Cholangiocarcinoma

Hi,
My name is Cindy and my husband had a full whipple procedure and liver transplant done at the same time by Dr. Justin Nguygen, St. Lukes, Mayo Hospital, Jacksonville, Florida, September 23, 2004. What a miracle by the entire staff at both Rochester, Mayo and Jacksonville.

My husband was diagnosed with PSC about 4 years ago, two years he was diagnosed with bile duct cancer. He went through numerous stent placements, chemotherapy, radiation, brachytherapy and numerous blood transfusions at the Mayo Clinic in Rochester, Minnesota. In December 2003, I noticed that he was becoming jaundice. He became chilled and had a temperature of 103. I took him to a local ER hospital and they prescribed Cipro. Well, I knew that he had more than the flu, so the next day I took him to Mayo. That’s when Dr. Gores started the protocol of chemo and radiation for one month.

On February 14, 200, they did surgery to see if the cancer had spread, it had not. We were put on the transplant list. He also had PSC of the liver. We waited six months and finally after he had lost 60 pounds, Dr. Gores made mention that he would get a liver faster if he went to the Mayo Clinic in Jacksonville. We immediately made the necessary arrangements and were gone within the week.

When we got to Jacksonville, he had to redo all tests. His MELD score was 27, within three weeks we got the call. They never expected to have to do the whipple procedure, but once inside they had no choice. They removed 1/3 of his stomach, most of the small intestine and the head of the pancreas. He also received the biggest gift of life, a perfect liver. He was in the hospital for almost 6 weeks for infections and a few minor complications.

It has now been almost 4 months since the operation. Needless to say it’s a struggle. He doesn’t feel like eating and when he does he usually feels like vomiting and often does. He is not down to his lowest weight (6’2”, 139 lbs.). He started out at 220. We have been to every nutritionist, he’s on antidepressants, but I still can’t get him motivated. I signed him up for physical therapy, I got a stationary bike and he still has no energy. I know it will take time after such a huge operation, but how long do I wait? He seems to get worse instead of better.

Needless to say, I am completely frustrated. What can I do? Please help. Thanks for listening. The care he received at both Mayo hospitals was fantastic.

Cindy, I was diagnosed with cholangiocarcinoma 2 years ago and underwent a liver resection where they removed part of my liver. I underwent chemo and radiation therapy about a month afterwards. Though my procedure was not as extreme as your husband's, I went through the same problems with food that he is now facing. I didn't want to eat anything and had lost nearly 15 pounds, which is a lot for someone 5 feet tall. I would cry as I made myself eat something, 3 times a day. I drank a lot of water to wash everything down. I would tell myself with each bite that this was a matter of simple of survival---for myself and my family. If he can take small amounts of nourishment at first, and gradually add on, it is easier.

If your husband can keep in mind the gift of that perfect liver and remember that he is now the caretaker of it, he may see he owes it to that person whose liver he accepted to give it care and nourishment---kind of like adopting a child. I realize he is in a depressed state and reasoning doesn't always work. Good luck and may God bless.

Hi Cindy,
My father was just diagnosed with cholangiocarcinoma at Duke University. He was sent to Mayo for futher treatment and follow up. He has been accepted in their transplant program. I would like any first hand information as to what he should expect. He does not have PSC. He is 69--I think their oldest patient. He is very healthy except for his liver. He was fine until December 8. Prior to that he had some unusual scans, but no symptoms. He is in the executive health program at Duke. He has more had more scans and comprehensive workups than the typical 69 year old. As we were told most people don't get a clue about this until it is too late. They were just beginning to follow up on the abnormalities found just this summer, but before Dad could go back for follow up he developed severe jaudice and received his diagnosis.

How old is your husband? Any first hand advice would be greatly appreciated. We know this is a very rare cancer and that successful transplant is the only hope for a cure. Dad's age seems to be the only draw back. We are looking for anyone else willing to share their story. we are praying that successfull treatment at dad's age will be an encouragement to others out there.

I pray that God will bring complete healing to your husband, that he strength will increase as well as his appetite.
Felicia

My Husband was diagnosed with bile duct Dec 2004 the cancer had matastasizeded to his 3rd and 5th vertabrae,his vetrabrae had collasped. He has had a bad back and pain in his left leg since Feb 04 and was going for physio for six months, they thought it was sciatia. We knew that there was something else wrong but the feedback was that it can take time to heal. He became jaundiced in August 04 and I knew then we were dealing with more than Sciatic. I called our family Doctor and it took until the end of September before he a a CT Scan. He was told he had some form of cancer but it was not until December 3 that we were told what it was. He had surgery on Dec 20/04 to repair the vetrabrae and had steel pins inserted. They cleaned up what they could and he received 10 radiation treatments for the rest. He is suppose to start chemo in the next few weeks, but His Doctor does not think it will do much good. He has had 3 stents put in since October so we have undergone quite a bit of turmoil over the past few months. We have not been told about surgery to remove the tumors in his liver. We have been told he is at stage 4 and we should worry more about his quality of life. He is 55 years old and a real fighter but the last few weeks he has become very depressed and the pain in his leg seems to be getting worse. We were told that there is something available in our province(Ontario) but since he is at stage 4 the government will not approve the drug. We are both starting to fall apart due to the lack of support out there for us.

Hi Cindy, How is your husband doing? I am very interested in your story. We went to see our third specialist yesterday at the Princess Margaret in Toronto, Canada. We received the same news as the other Doctors, because the cancer has spread to this vertabrae, they will not orperate. He is doing well considering what he is dealing with except that the stents are always clogging, he is having a metal stent put in on March 24. He starts Chemo on April 1/05 (5 FU). There are a few drugs we would like him to try, I am currently investigating why they cannot be offered to him. Take care, Lana H

Lana, Just read your entry and hope all is well. My husband passed away from Intrahepatic Cholangiocarcinoma. I'm curious as to whether or not your husband was exposed to chemicals or served in Viet Nam. Thanks, jmar8

My 40 year old husband was diagnosed with Intrahepatic Cholangiocarcinoma in September 2004. He had surgery at the beginning of October which removed part of his bile ducts and 60% of his liver. He recovered well from surgery and started radiation and chemo in January 2005. They were hoping that would get rid of any remaining cells but unfortunately it didn't. Another tumor showed up in March so they are starting him on another round of chemo (FOLFOX 6) next week. Does anyone know of any other treatments/medications or treatment centers/doctors that specialize in this type of cancer? We know there is a very bleak diagnosis for this cancer and want to try everything possible. The doctors have no idea how he got this cancer as it is so rare, especially in someone his age. He was not exposed to strong chemicals in his life and has not traveled to the countries which might put him at risk.

Cindy

I read your referral to the doctor at Mayo, my brother has just been diagnosed and he is going to be seeking info at Mayo and I will pass your doctor name onto him...

You have not been back on line since January and I am wondering how your husband has been doing...please let me know if he has been able to find food that is appealing to him...and gain weight.

Thanks,
Maria

I just registered with Cancer Compass and posted
a message today seeking information about
Cholangiocarcinoma. I read the existing messages
and found yours of interest.

My father was recently diagnosed with advanced
biliary tree cancer. It has metastized into the
liver and is not resectable. They had to resort
to placing an external biliray drain in order to
get his bilirubin count down and to stop the
liver failure. We have been told my dad will
not live long - at first they were saying less
than a year - now they are saying weeks, maybe
months.

My father served in Vietnam and was exposed to
Agent Orange. He is a machinist by trade and a
shade tree mechanic on the weekends. Chemicals,
especially petroleum based chemicals were a part
of his daily life.

On another note, my Dad is a Leukemia survivor.
He had AML in 1990 and went into remission after
a year of treatment. He filed some paperwork
with the government relating to his Agent Orange
exposure, but nothing came of it. Do you have
information tying this type of cancer to AO
exposure? I'm very interested in hearing what
you know.

Tammy

Lana,

I am not Canadian, so I do not know your system, but there appears to be a special approval process available for getting certain medications, including Oxiliplatin. This is the web link. http://www.cancercare.on.ca/pdfchemo/Folfox6-adv-col.pdf

You will note that this related to colorectal cancer, but I suspect the process will be much the sameGood Luck and do not give up! There are meds out there that are not as expensive as Oxiliplatin. They are carboplatin and cisplatin. They do not have quite as much documented results behind them but some physicians believe that one is about as good as another. They will usually tell you that Oxi is the best, followed by Cis then Carbo. It seems that the FOLFOX regime does not involve such costly meds, with the exception of the Oxi. Perhaps you could substitute Cis or Carbo. Even Gemzar alone, though not as effective as in combination, has shown good results for some people. Check this link and look for posts by Marlyn Samson. http://www.choosehope.com/forum/read.php?f=1&i=1046&t=1046

There is a lot of good info on that message board.