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One and All:  This is exactly the kind of passion I am looking for, but first some clarifications. 

The research I am speaking of is not on tumor samples post surgery and such but on actual tumors grown in the lab. The great aspect of this approach is that different drugs, combat ions, and strengths can be evaluated in the lab in a near "live" situation.  Such an approach can get at the fundamentals much more quickly, and on a personal level, than can be achieved thru long term studies. In the case discussed in the article, the patient, and believe or not one of the researchers, each had a condition that causes recurring tumors with no known or proven treatment method, sans surgery. Success for the individual was achieved by growing the tumor in the lab and hen trying known, different, and new drug theraphies. In the end, a new and different drug was determined to be the best.

I plan to write both the researchers and the oncologist I saw at Mayo, Rochester, MN, to see if I can get them to use the tumors from my lungs tat I exect to ave removed in December as a starting point.

Thanks for he comments back and I will keep you nformed.

Ken

I am 53 with diagnosis and surgery at 52 for a very large intrahepatic mass in the right lobe.  The tumor find was totally serendipitous as I had no symtoms at all but had the CT scan for a totally different reason.  Removed the tumor and did not have any chemo or rad post surgery.  At the time of surgery, no indications of any other tumors. At 6 months, CT scan id'd small, 5 mm, nodule in lower lobe of left lung.  Followup CT scan at 8 months indicated that the nodule had grown to 8 mm.  Wedge resection surgery removed the nodule and confirmed same cancer as intrahepatic cholangiocarinoma previously removed from liver with right lobectomy.  Just complete two post lung surgery CTs, at 3 and 6 months post ung surgery, and both were completely clean. Planning to have another CT in 3 months and then move to 6 month CTs.

My thanks to each of you for your possible thoughts and reminding me of who is truly in charge. 

Ken

Margaret and Marion

Its great to know that there are others with knowledge and experience to talk with as my wife and I traverse this challenge.

Margaret, my prayers and thoughts are with you and Tom.  I pray that you and Tom have many, many great days together.

Marion, can you give me a perspective on those hospitals or medical groups that have the most experience treating intra hepatic  CC.  I read a lot of recent research regarding the chemo therapy and some more recent info regarding means by which to make it more effective. 

My next exam is December 1 and I want to be prepared to make good decisions.

Ken

Thank you both for the replies and the welcome. I appreciate the comments about the "chronic"desease and the second opinions.  I guess that is somewhat here I am at the current time.

I was quite disheartened to read all of the literature and the relative bleak picture it often painted. I am not ready to just call it quits. I am also very interested to hear of the second and third resections as possible options should the cancer recur. This was not something that my surgeon seemed to be very positive on.  Also, it is interesting to hear of the chemo and radiation adjuvant treatments, especially all that I have read with regard to the apparent non-sensitivity if the cancer to these approaches. Then again, I just read a very interesting article regarding potential changes in the manner of approaching chemo so as to increase the sensitivity of the cancer to the chemicals and to preclude the cells from turning in on themselves as a means to preclude being impacted by the chemo.

I am trying to discern if getting another review and assessment from say Mayo would be the right thing to do or if waiting on my next CT and then going forward would be best.  In either case it is very good to hear others positive ongoing efforts and results.

Thanks

Ken