Bile Duct Cancer

HES4C said:

I'm so sorry to hear about your wife's diagnosis. My husband was given the same diagnosis about 6 months ago and is currently receiving chemo. Consider taking your wife to one of the major comprehensive cancer centers. Here is a link to the National Cancer Institute's list by state http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#IL. You may also want to look into clinical trials. The Institute has a searchable database at http://www.cancer.gov/clinicaltrials. And their overview of bile duct cancer is at http://www.cancer.gov/search/results.aspx. In our experience, doctors who deal with pancreatic cancer are the ones who are most knowledgeable about this disease. Wishing you strength and courage in the days ahead.

rowena32 said:

Hello
I, also, have bile duct cancer. I have had radiation and chemo. I finished both the first of November and have just been watching the blood tests. Last month the CA-19 got down to 1525 but yesterday. a month later, it is up to 4074. I have a call in to my doctor to see what the next step will be. It was so nice not having treatments for 4 months, but now I am afraid it has given the cancer a chance to grow. The chemo and radiation did not shrink it but it did not grow while I was having treatments. Tina, what is ec cancer? Does the xeloda seem to be working? I had a metal stent put in my bile duct last July when I was diagnosed with the cancer. Have you heard of any success with photodyamics? I live in California and plan to go to UCSF. Hope I am making the right decision.

rowena32 said:

Hi, Tina,
I hope your dad's pet scan will be a good one. It will be great if the xeloda will work as well with the liver cancer as it did on his ec. I will ask my doctor about the xeloda as my veins are not holding up. If and when I start chemo, again, I will probably have to have a "port". I have heard good and bad things about having a port. Let us know the results of your dad's scan.
Best wishes,
Rowena

cvertz said:

Thank you
Thank you for your comment. We are currently working with doctors from both the Mayo Clinic and University of Chicago. I am sure we will be starting her chemo shortly. I will definately look into these websites that you gave me. Thank you for your time and consideration.

mrslar said:

Bile duct cancer
I pray for each and every one of you. My brother, who is 43 years old, had a Whipple's procedure at Johns Hopkins on Monday and should come home this Monday. We do not have his pathology reports back, but a previous scope indicated the tumor was cancerous. Until we meeting with the doctor on Monday, we are unsure as to his method of additional treatment post surgery. This is all very scary and makes you realize what a gift each day is.

My brother has been diagnosed with bile duct adenocarcinoma.. after they had first told us he had cancer of the pancreas. He was scheduled for a Whipple procedure at the first of the month because the "surgeon was busy" and couldn't fit this in... which I don't believe. He turns 65 the first of august and he'll move from Medicaid to Medicare. Since he's been in the hospital, he's lost so much weight the surgeon won't operate until he gains weight. He gags on all his food and after almost a month - they just decided to add Boost to his meals that he won't eat. With the need to gain weight, why is he on a low sodium, low far and sugar free diet? He is diabetic but that can be controlled with insulin. He asked one night for a piece of pie with some cold milk and was told "no".. that's not going to kill him and seems eating whatever he likes would help with the weight gain. It gets worse each day.. and now he's too weak for the surgery and now after feeding tube ruled out and IV nurtition ruled out ( I don't know why because the doctors never return my calls ) - now they are tossing around "Nursing Home" after we had set up home health with 24/7 nurse, therapists and care giver 5 hours a day. The doctors are the ones that order this.. and his insurance will pay for it.. but doctor for some reason doesn't want him home to wait for the surgery and gain weight. Seems to me there is something wrong here.. and things I don't know about. He's scared and I'm scared. When they do the Whipple procedure, don't they first just open you up and get a visual on the organs to see how much it has spread and if they think the surgery won't help, close him back up. Chemo would do no good - am I right? If he's at the point where surgery won't do any good why don't they discuss a well death not this misery and pain, fear he's going through? He can't remember what the doctors tell him, and untl I get his POA this week, they won't talk to me at all. I'm nobody and he's a grown man and his medical information is private. He can share but he doesn't understand. I asked him if he knew what a pancreas was or did and he didn't know or what the bile duct did.. he didn't know. I brought a color chart of the organs and what each one does to the nurses and asked them to explain what they did and what was wrong with his. They never did this. He's in the dark and I'm in the dark and the "nursing home" words scared us both. One day he's going home, next a stomach tube, next no stomach tube and he continues to become so weak he now needs help to walk and has an alarm on his bed to keep him from getting out of bed alone. He lies and tells me he eats his food, and that he had a shower and he hasn't. Today he said he's showered and I asked him what pajamas he put on and he said "i didn't take my clothes off" I washed my hair in the sink and brushed my teeth. "with a nurse?" "no" - that's not possible for them to let him up alone so he lies about that. He finally asked me to check on his cable bill and let them know he's going to be late with his rent and doesn't know what he did with his checkbook. They had already disconnected his cable. and I had it just turned off. Told them he can't pay. So, he has bad credit? He's living on nothing. taking Social Security at 62 with an unstable work history. Rent is 30% of his income.. I took care of my mom when she died, now I have to take care of him because I"m the last of the family and of course the girl. my oldest brother is in Florida and is  no help. We text ... and I feel resentful now. Why do I have to help everyone in my family die? I don't know if he could die any day or if this surgery could help or it will kill him. 

Hello KJ and any others who have been dx with choliongiocarcinoma. My husband 60yr old was dx june 14 2016 withinoperable intrahepatic choliongiocarcinoma.On July 12 he had y90 to 10cm+ tumor right lobe. July 21  had rfa to 4 small satellite tumors 2 in right 2 in left lobe, effectively oblieratd. July 28 started 14 day treatment chemo as  gem/cis, md anderson protocol. 2nd petscan showed no light up of ca and mri 11/3 remarkable response, significant shrinkage. This thursday 10th chemo then 4 phase ct scan to see if more shrinkage, then assess  for resection. He continues to work full time. We are both in medical fields. We are grateful beyond words at this. We will keep you posted as we continue to find the best course to follow.