I was diagnosed with CC
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Craig,
Dr. Gores advised me against PDT also (I agree – a fantastic physican!). I made the argument to him that I wanted to try a targeted therapy since my mets seem to be under control and the radioembolization/theraspheres is what we came up with. I’ll keep you updated on how it goes.
Funny you ask about my gallbladder. It’s also distended quite a bit and my cystic duct is occluded. This is the cause of most of my pain and I’m taking some heavy duty pain meds because of it. I’m not sure about any cancer being there, but it is suspicious because of the blockage. I also have PSC liver disease which could potentially cause this also.
I also have the metallic stents in at the bifurcation. One into each main hepatic duct. They have done pretty well for me, but they became blocked with sludge a few months back and when I had an ERCP to correct it they placed plastic stents within the metal stents.
It seems that there are a lot of people lately that have gone through Mayo protocol and get disqualified at the staging surgery. What a bunch of work and sacrifice to go that far and then not get the cure.
Rick
Dr. Gores a very good man. I thought of Photodynamic therapy and we discussed it and I/we decided the not follow that procedure. Yours is something new to me. I do have two metal stents in the common bile duct. Let me know how it goes. What shape is you gall bladder in? Mine is distended and chucked full of CC cells and some sand from the bile.
Good to here.
CraigCraig,
It looks like we’re neighbors. I live near Muskegon. We have more in common as I went to Mayo in Rochester for workup for the transplant protocol and was declared ineligible at the time of the staging surgery – after going through all of the transplant workup, etc.
The one thing that I am doing at Mayo next week is a different type of brachytherapy called Theraspheres which is supposed to be very effective and I hope that it will do a lot of good in battling my primary tumor (my mets are in the peritoneum).
I have found that my local oncologist really doesn’t have a lot of experience or ambition in treating my CCA, but he is willing to follow the lead of my Dr’s at Mayo.
Welcome to the place that noone really wants to be. I hope that things go well for you moving forward. Maybe you could look into Theraspheres at Mayo as well? I assume that you met with Dr. Gores at Mayo – he is the one that is giving me the green light for this treatment.
Rick
Diagnosed
I was diagnosed with Cholangiocarcinoma stage 4 April 16th, 2009. I went from my local hospital in Grand Rapids, MI to the University of Michigan Cancer Center where the tumor board said I could not be resected and was directed to Mayo Clinic Rochester, MN for a liver transplant. When they did part of there workup in June they told me I was in very good shape just had the CC and scheduled for prep work for the liver transplant. That consisted of 30 radiation treatments, 21 days of 5FU, brachy high dose radiation therapy, and staging surgery. Mind you I had no metastatic cells in my body before the prep work for the liver transplant! When the surgeon came by after the staging surgery and said they found cells in the lymph tissue and that I was out of the program/process of a transplant. I was sent home – – – the oncologists have told me they do not know what or how to treat the CC tumor. I received chemo through the month of January 2010 and stopped because I was exhausted the majority of the time and could or would not do anything, there was no joy in life and no future. Depression, well that is to say to me, was nothing but suppressed ANGER. I was angry at G_d, VA for turning me down, at the world and anything else that got in my way.
I have use alternative products all the way through this mess and have had a better quality of life since. There are times I am down, temper is short, and I tire easily (exhausted). My last PET scan indicated that I had no metastatic cell, just the CC tumor.
I have great respect for Mayo Clinic and the liver transplant team and University of Michigan Cancer Center and their tumor board. I consider most of the doctors
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