On March 10, Butch had a blood clot in his leg which traveled to his lungs, and broke off in many pieces - a pulmonary embolism. The next day, while he was in intensive care, we got the results of a liver biopsy that was done on March 6th, following an ultrasound which showed a mass on the liver - a diagnosis of bile duct cancer (chlangiocarconoma) , which lead to a 7 centimeter tumor on his liver. Here in Upstate NY, not much is known about this rare kind of cancer, so we made arrangements to go to the Mayo Clinic in Rochester, Minn., upon recommendation of some of our Doctors. Our appointment was for April 7th, and we saw Dr. Lewis Roberts. We were there over 2 weeks, for testing and final diagnosis. After a biopsy on April 17, they reported the lymph nodes were negative, and Dr. David Nagorney agreed to go ahead with Liver resection on April 23, BUT , he needed to do a laparoscopy first, as he was suspicious of a malignancy in the lymph nodes , as his CA 19-9 readings were VERY high - 20000 at Sayre Packer back home, 30000 at Mayo, and he felt that indicated a malignancy aside from the liver tumor (normal reading is under 37). The tumor - by this time - was 8 centimeters, but was all in the right lobe of his liver and the portal vein was Ok. He did 3 lymph nodes, and the 3rd (a nodule in the diaphragm) WAS malignant, so they aborted the operation, telling us there was nothing they could do for us but chemotherapy, so we came home for treatment. Their diagnosis - cholangiocarcinoma - metastasis, probably as a result of Primary Schlerosing Cholingitus which he was diagnosed with in 2004.
Our oncologist here followed Mayo’s recommendation of gemcitabin along with xeloda, and Butch has begun treatment . The CA 19-9 reading is 48000 at the start of treatment. He has a blood clot in the same leg the initial blood clot moved from, which has caused a lot of problems (cellulitis) , but seems to be adjusting to the chemo (problems with white cell counts - all that stuff).
In the meantime, I wrote the University of Pittsburgh Medical Clinic (among many others), and they have responded to us, after we forwarded them all the CD’s of the tests, and the medical records, saying they believe that they can do a liver resection - a Dr. Gamblin - Asst in charge of the dept. Butch has to be off chemo 3 weeks, though - so - next week is his off week anyway - 2 on, 1 off. He will set out the next cycle, and then we go to Pittsburgh. Part of the problem is - we were 3 weeks in Mayo, and we are 4 more weeks out now - what has changed since those tests Dr. Gamblin looked at?
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