HRCNews
03-04-2001, 04:03 PM
My 45 yo cousin has inrahepatic bile duct cancer with some spread to gall bladder and lymph nodes. It is not resectable and she is on chemo, but I don't know what kind. She goes once a week. She has been told that there is not great expectation of improvement from the chemo. Anyone have any knowledge of new or cutting edge treatments for this? She also has a very limited kinds of foods she can eat, like just chicken and steamed veggies, any suggestions for broader food items that might be palatable? Thanks so much.
My father is in the same situation. We are going to Sloan-Kettering cancer center in new york next week, I will let you know if they know of anything new
timsworld73
02-01-2004, 10:59 AM
First my mom is kinda in the same boat you are in but a little different. ASK YOUR DOCTORS SOME SPECIFIC QUESTIONS for me. What stage was the cancer in the gallbladder(Im sure they took that out didnt they?) What stage is the bile duct cancer. Why is it not rectable(Have them pull out a map of the inner workings of the liver and have them tell you where it is at and why they cannot take it out. 45 is not acceptable to put on chemo and say there is nothing more they can do for you. NOT ACCEPTABLE..in my book anyway. There are things like RFA, Cryofreezing, Chemoembolization, and other things they can do but only at certain hospitals. We went to UCLA when my mother was diagnosed with gallbaldder cancer that had spread to her liver. They said that the tumor was about 5 1/2cm(a little to big to resect right now, needs to be at 3 or lower) and has invaded her portal vien therefore at this time surgery is not an option. The Dr. said I dont think surgery will ever be possible. I stood up and said.... You have the ability in the medical community to transplant a liver to a 80 year old person but your telling me you have nothing for a healthy 49 year old women? I said right there...That is not acceptable. I asked to see a surgeon anyway. The sureon said to start chemo, get the tumo shrunk down, radiate the tumor in the portal vein and then come back and he will give serious thought on doing surgery to remove it, or RFA, Cryofreezing or one of the other options. So I tell you not to accept something like that. Read everything you can on the subject. If you want to know how my mothers started read the thread that was started by timsworld73 and it is called Mother just diagnosed w/ Liver Cancer.
Keep me informed.
Tim
In my book 56 is way too young to be told to go home and try to stay comfortable. My dad went from being completely healthy 3 weeks ago, to staying in bed all day, tired and feeling crummy from chemo, not eating, and taking pain pills around the clock. We are leaving to go to Sloan Kettering cancer center in New York next week, and I am worried about my dad even making the trip. His health seems to be deteriorating so quickly. I am not sure if this isn't in part to the chemo. He was only diagnosed 3 weeks ago. This seems unbelievable, and at the same time VERY unacceptable to me. We are from nc, so this is going to be a long trip to ny city. I have done a lot of research on this hospital, and they are doing a lot of new things also-like the RFA, alcohol injection,and crofreezing. I just hope that some of this may work for us. I am beginning to prepare a list of questions to ask the doctor, do you have any questions that may be helpful in asking the doctor? There are just so many, I don't know where to begin.
timsworld73
02-03-2004, 10:04 AM
My mother is dead tired also. She lost weight like crazy. Her total bilirubin(liver test) went from .6 to 4.5 due to dehydration because of the side affects from chemo. She has not lost her hair or anything but she takes her chemo(2 of them) via IV. She is taking 5 FU 24 hours a day, and cisplatin once a week. the one that gets her is the cisplatin. more side affects. nausea and vomiting fatigue. So her oncologist gave her Megace to stimulate her appitite(takes about 2 weeks but works) she has put back on 4 pounds in a week. Dr. also told her to take Boost Protein Drinks. Its a juice and not too bad, but gives them protein they need. It seems to have helped her along with Noni juice. Her streangth is getting better. If there is anything you need let ne know...Tim