Thank you all so much for your kind words and advice. I believe we are going to schedule a second opinion at the James Cancer hospital. All of our relatives have advice, as I am sure you can relate.... They say the mayo clinic or Cancer center of America is the best place for cancer. But I don't think they understand how rare this cancer is, they keep saying things like we're gonna beat this or that certain diets or hospitals are what she needs to get cured. They say the James isn't a good option for cancer patients b/c its a research facility. I feel like something like that might be her best option. Her oncologist has said that she is too weak right now to handle radiation and chemo together. So he said either way when she is done she'll be starting chemo. He is totally on-board with a second opinion and recommended the James.  Any and all advice is much appreciated. She had a really bad day today, vomiting bile, no energy and feels out of breath and dizzy when she does anything. I feel like I am in a constant state of worry. On the plus side she spent the day cuddling her youngest grandson (2 months) and baby cuddles are great medicine!

Thanks Susie for that suggestion! I know her oncologist has consulted some of his colleagues at The James Cancer Institute at The Ohio State University. I do feel comforted that he has had a lot of experience with this type of cancer, as of 3 weeks ago I had never heard of it. I am having a hard time with the wait and see perspective. I am also a total control freak and now I have zero control. I will look into the Cleveland Clinic, I have always heard great things about them. Thanks again!

Not really sure where to start, My name is Rachael and like the subject says, my mom was just diagnosed with CC. She had been having indigestion-like stomach pains all summer (which ended up being caused by gastritis) but through all of the tests she had done they found a spot on her liver. She had it biopsied and it was cancer, they confirmed it was CC after an endoscopic ultrasound. After a few other tests, we found out it had metastasized to her lungs, liver, and bones. That was a pretty devastating 2 weeks. When she had her endoscopic u/s done they told us they would probably try and put a stent in to help her bile flow. I saw her 3 days before I took her to that appointment and she looked tired and run down, but otherwise great. The morning of the u/s her skin and the whites of her eyes were so yellow I couldn't believe it. After the u/s was done the Dr. came in to tell me that they were going to try to put the stent in but wasn't hopeful that it would work. Her tumor is all over the "tree branches" of the bile ducts in the liver. It has caused the part that flows from the liver to the pancreas to collapse and all of the tops of the "limbs" as well. Long story a little less long, the stent was placed but isn't doing anything.

Our next stop was the radiologist, He basically, in a very tender way, said this couldn't be any worse. He wanted to start radiation on the tumor asap. Just to see if it would shrink it enough for that stent to start working. She just completed day 2 of 10 treatments.

I am so worried, the end of July she was normal. We would run around and shop till we dropped. She seemed so healthy. Now she has lost 20 pounds in 3 weeks, can't really eat a thing. She is in a lot of pain and discomfort, mainly due to her sternum which I guess had a heavy concentration according to her bone scan. She is on pain killers and they are radiating that area too. The past 3 days she says it takes 3 hours to get herself ready in the morning, because a simple task makes her dizzy and out of breath.

I just feel like everything is happening so fast. The Dr.'s don't and won't even make a conjecture as to how long she may have left, how hopeful they are with the treatment having any effects. I know from what I researched that this cancer is hard to predict, but I just wish one of my questions could be answered. If she doesn't have long left, there are things my siblings and I want to be able to do with her. I am sure you can all relate. It's so scary watching someone tumble so quickly.

A little info about her, she just turned 61 Monday and has 11 grandchildren who just adore her. Thanks everyone for listening! I am glad I came across this site.