11 year Cholangiocarcenoma survivor! WOW!

History - Diagnosed: bile duct cancer Apr 98. Liver resection Jul 98 (left lobe & bile duct). CT scan: unoperable tumor in lymph node in 2003. Symptoms start Feb 2005 - Weak & lost 55 lbs. Pet scans showed nothing ‘til June 06, then showed tumors thruout my abdomen, in liquid that around organs. Gemzar: most tumors gone but I felt terrible, Nov 06. Tumors return May 07; Gemzar & Tarceva have keep them at bay now. Now May 09 - I’m healthy; work out, ride bicycles, and work on the ‘46 Ford. Still weaker that I would expect; lost my finger prints last winter (They rubbed off) and am losing my finger nails now (thin soft & weak) Do I save my money for my nineties or figure that no one but no one would bet on me being alive another five years. Course no one would have bet I'd make it 'til now.

Kept on telling my boss that I was having terrific problems, weakness, nausea, weight loss, alarming chills & fever. His comment "You look great - Never looked better - okay I could afford to lose 65 pounds and I lost 55 lbs; but it felt like I was dying.

My husband was diagnosed with cholangiocarcenoma March of 2005. The treatment at that time was 5FU pill form and radiation. The liver was burnt up from the radiation and could not tell from ct scans if there was a tumor or not in the bile duct. In November of 2006 he was put on the liver transplant list because it was doubted he ever had this dreadful disease.

He had the transplant November 26, 2006 and has been doing very well. Until in May of 2008 there was a burst appendix that took him into the hospital. Since then he has experienced constant abdomen pain.

After 2 colonoscopies and one barrium scan the dr decided to do surgery for diverticulitus to remove 12 inches of colon. Inside found cancer diagnosed as cholangio in all 4 quads of the abdomen. It has grown outside of the liver.

I am interested to know what kind of chemotherapy they have given for you. Sounds as if you have had some success.

 

The first chemo treatment I received was gemcitabine (Brand name: Gemzar) by infusion (nine cycles). While I was never cancer free, the Gemzar knocked the tumors back to less than a tenth the size they were. After six months the tumors grew again and I was given a nine more cycles of Gemzar by infusion and I take a pill called erlotinib (Brand name: Tarceva) every day. As I recall, a cycle of Gemzar is infusion once a week for two weeks followed by a week off. To put it another way: I had eighteen infusions in twenty seven weeks. I have not had a pet or ct scan in about nine months but I so not have any symptoms either. I think my oncologist will set up a pet scan at the end of this month. He uses the pet scans to tell him how much activity is going on in the tumors. If it increases I will go back to the Gemzar infusions. Talk to your oncologist about it. By the way since bile duct cancer is so rare there really doesn't seem to be any treatment program for it. The treatments I get are usually used for metastasized pancreatic cancer, a similar disease. While it is not encouraging, look up cholangiocarcinoma in Wikipedia - www.wikipedia.com they list the treatments in there, including mine. Finally... Never Give Up! I have been told at least three times that I would not live out the year. I was first told that in 1998. Both you and your husband will be in my thoughts.

Thank you Blackhound for your encouragement. My husband, Mike, will have CT's done tomorrow at UAB in Birmingham, AL. They are suppose to change his immunosuppressant, Prograf to another immunosuppressant, Sirolimus. While Prograf will promote the growth of tumors, the Sirolimus is known to suppress and decrease tumor growth. At least that is the plan for now. He has lost 20 lbs in the last 4 weeks, but trying to eat as much as possible. Just not hungry. He is 56 yrs old and had never been sick before this hit him about 4 or 5 years ago. He was always so fit and healthy, it is hard to see him like this.

 Dear CCSurvivor Your story gives me immense courage and boldness to fight with this nasty rascal of cholangio. I have bitten with this bug and diagnosed in july 2007 got it operated in march 2008with rt lobe resection along with gallbladder lymphnodes and common bile ducto with hepatic jejenostomy  .hpe was with negative margins. back to work with in 4 weeks going strong ever since. doing 6kms walk every day. and marathon walk every 3months and trekked 15000ft himalyas last nov. inspite of all this , there is some element of fear in my deepest thoughts. but i take your story and go along with positive thinking and fight the disease  to my best. any way thanks for infusing me so much of  courage and  moral energy which is fuelling my psyche. thanks again . dr mahipal

On 5/29/2009 blackhound wrote:

History - Diagnosed: bile duct cancer Apr 98. Liver resection Jul 98 (left lobe & bile duct). CT scan: unoperable tumor in lymph node in 2003. Symptoms start Feb 2005 - Weak & lost 55 lbs. Pet scans showed nothing ‘til June 06, then showed tumors thruout my abdomen, in liquid that around organs. Gemzar: most tumors gone but I felt terrible, Nov 06. Tumors return May 07; Gemzar & Tarceva have keep them at bay now. Now May 09 - I’m healthy; work out, ride bicycles, and work on the ‘46 Ford. Still weaker that I would expect; lost my finger prints last winter (They rubbed off) and am losing my finger nails now (thin soft & weak) Do I save my money for my nineties or figure that no one but no one would bet on me being alive another five years. Course no one would have bet I'd make it 'til now.

Kept on telling my boss that I was having terrific problems, weakness, nausea, weight loss, alarming chills & fever. His comment "You look great - Never looked better - okay I could afford to lose 65 pounds and I lost 55 lbs; but it felt like I was dying.