Topic: Radioembolization for unresectable tumors
My wife Valerie was diagnosed with CCC on 31 October 2006. The doctors in Honolulu where we live said that nothing can be done. We went to Sloan-Kettering in NYC and Dr. Ronald DeMatteo the heir apparent to Dr. Leslie Blumgart (the God of CCC) and a great surgeon, tolkd Valerie that there was nothing she could do, no treatment other than palliative chemo: death sentence. We asked if they ever shrink the Klatskin tumor with radiation and chemo and then take it out. He said he "had never seen a Kaltskin's tumor shrink. We went home with those words. The next phase is a long story. Let me cut to the end and then fill in the middle.
On July 19, 2007 my wife was given an arteriogram by Dr. Andrew Kennedy at Wake Radiology in Cary, North Carolina. easy to find on Google. On July 25th Dr. Kennedy injected radioactive microspheres into the Klatskin's tumor in a 1 hour outpatient procedure. A little acid reflux was the only side effect. I will let you know the outcome in about a month, but Dr. Kennedy has done hundreds of liver trumors and about 13 BDC tumotrs. He started out at Maryland where he encountered some BDC's and other doctors asked him why he was wasting his time on that disease. He knows BDC and he has pioneered radioembolization in the US and particularly against the solid adenocarcinoma tumors in the pancreas, bile ducts and liver.
We had heard that this was a controversial and "dangerous" procedure. If the injected radioactive microspheres "leak" outside the tumor, they create havoc. Dr. Kennedy explained to us that thet do a dye test before the microsphere injection as "test run" to see if there are "leaks" and then during the procedure, they can plug any leak. Plus they watch the actual microsphere injection and can deal in real time.
We think that Dr. Kennedy has just destroyed Valerie's Kaltskin tumor in a 90 minute outpatient procedure with no side effects.
So here is the rest of the story.
After being totally bummed out by Dr. DeMatteo ( a liver "surgeon") in November 2006, I hit the Lance Armstrong trail and found a Data Collection Study (DCS) at washington University in St. Louis that was focused on BDC. They were trying to gather statistics to support the Mayo Clinic research that predcted 82% cure with neo-adjuvant "sanitizing" chemo and radiation followed by liver transplant. Mayo is the pinnacle of centers for disease of the bile ducts. Not BDC but disease of the bile ducts. Since 1993 they have started to track their large aptient population with bile duct diseases. They noticed that an alarming %-age of them also contracted BDC.
We are all told that if you remove the tumor with good magins: IT COMES BACK!
We are all told that if you remove the tumor and the entire liver and transplant a new disease-free liver: IT COMES BACK!
Liver transplants for BDC are illegal in New York. Why waste a liver?
So my wife was accepted in the data collection study in St. Louis. The Dr. DeMatteo counterpart in St. Louis is Dr. William C. Chapman - top 5 in the ranks of liversurgeons in the world. Fabulous doctor. He took us into the Mayo protocol and said that he thought they could "do better" with CCC patients.
The criteria for transplant under the Mayo protocol is "no" metastasis. They do Gemcitabene for 6 weeks, IMRT and 5-FU (low dose as a radiosensitizer - not a chemo drug) and then they do a laparotomy and lots of scans to make sure that no spread has occured.
Valerie made it all the way through this rigorous program. In June she went on the transplant list with UNOs hoping to get into the 80% cure rate from Mayo.
They had her tied off for transplant on June 30th when they found seedlings on her perioneum and she was not given a transplant. Back to sqaure one. We started over.
On July 25th we think that Dr. Kennedy destroyed the Kaltskin's tumor. Since the disease has metasasized, Valerie now must go on some form of systemic drug therapy. We are headed to the University of Michigan to Dr. Mark Zalupski who is doing a CCC trial with a new drug called DAVANAT.
We don't understand why no one told us about the work of Dr. Kennedy at wake radiology. He is famous in the major cancer conferences. I just read a study from Italy where they had tremendous success with the radiembolization technique using a chemo drug in the microspheres against BDC.
Our suggestion is that as soon as you are diagnosed with cholangiocarcinoma you call Wake Radiology and send you records to Dr. Andrew Kennedy.
Then call washington University in St. Louis and ask for Dr. William Chapman.
Anyone out there on DAVANAT?
So here is the rest of the story.