Hi everyone,  I have been watching the board.  I have CUP that has been treated as intrahepatic cholangiocarcinoma for the last 13 months.  It started as a radiating pain in the left hepatic lobe and biopsy was adenocarcinoma.  Tumor was 4.3 cm.  I am at the largest cancer center in the U.S.  I finished 2 weeks today with 10 days of radiation to a lytic lesion metastes to my T6 spine.  I was told that it would burn my esphogus  but I should drink milkshakes and drink the medicine that they prescribed to deaden my esophogus.  This is without a doubt the most difficult experience that I have had.  The pain when swollowing was almost unbearable, and I am tougher than a Texas Boot.  I went to my local emergency room for IV fluids on Monday for dehyration.  I had vomiting and diarrhea since 4 days after the end of treatment.  I am finally starting to feel better, and am drinking as much gatorade,water and tea as I can.  I can eat a little soft food now, I am very hungry, but cannot eat due to the pain.  I also started TARCEVA 2 days after radiation started.  I felt considerable burning pain in my entire abdomen about the same time as the vomiting and diahrrea started.  My onc said to discontinue the Tarceva and it was stopped 6 days ago.  Everyone is different and I don't want anyone to think that everyone goes through what I have with the therapy.  I have had Gemcitibine, Cisplatin, and Folfox 6 and had virtually no side effects with these chemos.  I have written enough for now.  I have prayers for all the people with this
and hope that researchers can destroy it.

I have been reading posts for almost 5 months,  this is a very informative site and I appreciate all the people here.  I have finally decided to register.  On April 2, 2010, I had radiating pain in my right side, nausea, vomiting and diahrrea.  I thought I had either something caused by the procedure I had 2 days earlier or food poisoning.   On March 31, 2010, 2 days earlier I had a flexible sigmoidscopy dialation to stretch a anastomic stricture that I have had for years.  This is due to surgery for Crohn disease that I have had since 1965.  I am 63 years old, and active.   I have been seen by a gastroenterologist for the last 6 years, so I called the GI, and the GI that was on call said you have Crohn disease and called in some Prednisone.  At that time I was taking azathioprine and entocort for the Crohn's, so I was severely immunocompromised.  So 4 days later I made an appointment with my regular GI because I did not feel 100%.  I was sent for an ultrasound to rule out bilary colic and they found a left liver mass of about 5 cm in size.  I then had a CT scan confirming a left liver mass of 5 cm and a small 1 cm lesion that was anterior to the large mass.  I had a normal CEA, normal alpha fetoprotein and a CA 19-9 of 4435.  A liver biopsy was performed revealing adenocarcinoma, but they could not determine if this was metastic.  The test revealed no cancer anywhere else.  I have been taking Liver Function Test for the last 6 years because of the azathioprine I was taking, and they have always been normal.

I am sorry this is so long, I saw a oncologist and surgeon, was retested  for everything, and am now being treated for cancer of unknown primary, presumably cholangiocarcinoma.  I have had only 1 biopsy.  The surgeon did not think resecting was possible due to suspicious nodes, however the oncologist is not sure that these nodes are suspicious.  I am taking gemzar and cisplatin, until last week, when the test showed possible kidney damage, so they took me off cisplatin temporarily to recheck my kidneys.

I do not have bilary dialation.  I have bilirubin total of 0.3.   I have had no pain since the original pain on April 2 and 3rd, 2010. My liver function test is still normal with small variation since I am taking chemo.  I do not itch.  I am concerned that I am being treated for somthing that I do not have.  I have not lost weight, in fact I gained about 15 pounds,  I was  so hungry.  Does anybody have any suggestions?  I really would like a definitive diagonosis.  I know this is a reach and a stretch, but what if I have something else?  Does anyone know a great diagonostician, or liver specialist.  Sorry this is so long, but I feel stupid for doubting my diagonosis, and would appreciate any help.