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Bile duct AND gall bladder cancer

dads daughter
Posts: 1
Joined: Jan 2010

I am wondering if anyone has been diagnosed with both bile duct and gall bladder cancer? My dad went in for an ERCP last January. They tested him for pancreatic cancer and that came back negative. They were about to do surgery to remove his gall bladder when his test results came back positive for cancer. They found in both his gall bladder and his bile duct. He had surgery to remove the gall bladder and part of his liver along with the bile duct. We thought they removed everything but it was recommended he do radaition and chemo as a precaution. Now, almost a year later, the cancer has metasticized in his liver and he has been given months to live. He is going to try one of the =platin chemotherapies. He had done xeloda but only a couple of doses as he got very sick in conjunction with six weeks of radiation. After that he was on gemzar for 12 weeks. They never really "staged" his cancer. All I know is originally it was not in his lymph nodes and now it is. I am looking for specialitists we might go to for a second opinion. He is currently going to the Ireland Cancer Center in Cleveland. I am thinking about trying the Cleveland Clinic but wondering if we would be better off pursuing the Mayo Clinic or somewhere else? Any insight anyone can provide would be helpful.
Thank you and God Bless you all as you fight your courageous battles.

klnh0126
Posts: 13
Joined: Nov 2009

My Mom was diagnosed with gallbladder cancer this past Oct 21rst after having a routine gallbladder removal. We were shocked to say the least because we never heard of gallbladder cancer. It was all throughout her gallbladder and in her bile duct. She was scheduled for a duct resection but after exploring her abdomen where the gallbladder was removed(laproscopic)they discovered cancer at the ports where it was removed and she no longer became a surgical candidate. We are at the Cleveland Clinic and her oncologist is Dr. Kim. He says she is stage IV and chemo is her only choice right now to buy her the most time. She chose the most aggressive choice which is Gemzar and Oxaliplatin every 2 weeks. She has had 3 treatments and so far is handling it pretty well. Not without side effects but we were expecting worse.

We were going to go to U.H. for a second opinion about treatment but my mom's internal medicine doctor states the oncologists she has is very good and U.H. and Cleveland Clinc work as a team, so to speak, when it comes to cancer. (Also her insurance is not "in network" for U.H., not making it impossible to go but more expensive) Also, it took a while to get appt. for resection surgery after we found out it was cancer and time to get oncologist appt. so we wanted to get started right away without further delay.

I also am wondering if we should explore somewhere like Mayo Clinic or somewhere. It is so overwhelming. I go online and there is so much info I don't know where to start. What is credible or not. Also, will going so far from home make any difference or not. I feel like I don't want her so far away for any time unless I knew for sure it would make a difference. We are still fairly new to this diagnosis and my mom is not showing signs of being as sick as they say she is so I sometimes feel maybe they are wrong. I, of course, know that is not the case but more the fact I don't want to believe she has such a terrible disease.

My thoughts and prayers to your Dad and please keep in touch so maybe we can be of help to each other. P.S. What is ERCP?

KatWV
Posts: 1
Joined: Jan 2010

I am going through a similiar situation. However, with an exploratory surgery at Shadyside in Pittsburgh we were able to determine that my Grandmother's cancer originated in the bile duct and spread to the gallbladder and stomach and so on. She did two clcles of gemzar and her condition wasn't getting better. They went on to Xelodo combined with gemzar. After one round she was done. She is nearly 74 and isn't willing to be that sick when it isn't doing anything for her. She was stage IV by the time someone figured it all out. They at first thought it was her gall bladder. I can tell you that through research and many doctors I have found out that this is as ugly as pancreatic cancer with about the same prognosis. The reason why it is hard to find a lot of information on it is because only 2000 people a year are diagnosed with it versus 37,000 with pancreatic cancer. They treat it just like they would pancreatic cancer because it responds about the same way abd they haven't had enough people to study. It is usually not found until it is too late just like pancreatic cancer.

I am sure you know this stuff. But to answer your question about some where to look into for a second opinion...an individual in the bile duct cancer discussion site mentioned Cancer Treatment of America in Tulsa, OK. They said they know nmore about bile duct cancer than any where else. The individual's aunt went there. It was an August 21, 2009 posting. My grandmother couldn't handle traveling to her chemo treatments so there was no way she would fly from WV to OK. I found this when I, like you, were looking for options and answers. We are starting hospice this week. If you would like to send the individual mail they go by "mb430.".

I wish you both the best. May God be with you and your families to give you strength and peace within your journey.

emoraver
Posts: 1
Joined: Jan 2010

My partner was recently diagnosed with adenocarcinoma of unknown origin, but they think it began in either the gall bladder, pancreas, or liver bile ducts. It had spread so much throughout his abdomen that they can't pinpoint where it started.

We learned that if it starts in the pancreas or bile ducts, it's hard to determine where it began. In our case, it began in one of three places.

My partner is currently on Taxtoere, Gemzar, Avastin and Xeloda. It's an intense regimen, but he's handling it well.

We are lucky enough to be in Raleigh, NC...a hub of good research hospitals. We looked into traveling to MD Anderson or Mayo, but my partner didn't want to make the trips (he's really weak). We are happy with our doctor at the Cancer Center of NC. We got a second opinion at Duke, and it was pretty much the same as the initial diagnosis.

Bile duct cancer has a low average lifespan after diagnosis. I think I read the average was about 5 mos. If you are looking for a second opinion, I would recommend staying local. But it really comes down to what your dad wants. Does he want to travel? What are his expectations of treatment?

You may also want to call/check out the cholangiocarcinoma.org page. They have a discussion board there that could help you decide where to go for a second opinion.

So sorry you and your family are going through this.
Best wishes in whatever you choose to do.

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