Cholangiocarcinoma

Jeff,
Thank you so much for your information. My Husband started Chemo 1 1/2 weeks ago and is doing very well, he is taking Xeloda which is taken orally, he has had no side effects yet.

Hi!
I just came across this web site today. On Mar 17, St.Patrick's Day, my dad was hospitalized and
diagnosed with choalangiocarcinoma. He had been undergoing tests and procedures since June 04.
The physicians were unable to diagnose at that time. Dec 31 04 he was admitted with fever, chills
and painless jaundice. An ERCP was done and he was scheduled for an open Chole on 1-6-05. The
surgeon told us there was no cancer, just an en-larged gall bladder. He was dc'd home only to get sicker and sicker. A new stent was placed.
He was unable to eat and continued to get more
jaundiced. Blood work was finally ordered after numerous calls to the physician. His CA-19-9
came back at 182! Normals are 0-37. We were finally
referred to a biliary surgeon Dr.David Linehan at Barnes-Jewish Hospital in St. Louis, MO. Within 24 hours my Dad, a very strong Irishman, had his diagnosis. He was scheduled for the Whipple procedure. After 5 hrs of surgery Dr.Linehan
realized the cancer was not resectable. The Whipple was not performed. We were not given a good prognosis. On APRIL 8TH HE TURNED 78. We do
not want to give up. He is not eating and now is having diarrhea. What can we do? We are open for any encouragement and suggestions.

Thanks, Kathi

Hi Lana,

Xeloda converts to 5f when metabolized. 5fu is a well recognized med for a variety of cancers. But it is often used to greater advantage when combined with other meds, such as Gemzar, Oxaliplatin, Leucovorin. If your husband is getting good results on a single agent, then you may choose to let that bet ride for a while; but be ready to add other meds if the Xeloda stops working. One woman I know of (and have spoken to) has been alive 4 years with cholangio, and is doing well, on this combination therapy. The object here is to stay ahead of the wave while better approaches are discovered. There is no magic bullet for now, but the survival has improved a lot in the last few years, due primarily to the ability to keep the bile ducts open while additional chemo is tried. Mayo clinic in the States is using a novel approach to dealing with the duct problem called photodynamic therapy. It is described at the following link. http://www.mayoclinic.org/bile-duct-cancer/treatment.html. See also http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&d But doctors I trust at Sloan-Kettering in NY and elswhere would tell you that you should not use this as primary treatment. Chemo is the only way to go for that. If the liver starts to fail before all chemo approaches have had a fair chance, then local therapy like this is used to restore liver function and give chemo more time to work. Good Luck. Jeff

Jeff,

What stage cancer did that women have?

Rick

There are a million ideas out there, but my wife who has cholangiocarcinoma with a stent and lots of chemo coming in was put on tagamet reglan and a bile salt called Ursodiol. Slowly but surely her appetite has improved and the nausea has faded. Pain control is important. She takes low dose Oxycontin (10mg) just once per day and finds that she can eat much better about 45 min after a dose. It also helps to stick with breakfast-type foods that are usually better tolerated. I am sure that you have been told about Ensure. It is not a substitute for eating, regular foods, but it can help. Your husband has been through a lot. He needs to look down the road, not at the two inches in front of him. He is lucky to have you and knows it but is surely getting discouraged. Just be patient with him. Hugs help. Good luck. This disease can be beaten, though it is not easy.

Jeff

I just found this website and messageboard and am so thankful to be able to talk with others who are touched by this terrible disease. My husband was diagnosed in July of 2004, had surgery but they were unable to do a Whipple because of NASH (non-alcoholic steatic hepatitis) which increases the chance of hemorrhage. They removed the gallbladder and a nodule from the liver, but could not remove the tumor in the bile duct. He had low-dose chemo to enhance the radiation in Sept and Oct. During the past year had a stent inserted into the bile duct and changed a few times, not to mention all of the other procedures/tests. He was doing well and then in Feb the CT showed multiple spots in the liver. He started on the combination of Gemzar once a week for 2 then 1 week off and Xeloda during the same 2 weeks, and was doing well (except for fatigue and gas and churning due to the radiation) and the tumors had not grown and had even decreased slightly, and the tumor markers were decreasing alot. When we went this past Fri for chemo we found that the CT from Tues had shown that 3 of the spots had increased in size from the scan in May. We will talk with our oncologist tomorrow and I'm sure she'll start another chemo agent or add one. I keep praying that God will cure him but I know that this is a very difficult cancer and the prognosis is poor. We were just married 5 years ago and at the age of 60 and 52 we found our soulmates - I want to keep him for as long as possible! We wouldn't be able to make it without God's love and our family and church family. I am so grateful to have found this messageboard to share information with people who are going through it with us.

Jeff
How is your wife doing, I noticed that you respond to many emails, you are so positive and hopeful, that is how my husband and I are. We spend a lot of time together, we see friends and family and always plan ahead, he has gone golfing today and we are looking a buying a new car for him. The Chemo was stopped in July as it was not working, however he has entered a Phase 1 Trial, other than being tired some days he is OK. How do you know so much about this cancer and why do you think it can be beaten?

Hi Jeff,

I also go under the name of Lana (nickname)
We are Canadian.

Hi Lana,

My wife is doing pretty well. She has gained back about half the weight she lost and her liver function numbers are very good: low bili and other enzymes are normal or close to it. I only know what I have learned through our experience and reading everything I could get my hands on. Now, let's talk about your husband. I am a little concerned about him being in a phase I trial. Those are primarily about determining effective doses without excessive toxicity and usually at that stage there is very little data about the effectiveness of the drug. Phase II means they have the toxicity figured out and they are going to see about effectiveness at the doses deemed to be safe. Phase III means Phase II results were very promising, and they are now going to a much larger study. Karen gets low doses of 5 different drugs. They are: Gemzar, Leucovorin, 5fu, Avastin and Camptosar. The synergistic effect seems to be helpful, and the lower doses keep the side effects manageable. The Dr. we see, Howard Bruckner in Brooklyn, says that his response rates are just over 50%, whereas the national rates are only 20-30%. There is also a lot of material coming out on radiofrequency ablation and photodynamic therapy for control of the duct tumors directly. These methods do not reach metastatic tumors elsewhere than in the ductwork, but they can be very effective in keeong the ducts going while chemotherapy alternatives are tried. I have a number of articles on these things that I got from putting cholangiocarcinoma through the PUBMED wesite. You can do the same, or I can send you what I have. Good Luck.

Jeff

Jeff and Lana,
My initial message is #16 under cholangiocarcinoma. My husband was diagnosed in june of 2004, had surgery but not the full Whipple due to steatic hepatitis in the liver which caused alot of bleeding. Low dose chemo and radiation in Sept and Oct and when CT showed spots in liver in Feb started on Gemzar and Xeloda. Did well until this month when CT showed increased size and the stents clogged twice due to increase in size of the bile duct tumor. Sooo now we've just started FOLFOX (combination of 3 chemos and Avastin). No side effects from his first dose yesterday. Hoping it continues and that the tumors shrink. We too have stayed pretty positive but it's sometimes hard - like an emotional rollercoaster. It helps to talk with others going through the same thing. I'm glad to know your spouses are doing pretty well. I'm interested in knowing more about the radiation ablation and any other treatments. I'll try the website you mentioned, Jeff. Donna548