Question about liver transplant
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Hi mimi9999…..I am so glad to hear from you and am thrilled to see that you are doing so well. BTW have you heard from Jamie? I am looking for her postings.
Best wishes for continued success,
MarionMy experience with seeking a liver transplant…
I consulted a transplant specialist in Dallas in July who was kind, but very clear that I am not a candidate. He added that he didn’t know of a transplant team in the country that would accept me. I have CC, large tumor located in both liver nodes, with enlarged lymph nodes in the area. His most startling comment was that if there is any chance of mets, the transplant would be bad because the anti-rejection drugs following a transplant act like a fertilizer on cancer cells. I have only his word for this, but I know him to be one of the most respected specialists in the state.
I am on chemo prescribed by M.D. Anderson as of early August. My second follow-up CT last week showed a bit of shrinkage as it did the first time. My tumor marker numbers have been cut in half, so I will continue the program indefinltely. Fortunately, I am tolerating the treatments well.
I had great hopes for the transplant as I waited for the appointment, but it was not to be. I’m grateful for MDA and the encouragement I have received there.
Perfect timing. I JUST received an email last night from DR. Myron Schwartz at Mt. Sinai in NYC. He was very helpful when I was researching resection vs. transplant for my mother this past summer. I emailed him again regarding my mother’s sucessful transplant at the Mayo. Here is part of his email response:
“We have decided to establish a transplant protocol here in NY, a collaboration between Memorial Sloan-Kettering and Mount Sinai wherein patients will receive the neoadjuvant treatment at Memorial, and the transplant (usually living donor) at Mount Sinai. “
I don’t know how soon this collaboration is starting, but if you are already at Sloane, it would not hurt to ask them about this joint venture. I was so happy to receive Dr. Schwartz’s news because this opens up options for CC transplants in the Northeast
Ashley
I asked the same question when my husband first was diagnosed. Why not a new liver? I received the following answer: The cancer is not only in the little spots on the liver but, it is also in the arteries and veins which are feeding in to the liver. A liver can be replaced but, the major vessels cannot. This cancer originates in the lining of the bile duct and then spreads to wherever it wants to go. In other words: it can be systemic. I do believe though, that you need to consult with several physicians before beginning a treatment. Radiation may be an option depending on where the tumors are located and how many are present. But, this is something you would want to discuss with a specialist in the field of cholangiocarcinoma.
Receiving the news is always a nightmare. I so much understand your fear and frustration in fact, everyone on this board does. But, we have to look to those people who successfully were able to halt progression of this disease. Your Mom may very well be one also.
Hugs coming your way,
MarionMy mom has a growth in the bile duct but when the doctors went in to do a ressection they saw what looked like sand sized spots on the top of the liver. The surgeon advised us that chemo is our only option at this point. I read other stories on this message board about people having 80% of their livers taken out, I dont understand why he couldnt do it. Is there something I could be missing?
For those of you who may have experience with the Mayo Clinic in Jacksonville, what has your experience been? Im not sure if my mom should come to FLorida or stay in New York and consult with Sloan Ketterin again.
This is a nightmare!
There is an ongoing liver transplant clinical trial at the University of Utah
This is the link: http://clinicaltrials.gov/ct2/show/NCT00708877In 1985 the Mayo Clinic established the protocol and standard for liver transplantion. http://www.mayoclinic.com/health/liver-transplant/MY00349
I don’t know in how much, if any, the protocol differs from the one offered at the University of Utah.
Several of our members or relatives of liver transplant patients may be able to share more information with you.
I like your question because, it may give all of us a chance to learn more
Best wishes,
MarionMy mother had what was called a Klatskin tumor prior to her transplant. I’m still confused myself on your question because when they staged her to see if it spread ( would disqualify her for transplant) they talked about testing lymph nodes and the peroneium (sp) or abdomen wall area so I am not sure about the actual liver itself. I also know the tumor must be under 3CM.
I am obviously not a doctor, but during my research on this I find that most people we have met or read about in this protocol either have a Klatskin tumor or cellular activity ( high CA 19-9) with no visible tumor. A klatskin tumor may not be considered ‘in’ the liver because it is actually in the bile duct where the two ducts bifurcate.
Sorry I can’t help you more on this. If you are not near one of the 3 Mayo sites, there are other hospitals doing the Mayo protocol. Barnes Jewish ( St. Louis), Chicago, U. of Nebraska, and Utah are a few that come to mind.
Best Wishes
AshleyIf the bile duct cancer has just spread to the liver (top of the liver), does that still allow aomeone to be a candidate for a liver transplant. I read such great success stories from Mayo but wasent sure about the process of actually getting one.
What is generally the criteria for a liver transplant?
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