our radiation oncologist will be able to administer Cyberknife treatments. We won’t know until the middle of January. I wanted to post this to let you know that Johns Hopkins is a wonderful hospital and we are so thankful that we received treatment there. Our surgeon was brilliant and we were so pleased with the care he provided us. My husband’s surgery took 8 hours and our surgeon did all that he could before he decided to abandon the liver resection. My husband is doing well at this time and he is 57 years old. It sounds like your boyfriend is young and would have the gift of strength and youth on his side. Please don’t give up. We were given a dismal prognosis in August and faith, hope and prayers have brought us a long way. If you would like to ask me anything about Johns Hopkins please e mail me and I would be glad to give you our doctor’s names and any other information you need. Good luck.