Thank you to everyone for their kind words and encouragement. It has been tough and it's a long road ahead but I know we're all going to be ok!
Just wanted to give an update on what happened with my dad. He went back to his onco the next day (Tues) for more fluids. His creatinine had gone up even more and he had to be admitted to the hosp for fluid therapy to see if they could get his kidneys working again. Unfortunately, his kidneys continued to worsen and could not be fixed. Therefore, he could not receive chemo and his doctor gave him a prognosis of only a few days to live. He continued to decline into the weekend and got to a point where he was non-responsive. My boyfriend, my sister, her husband and I spent the night in his hospital room on that Saturday night because we knew it wouldn't be long. He passed away peacefully on Sunday around 11:30am surrounded by his family with my mother and me on each side of him. It is very devastating that we lost him so soon and a very tough time for our family. We love him very much and are very sad that he lost his short battle with this devastating disease.
Thanks to everyone for the advice. Quick update: My dad went downhill over the weekend. No energy at all, all he does is try to sleep and won't even sit at the table or sit up to eat. He is still very yellow and painful. We made him call his dr answering service yesterday and they had him come in this morning. My mom said his oncologist says all his symptoms are because of the cancer....well duh! So he got IV fluids and some pain med and med for his appetite. His creatinine was 4.4 from dehydration so they're having him go in tomorrow for fluids too. He also started having diarrhea. We are trying to make him drink and eat more. But I am still very worried because he looks so bad and he is very stubborn and frustrated so it's hard to make him do anything. I am just hoping we can get some good information from our appointment on Wed in Charleston...
My dad has been recently diagnosed with cholangiocarcinoma is seeing a oncologist in Columbia, SC. He has not started any therapy yet because he is going to see an oncologist at Medical University of South Carolina in Charleston next week. I have heard it is a good hospital, but I just wanted to see if anyone knows of any other good hospitals in the southeast US. I just want to make sure that my dad is getting the best care possible. And if anyone is interested in our story I have posted info on the introductions page. Thanks so much!
Again, thanks to everyone for everything. I know I will need continued support because usually on the outside I am very strong but there are times at home when I just have to cry and I really need an outlet. I was also wondering on what everyone thought were the best hospitals for this cancer? I know that's kind of a vague question, but my dad is seeing a oncologist in Columbia, SC and he is going to see an oncologist at Medical University of South Carolina in Charleston next week. I have heard it is a good hospital, but I just wanted to see if anyone knows of any other good hospitals in the southeast US. Thanks so much!
Thanks to everyone for the advice and well wishes. Andrea - I am from Columbia, SC and my dad will be seeing another oncologist in Charleston next week. He has some follow-up appointments with his doctors this week and I have already emailed him several questions I want him to ask them regarding his symptoms, diet, etc. And my boyfriend and I are going to write down a list of questions for the appointment next week and bring a notebook to write everything down. I have taken the role of my dad's "advocate" so I am trying to do everything I can to make sure he is taken care of. I guess it is nice, yet sad, to know that there are other people out there dealing with the same thing. In the beginning I felt very overwhelmed and confused but I am glad I found this discussion board for not just advice, but support as well. I will definitely give updates on his status and also what the doctor next week says. I guess I am still scared because I don't know what to expect never having dealt with something like this before. Again, thanks to everyone for the support and I wish everyone else luck in their journeys.
My name is Jennifer and my father was diagnosed with cholangiocarcinoma about three weeks ago. Of course my family is devastated. He had gone to the dr because he was losing weight/muscle mass, decreased appetite, itchy skin, jaundice skin/eyes, etc. He was diagnosed by CT scan and biopsy. At first they said it was liver cancer, then something else, then finally they told us it was cholangiocarcinoma. We've been having a really hard time getting information from the doctors because they seem to never be available, etc. After he saw his oncologist the day after he was diagnosed, he was admitted to our local hospital. He was put on IV fluids, antibiotics, etc. He also had two blood transfusions due to low hemoglobin. After his doctors all reviewed the CT they said it was affecting 2/3 of his liver and appears to be in his lymph nodes. He had a procedure while he was hospitalized to put a stent in to drain the bile. He was sent home after several days in anticipation to go to MUSC to see a specialist there. Long story short, he has an appointment on 3/23 to see a medical oncologist.
Also, he is getting very jaundice again, still has decreased appetite, lack of energy, shortness of breath, and swollen ankles. I know this is a lot of information, but I just wanted to get advice/feelings on my situation and see what other people's experiences are with disease at this stage. I have no idea what to expect and the doctors have not really told us much either. I'm hoping that our appointment next week will shed more light on things.