Please Help

In Dec 2007 my father was diagnosed with Bile Duct Cancer. He was really sick uo until 2 weeks ago, he's stronger than ever. He has been seeing the Oncologist and she says they are not going to give him any treatment and we dont understand why? Its like they have just given up. We are totally confussed and upset. We are in Canada and have asked the Dr's if we should goes to the U.S. for a second opionion and they say no its not worth it. We dont like their "bed side manor" this is my dad's life on the line its not a cold. Does anyone have any advice or a re their any Bile Duct Cancer survivors or people who have lived for more than 2-4 years?? Please help. We pray for him everyday. Also he is only 60 years old.

I am sorry to hear about your dad.  My mother-in-law, who i worked every day with for about 20 years was diagnosed with bile duct cancer aug. 20, 2007, and passed away dec. 7, 2007, she was 67.  She had been working 12 hours a day with no problems up until her diagnoses.  The doctors at st. Lukes hospital in houston, tx did put a drainage tube into her liver, and i do believe this gave us more time.  If you need to talk anytime, i have been where you are.Good luck

 

Go on-line and look at MD Anderson Cancer Center in Houston, Texas

or Cancer Center of America in Oklahoma  in the  US or in Chicago, Il

Don't give up. Always go for the 2nd and 3rd opinions.

St. Lukes Hospital in Houston Texas is also great.

Good luck

My ex-husband passed of Bile Duct Cancer about 1.5 years ago.  You need to contact MD Anderson in Houston. 

Why MD Anderson?  My sister has bile duct cancer right now and it has spread to her bones and lymph nodes.  How long did your husband live with it?

My sister, 67 y/o, was diagnosed with bileduct (cholangiocarcinoma) in the beginning of this yr. January 1st. She was given Gemzar (chemotherapy), the plan was for 7 wks on, 1 wk off, 3 on 1 off 3 on, etc.

She had three, skipped the 4th due to low blood count, had the 5th skipped the 6 (low blood count) and was in the hospital too weak to have the 7th even tho her count was okay.

She went from the hospital to rehab (nursing home) and today is being moved to long term nursing home (same facility). I think the rehab move, was for her benefit as she would not have agreed to go to a nursing home.

Since no chemo she is feeling sooooo much better but still remains pretty weak. She saw her oncologist last Tues and he says he would not continue with chemo until she is stronger. However, When I talked with him he said he would not recommend additional chemo, as the cancer markers (CA 19-9) were worse after the chemo indicating the chemo is not effective for this type of cancer- at least not effective for her.

Her tumor is around the pancreas and bile duct, she had a plastic stent placed in her common bile duct and that was replaced just 2 months later with a metal one as her bilirubin numbers were climbing and she was getting a bit jaundice and nauseated, etc.

She is eating good, feeling good and is gaining in her strength. It is almost as if she doesn't have the cancer any more....but the numbers don't tell the same story.

Dr's say she is not a candidate for surgery (whipple), so her only recourse according to oncologist was chemo....Gemzar was the treatment of choice, but some oncologists prefer two chemos together...Gemzar and maybe Xeloda or some other type depending on the patient and their specific indications.

I contacted Mayo Clinic and found them to extremely helpful and got an appointment for my sister but she opted to take the chemo and not wait another week to go to MN to Mayo. But I would highly recommend going somewhere. Get all your dad's records from the hospitals and doctors offices and call one of the cancer treatment/research hospitals recommended in the other posts or Mayo and hear what they recommend. If Whipple isn't an option for your dad, then they do have clinical trials going on all the time and just maybe one of them could benefit him...if as the doc says they have no solutions for him.

I pray for the best for your dad and for your family.

I know God is good and that Miracles do happen all the time and your dad could be one of them as could my sister. God is in control and we don't know the best most often, and if we can give it to God, He will most definately do the right thing. He can and will intervene in this terrible illness, if that is what is best for the individual. Sometimes we think that we know what is best, but...................we are kidding ourselves.

I would like nothing better than to have my sister be well again and be rid of this illness. My neighbor died last week...at 98 y/o. I was sad, so sad especially when I returned from visiting my sister out of state to see her house (empty). I cried...I remembered and rationalize...she was old, she must die sometime...this was her time... I'm still sad...and if I could have had my choice, I would have had her live...but that would be for me, not for her as she was tired and her knees had been bad for a long time. In fact she commented that if she would have known that she would live so long she would have had knee replacements at age 80 when the dr recommended it. *grin*

Blessings to you with your dad..sorry for the ramble, hope you can get some small thing from it all. Look for the blessings and the growth along the way.

My sister's voice

eaglessoar 

 

 

 

 

 

On 4/2/2008 praying75 wrote:

In Dec 2007 my father was diagnosed with Bile Duct Cancer. He was really sick uo until 2 weeks ago, he's stronger than ever. He has been seeing the Oncologist and she says they are not going to give him any treatment and we dont understand why? Its like they have just given up. We are totally confussed and upset. We are in Canada and have asked the Dr's if we should goes to the U.S. for a second opionion and they say no its not worth it. We dont like their "bed side manor" this is my dad's life on the line its not a cold. Does anyone have any advice or a re their any Bile Duct Cancer survivors or people who have lived for more than 2-4 years?? Please help. We pray for him everyday. Also he is only 60 years old.

Hello, Praying 75...If you want some direct answers you should give us more information...there are many stages of Bile Duct Cancer. If your father is in stage IV..it's serious. If the Oncologist doesn't want to treat it, she surely must have a reason which you have not mentioned to us. I understand smoetimes doctor's bad bed side manors..I find it hard to believe a comment that "no it's not worth it" came out of the doctors mouth. I'm sure he said other things that you may not have heard. There is no reason to be confused and upset...sit the doctor down..with note book in hand ask questions and write down his responses. Tell him to be honest with you, if your father has weeks to live, tell him to say so. My wife also had Bile Duct Cancer in the hepatic duct (Klatskin Tumor) very deadly issue and had 6 weeks to live, that was 5 years...we went to UCSF in San Francisco and today she is doing well. Yes, if the doctors do not satisfy you and you think there is still a chance for a longer life, get a 2nd opinion. By the way my wife was 53 at the time of surgery, she will be 58 this year.  Again, if you want more direct input, you will need to tell us the entire story. Take Care...Leonard from Alamo, California    

 

On 4/2/2008 praying75 wrote:

In Dec 2007 my father was diagnosed with Bile Duct Cancer. He was really sick uo until 2 weeks ago, he's stronger than ever. He has been seeing the Oncologist and she says they are not going to give him any treatment and we dont understand why? Its like they have just given up. We are totally confussed and upset. We are in Canada and have asked the Dr's if we should goes to the U.S. for a second opionion and they say no its not worth it. We dont like their "bed side manor" this is my dad's life on the line its not a cold. Does anyone have any advice or a re their any Bile Duct Cancer survivors or people who have lived for more than 2-4 years?? Please help. We pray for him everyday. Also he is only 60 years old.

Hi,

Hi,  My husband was diagnosed with Bile Duct Cancer 6/07. We were sent to Mass. General, in Boston., Dr. Fernandez.  Phnominal Dr. and hospital, one of the BEST.  I ran into a few families there that were from Canada.  My husband had the Whipple Procedure done on 7/07.  Started Gemzar in 9/07,then 11/07 Five FU with Radiation, 1/08 back to Gemzar and finshed in 2/08. My husband is doing great.  Just started going back to work partime last week.  If you feel in your hearts, Don't Give Up, there are Dr.'s out there that can help. Look at the people that are on this site.  There are a lot of people that have great results.  

Please take care. 

 

 

 

Roswell Park Cancer Institute in Buffalo, NY, is participating in the exact same research program as Anderson Cancer Clinic in Houston, Texas.  There is NO cure for bile duct cancer. Even with the Whipple Procedure (a very long & dangerous procedure) the life expectancy is still about 2 years.  Even surgery plus chemo is not a cure. This clinical research program may extend the life for a few more months. This gives the patient & family time to adjust to the shock of impending death.  As months pass on, you come to a realization that the doctors were right and you accept the death sentence.  That means you want quality of life more than quantity.  That means you love your family as never before, you visit them as never before.  You come to realize that you DO NOT have time for anger, hatred, or petty grudges.  You make peace with those around you and with God.  After all, you have been given the gift of knowing your time is short & are able to make peace --- some people never are given that chance to make peace before they die.