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12/29/2016 Latest post:
My adventure started in May 2016 when I had my annual orthopedic check up for my hip replacement (April 2013), back issues and the 3 month follow up for shoulder surgery that happened in February. I have an annual MRI of my upper spine to monitor arthritis and disc degeneration. My doctor, Dr. Timothy Doerr discovered an abnormal spot in the upper right abdominal area. He strongly recommended that I have a follow up study done by my primary care doctor. I had a CT scan and then MRI of my liver, then in mid June Dr. Davis called me in to discuss the findings. Bonnie and I were packing the camper for a trip to the Navajo reservation for the Sheep is Life festival. Dr. Davis recommended that I didn't go. He referred me to a gastroenterologist. So Bonnie went on the trip as she had to deliver lambs that she had sold, and I went to the doctor. I got in to the doctor in 3 days (Friday) where I was informed that they suspected that I had bile duct cancer. I was referred to the only liver surgeon (Dr. Barton) in Idaho and scheduled for a ERCP and EUS test. These are endoscopic procedures where imaging and biopsies can be done from inside the bile duct. I couldn't get in for that test for 3 weeks, as there are only 2 doctors that perform the test and it is done only once a week at St. Luke's in Boise. On Monday I got call that Dr. Barton had been in an accident and would not be able to perform surgery until September. So I was referred to the University of Utah liver transplant department. So it was standby for 3 weeks. I flew some air attack for the Boise NF and that helped keep my mind from fixating on my liver. I had the ERCP but Dr. Hammerle didn't do all of the tests as he didn't want to ruin my chances for a transplant. He had consulted with Dr. Barton (the liver surgeon) and they concluded that I possibly could be a transplant candidate based on protocols from the Mayo Clinic where Dr. Barton had been previous to St. Luke's. Still no word from Utah. Next we meet with Dr. Dan Zuckerman who is an oncologist at St. Luke's MSTI. We were informed about bile duct cancer (cholangiocarinoma) and that he and Dr. Barton had looked at all of the imaging and ERCP results and concluded that I was not a transplant candidate. It is a rare cancer with around 2.1 cases per 100,000 people for the sub category that I have, which is inside the liver (intrahepatic - iCCA). The iCCA makes up about 10% of the total bile duct cancers. The prognosis typically is not very good as diagnosis is difficult and most patients don't see a doctor until the disease is very established and they are experiencing liver failure. Dr. Zuckerman said that I was in a different category and that there wasn't an medical emergency requiring immediate treatment. He wanted to see what U. of Utah had to to say. When we got home there was a phone message from Utah. I called back and was told to make an appointment with Dr. Robin Kim, who is the Chief of liver transplantation at University of Utah hospital. So at the end of July we drove to Salt Lake City for a Friday afternoon meeting. Dr. Kim went through all of the imaging going all the way back to 2007 when I had a gallbladder removed. It was a very business like discussion. He showed us some spots in the right side of the liver that weren't normal. He said mater of factly- "those are benign , because if they were cancer I would be dead already". Then a CT scan from 2012 showed even more spots. He said they didn't look benign but they didn't look like cancer either because again I would either be very sick or dead. Then this years scan showed a blockage in the bile duct. He was concerned with that but couldn't really see any solid tumor. He had to rule out cancer in the rest of the liver before doing any surgery. If I was cancer free in the right side of the liver then he said that he would remove the left lobe of the liver. Even if the blockage was caused by cancer it was the best chance for a cure of the iCCA. Recurrence after resection can occur in 30 to 50% of the cases. The next step was to return to SLC in 10 days for a liver biopsy. The biopsy procedure was easy as we had lunch at the Red Iguana 2 after the procedure. Waiting for a week to hear the results was tougher. Finally Dr. Kim called and started off with - "good news, you don't have cancer, but we still have to do surgery ". So I was scheduled for September 2. I woke up in the recovery room with Dr. Kim telling me that he didn't take out the section of the liver because he found 2 spots outside of the liver on the abdominal wall lining (peritoneum) that tested positive for cancer. He found it with an ultrasound test before starting the resection. He also said that the spots were small, not on any imaging and not easily picked up by CT or MRI scans. Pretty disappointing. So now I am, by definition, stage 4. I Spent the next 5 days trying to get my guts working again. Lots of laps walking around the hallways. The next step was chemo. I asked whether the treatment is any different in Utah than in Boise. The answer was no, so I said I ain't coming back. Started chemo 2 weeks later at MSTI with Dr. Zuckerman. The first line treatment is chemo with 2 drugs infused on week one and two and then 2 weeks off and start the cycle again. The drugs are gemcitabine and cisplatin. This became the standard of care a few years ago after a clinical trial in England. There isn't a standard of care if this treatment fails or it becomes too toxic for me. Well, so far I haven't gotten sick and my hair is still attached. I typically go for a walk on the Boise river greenbelt or go fishing after infusion. I feel a little rough for a day or so, but overall everything is fairly normal. My first check up scan was fairly positive as it showed no growth in the tumor size and no additional spread. My liver function test seem to be in the normal range. The chemo does knock down the immune system, so far it hasn't been a big problem. So that is my adventure from May to December. We will update the journal when things happen. So far, so good. I am optimistic and as my late friend and ski bum partner Patrick Hartburg always said - " bash on regardless"
We are in no need of donations as my health insurance is excellent. There are two organizations that fund research into cholangiocarcinoma. They are the cholangiocarcinoma.org foundation (based in Salt Lake City) and targetcancerfoundation.org (based in Boston). Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.