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Bile Duct Cancer

cvertz
Posts: 5
Joined: Feb 2010

My wife was diagnosed yesterday with bile duct cancer. I have ready so many testomonials about people who have made the right decisions. I want to know what should our next step be, we are already looking for a second opinion but with so many out there it is hard to find the right one. We are currently living in Illinois but are willing to go anywhere we can to get the best treatment for her. She is only 26 years old. If anybody has any information that would help our situation it would be greatly appreciated.

HES4C
Posts: 1
Joined: Oct 2009

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.

Tina Blondek's picture
Tina Blondek
Posts: 1565
Joined: Nov 2009

Hello,
Welcome to our csn family. I am a caregiver for my dad, Ray, 71 beat ec cancer in March 09, now has mets to his liver. He spent 8 days in the hospital the week before Christmas with a blocked bile duct. Had surgery to place a stent in blocked duct. Also has tumors on his liver. He is now taking an oral form of chemo called xeloda. So far so good. This chemo worked for his ec cancer. I am so sorry to hear that your wife is going through this at such a young age! Get all the info you can. Hes' post should help tremendously. Definitlely take her to the best cancer center you can. One that specializes in liver cancer would be the best. Coming to this site will prove to be a great asset to you both. These people have been there and done that. Keep us posted. Hugs to your wife.
Tina

cvertz
Posts: 5
Joined: Feb 2010

It is good to hear that the chemo is working on your father. We are currently taking her to the University of Chicago and the Mayo Clinic. I am glad that there is such a site to help us get information from people who have been fighting this disease and are winning. Thank you for your time.

rowena32
Posts: 18
Joined: Dec 2009

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.

Tina Blondek's picture
Tina Blondek
Posts: 1565
Joined: Nov 2009

Hi Rowena,
I know you are making the right decision! EC stands for esophageal cancer. The xeloda did work for the ec, now we are trying it for the liver cancer. This time around, dad is having alot more side effects. He has 3 more days of treatment, then will have a pet scan to see how well the chemo worked. My dad also has a metal stent in his bile duct, as well as his esophagus. I am not familar with photodynamics. Best of luck to you.
Tina

rowena32
Posts: 18
Joined: Dec 2009

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

mrslar
Posts: 9
Joined: Mar 2010

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.

luvinlex's picture
luvinlex
Posts: 4
Joined: Jul 2016

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. 

mrslar
Posts: 9
Joined: Mar 2010

I pray for each and every one of you. My brother, who is 43 years old, had a Whipple's procedure at Johns Hopkins last Friday 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.

cvertz
Posts: 5
Joined: Feb 2010

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.

renatka
Posts: 7
Joined: Jul 2010

could you please tell me what the Doctors from Mayo Clinic said.I have the same cancer.I'm with Northwestern but considering go to Mayo.

Joliedog
Posts: 1
Joined: Dec 2015

I have it too. I have chosen alternative therapy. Diet and supplements are keeping me under control. I had suger by to rp e a tumor and after a few rounds of chemo I said no. I do not believe chemo will help ever. see a naturapath. Good luck!!

KJinFLA's picture
KJinFLA
Posts: 2
Joined: Aug 2016

I was just diagnoised with interheptic cholangiocarcinoma. It makes me sad there is no one on this site who has had the TheraSphere radiation beads. I wonder how long they keep the cancer from coming back after surgery. I'm a patient at Moffitt and I'm also going to start taking Essiac. Does anyone out there know about the Essiac or TheraSpere? Peace <*** src="http://csn.cancer.org/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/emotions/***/smiley-kiss****" alt="Kiss" title="Kiss" border="0" />

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