Topic: Trying to learn about cc
Jan. 13, 2007 we took my husband to emergency because of severe abdominal pain. He had been itching like crazy for several days prior, but we thought he was having an allergic reaction to something. He had started experiencing weight loss and unusual fatique over the summer of 2006, but we had chalked it up to stress because his father had unexpectedly passed away and he was having a little trouble dealing with it, so to be safe, he went to the doctor and had a physical and the doctor, finding nothing out of the ordinary but the weight loss concured that it was probably stress.
That Sat. night in Jan. in the emergency room, when the doctor, after a ct scan and blood and urine tests were in , told us that she thought that he had pancreatic cancer that had metastisized to several other places, we were dumbfounded.
From that point the nightmare for us began. We had to go to our primary care doctor to make arrangements to get a biopsy done and see an oncologist. We originally went to the university of Michigan hospital, they did a liver biopsy on Jan 26 and we did not get the official diagnosis until Feb 9. They told us that they had to do special stains with the biopsy because it was not matching pancreatic cancer stains and it wasn't until they did an ERCP to place stents (he was getting very jaundiced) that they determined that it was bile duct cancer or officially metatastic intrahepatic cholangiocarcinoma. During that whole time, we were back and forth to emergency, he was hospitalized a couple of times for a few days, he was turning neon yellow and no one could tell us anything or do anything except try to relieve some of his symptoms. Being unhappy with the runaround andimpersonal treatment we recieved there, we have gone with an oncologist from a smaller hospital system, but with every bit as good credentials. My husband was told he had six months left without treatment, maybe more with treatment. He was told his conditon was not operable and was offered a treatment 5 FU with a leucavorin drip, He has just started his third round (once a week of six weeks, then 2 weeks rest) at this point everything is status quo, nothing has changed as far as the tumors are concerned.
I appoligize for rambling, but we both do not know if what he is experiencing is the norm and what else should we expect. I should also tell you, he is 63 years old, has always been in good health, has been an avid runner for many years, has always maintained a good weight, nonsmoker, nondrinker, and has always eaten a healthy diet. He has never even come close to bouncing back to normal. Hehas continued to lose weight and is nothing but skin & bone, he has a very difficult time making himself eat, he tries to keep active, but as time goes on he hasall he can do to put one foot ahead of the other. He has also had some problems with mental confusion
and the doctor did give him some medicine to help with that. He takes a time release pain killer round the clock and still has to occacionally take some breakthrough meds. He is starting to have a lot of swelling in his feet and legs and he is beginning to get jaundiced again, they tell us his stents may be getting clogged. We aren't giving up, but need to know what some of the signs of the end stage are and when should certain conditions alarm us to take action? We have been unable to get these answers. Our children live all over the country and they are very concerned. We all feel so helpless. Sorry this is so long and rambling. Thanks for being ther.