aggiemom
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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.
