Bile Duct Cancer

Hello. I wanted to reply to your message. I am a first time user of this site. My husband is 28 years old and just got diagnosed with bile duct cancer. It is extrahepatic. He underwent a 20 hour operation in which 1/3 of his liver and his entire gallbladder were resected and part of his proximal bile duct. The first pathology reports showed that all his margins are clear of the disease. Four of his seventeen lymph nodes were infected. His small intestine is also attatched to his remaining bile duct. He has had some nausea, mostly after eating. This is due to the changes in your bodies digestive process. It is very important that you begin to try and approach the nausea with nutrition because your body is now processing food in a new way. We bought books at Barns and Noble. One is, "Beating Cancer with Nutrition" by Patrick Quilin and "The Cancer Recovery Eating Plan" by Daniel Nixon. They have really helped him alot. Good luck!

uvm85 said:

Dear P.A.W.,

Thank you for responding to my e-mail. I very infrequently check the site any longer, have only found one other person with whom to correspond re: cholangiocaricoma. Glad that I checked today.
I hope this finds you well and your husband on the road to recovery. His surgery sounds very much like my own, except that I had had a cholecystecomy (gall bladder removal) when I was 25, I was 39 when diagnosed w/ cholangiocarcinoma, and happily just celebrated my 41st birthday. It has been almost 21 months since my surgery. The nausea, as you had mentioned, has indeed been the result of the re-routing of intestines. I have also been prone to frequent bouts of cholangitis (inflammation of the bile duct - what is left of them).
I hope for you that your husband recovers well and gets stronger every day. I run, swim, and am currently planning on a triathlon next month. Next weekend I will walk for the American Liver Foundation walk for research.
The recovery is not always easy, sometimes terrifying, but keep the faith.
If you ever want to e-mail directly, my home e-mail is uvm85@ix.netcom.com
Take care

I would be interested in talking to someone who has the same type cancer as you described (but mine was inoperable) Thanks for your time.

pdgreer said:

I would be interested in talking to someone who has the same type cancer as you described (but mine was inoperable) Thanks for your time.

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

tsb said:

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

plz contact me at aaguilar@starcu.com

tsb said:

My mother was diagnosed 4 years ago with bile duct cancer, also as in your case, surgery is not an option. She went through radiation, the maximum amount that she can have, and she has been on chemo thru an IV, oral chemo (Xeloda)for 2 years, and now gemcitabine given to her by a port. She was only give 3-6 months to live four years ago, and she is still fighting. Hope this helps. Will help anyway we can, if you have any questions.
Take care.
Tammy

Tammy, I have just found this site. I am in the UK and my mother has just been diagnosed with cancer of the bile duct. She is an otherwise extremely fit and healthy 70 year old and this has come as a terrible shock (as you are aware). The internet is a useful tool, but in this case not very encouraging! It is however, comforting to find other people in similar situations who have dealt with this rare cancer. I hope that your mum is still fighting, and would like to share your experiences if they are not too painful for you.
I wish you all the best.
Jacqui

tochancer said:

This was such an encouraging brief story to read. My husband was recently diagnosed with bile duct cancer, he is 32. He had his gallbladder and bile duct removed but there is microscopic cancer left. in the last 5 weeks since the procedure it may have spread to additional lymph nodes in his stomach and chest. He is starting oral chemo this week. IV next week and radiation in a month or so. he will be on at least one cycle of gemcitabine.

No one can predict whether this will help him or not. They won't even give us the "what to expect" speech. Can you give any advise?

how is your husband doing
Hi,
I am newly diagnosed. Was to supposed to have my liver resected, but they found 3 positive lymph nodes so they consider it systemic and aborted the operation. I am currently undergoing gemzitabine chemo. The odd thing about all of this is that I do not have any symptoms or pain. There was no spread to organs. My liver function tests improved drastically even before treatment. I feel that they I should have the tumor taken out as the surgeon felt it to be operable. In fact they did open me up, but when they saw the 3/7 positive nodes they took out the gall bladder only. I now have a huge scar and no gall bladder. I feel great and have so far had 3 treatments. Nothing about my case is typical. I have seen 2 oncologists, but feel that I should have the tumor taken out.
I hope your husband is doing well.

If anyone reading this has a positive story to relate, or any suggestions please let me know.
A happy healthy new year.
Lillian Falko

JMKK said:

Bile Duct Cancer
Hi Tammy,

I see that you have not posted anything on this blog in over 5 years-hopefully you will log in soon. Your comment regarding your mother's bile duct cancer that is unresectable is the most positive story that I have yet to hear regarding bile duct cancer. My mother is 53 and was just diagnosed with bile duct cancer in May '09. I have seen the statistics and they are grim. Your post gave me hope. Can you let me know a little more about your mother's journey?

Sincerely,
Julie
thebalm@yahoo.com

Bile Duct Cancer
Hello Julie,

My dad was also diagnosed with bile duct cancer in May 09,' and is not a candidate for surgery. I too was reading Tammy's post and it was like a breath of fresh air. What type of treatment is your mom doing?

Laura

Hi Laura
My mom has been taking Gemcitabine and Cisplatin (chemos) since 7/6/09 every other week at MD Anderson Cancer Center in Houston. She had a stent placed in her bile duct in May and once July came she was very sick and we thought it was because she started chemo. However, we were first told that the plastic stent would be good for 4 - 6 months, but then another GI doctor told her that her stent should not have been in over 2 months and sometimes should be replaced after 2 weeks and that is why she was so sick (nauseous, fevers, chills, vomitting, etc). She got her stent replaced 3 weeks ago and she has been feeling great since. The chemo is not even affecting her (so now she is worried it isn't working). She got a CT scan on Friday and will find out all of the results on Thursday to see if they think the cancer is shrinking, staying the same or not responding to the chemo based on her CT scan, her ERCP results and her tumor marker. The Oncologist told me they just recently got a study back on giving Gemcitabine and Cisplatin to cholangio patients - which was king of surprising b/c they have been using these chemos for years, but the statistics are as follows: 30% of patients show tumor shrinkage, 60% show that it has caused the cancer not to spread, just remain the same and the last 10% it does not help. However, the shrinkage and cancer remaining the same only lasts for 6 months (on average). Her cancer has been said to be "locally advanced" with stages 3 & 4.

What abour your father? Is he getting any treatment?

I am not too excited about MD Anderson so far, in all honesty. I work in healthcare and I am not impressed. I have been researching alternative treatments, like IPT therapy, pure oxygen injections, natural supplements, etc etc. And ALL of them that I ask the Oncologist, he has no idea that they exist. It is quite concerning to me for a hospital that is supposed to be the leader in cancer care and research to be giving the same chemo for years and years that does not have a great outcome and no knowledge on treatments that seem to be working.

Can you tell me what your father is doing and how he is feeling?

My mom is not working, but she does everything besides that - swims, cleans house, cooks, etc. It is nice to see her feeling so well and looking so well because all that I read is terrible about this disease. She has been so healthy her entire life and is very young (53). I feel like if anyone has a shot at kicking this cancer to the curb it could be her. We just need to know the right thing to do.

I hope this helps.

Call me anytime - I will leave my number on this post so that anyone can contact me. I would love to know more about this cancer in hopes that we can help our loved ones through this. 281-788-1628.

Sincerely,
Julie

tg said:

Seeking Assistance
This is my first time posting here, hope I am posting in the correct place.

I was hoping for some advice. My mother, four years ago at age 55, was diagnosed with cancer of the bile duct. She had surgery in 2005 and underwent chemo and radiation in 2006. She returned to work in 2007 after her doctors cleared her to go back to work. About a month ago I moved back in with her and see she isn't doing well. She works full-time but comes home sick about two times a week. The other days she doesn't leave work early, she constantly has headaches and an upset stomach. I am concerned that working has become too much for her but when she asked her doctor today about approval for disability he said that it would be difficult because she isn't actively on any treatment. I don't understand this because she takes several medications and given her prior medical records, I feel as if he could have been more sympathetic.

Has anyone else had a similar problem or can anyone direct me to some resources for help? It's killing me that she continues to go to work everyday so run down and exhausted but must do it for the health insurance since Medicare won't start for another five years - I'm afraid she won't make it that long if she continues to work full-time.

Any assistance is greatly appreciated.

Dear tg,
Short of finding
Dear tg,

Short of finding another doctor.... I find it hard to believe that your mom would not qualify for disability?? Have you tried a social worker, her Oncologist or a GP? What type of Dr gave you this comment regarding it being difficult getting approval? Have you researched disability requirements with the state in which you live?

My mom was diagnosed with a bile duct tumor June 2008. Her tumor is inoperable and she cannot have a liver transplant because the tumor invaded the Portal Vein. We took her to the University of Washington and she did not meet the criteria. She has had Chemo, Radiation, and Photo Dynamic Therapy, but the tumor did not shrink. She has had multiple ERCP's and with the last one the GI Doctor could no longer get in to brush the stents. An Interventional Radiologist placed an external bile tube, and that has been a saving grace. Now she is developing ascites in her abdomen. She has had digestive problems, lack of appetite, and long term jaundice. She has lost a great deal of weight and had become very weak. It seems we go one step forward and two steps back. One drug that really helped my mom was Reglan. It worked better than any anti nausea medicine or drug like prilosec.

I will continue to research and help you find any information I can!!!

DebDJ

JMKK said:

Hi Laura
My mom has been taking Gemcitabine and Cisplatin (chemos) since 7/6/09 every other week at MD Anderson Cancer Center in Houston. She had a stent placed in her bile duct in May and once July came she was very sick and we thought it was because she started chemo. However, we were first told that the plastic stent would be good for 4 - 6 months, but then another GI doctor told her that her stent should not have been in over 2 months and sometimes should be replaced after 2 weeks and that is why she was so sick (nauseous, fevers, chills, vomitting, etc). She got her stent replaced 3 weeks ago and she has been feeling great since. The chemo is not even affecting her (so now she is worried it isn't working). She got a CT scan on Friday and will find out all of the results on Thursday to see if they think the cancer is shrinking, staying the same or not responding to the chemo based on her CT scan, her ERCP results and her tumor marker. The Oncologist told me they just recently got a study back on giving Gemcitabine and Cisplatin to cholangio patients - which was king of surprising b/c they have been using these chemos for years, but the statistics are as follows: 30% of patients show tumor shrinkage, 60% show that it has caused the cancer not to spread, just remain the same and the last 10% it does not help. However, the shrinkage and cancer remaining the same only lasts for 6 months (on average). Her cancer has been said to be "locally advanced" with stages 3 & 4.

What abour your father? Is he getting any treatment?

I am not too excited about MD Anderson so far, in all honesty. I work in healthcare and I am not impressed. I have been researching alternative treatments, like IPT therapy, pure oxygen injections, natural supplements, etc etc. And ALL of them that I ask the Oncologist, he has no idea that they exist. It is quite concerning to me for a hospital that is supposed to be the leader in cancer care and research to be giving the same chemo for years and years that does not have a great outcome and no knowledge on treatments that seem to be working.

Can you tell me what your father is doing and how he is feeling?

My mom is not working, but she does everything besides that - swims, cleans house, cooks, etc. It is nice to see her feeling so well and looking so well because all that I read is terrible about this disease. She has been so healthy her entire life and is very young (53). I feel like if anyone has a shot at kicking this cancer to the curb it could be her. We just need to know the right thing to do.

I hope this helps.

Call me anytime - I will leave my number on this post so that anyone can contact me. I would love to know more about this cancer in hopes that we can help our loved ones through this. 281-788-1628.

Sincerely,
Julie

To Julie and Laura
Hi,

I know how difficult it is learn that your parent has cancer. I know there is little information out there on cholangiocarcinoma, but I found a website completely dedicated to this type of cancer. http://cholangiocarcinoma.org/
that might be helpful. I wish your parents the very best. No matter what the future brings, the most important thing is to love them and support them the best you can.

Sincerely, Kimberley