Hi All, I found your wonderful site to learn as much as I could to help my mom! She has been diagnosed in the last 3-4 weeks and as I read from many of you our confusion over this disease is shared by all of you. Her story, quickly. She went to see doctor after having some pain in her side and they found a tumor between her liver and pancreas (not attached or a part of either organ). She had no other symptoms, nothing shows in blood tests, all markers are within range but there is a the tumor, I believe a lymph no shows some signs and of course the cancerous cells in the bile ducts where they believe this all started. No blockage at all in bile ducts at this point. She is being treated at MD Anderson (Orlando) and now has a port. Supposed to start Chemo (not sure of cocktail), but is now being told she "may" qualify" for a trial. We were told the chemo was to kill off anywhere else cancer may have spread. Surgeon said he doesn't prefer operating unless it would cure and the location is "risky" to remove. I have been reading the forums and feel better prepared for next Dr. visit (2nd opinion with Mayo (Jax) next week, so already reaping benefits of all who are fighting this.
Some questions for you.....
1. I see very few mentions of using radiation in posts, is this not used often with cc?
2. Not that there is a "typical" but is it normal to attack the system with Chemo first and is there specific cocktails to attack the disease in bile ducts?
3. If she qualifies for the trial Dr. says it is her choice to move forward with it or start with the Chemo. We are just starting the fight and we do not know what questions to ask regarding cost/benefit of clinical trials. Can you suggest things we should ask to help the decision.
4. What makes someone "inoperable", location? Spread of the disease?, WHAT?
5. No mention of transplant by doctors so far, what conditions make someone NOT ELIGIBLE for tranplant.
Lastly, very upset specifically after reading so much about all of you. This past Monday mom asked the "how long do I have question". The doctor said 12 months! After all I have read I have spent all week trying to convince mom the doctor does not know!!!! It seems no two cases of cc are alike, atleast that I can tell. So few cases annually with no clear protocol, anything is possible. We are just beginning our fight, the fact he said this is already sending my emotions into a rage and willing to go with 2nd opinion whatever it ends up being next week! How do you know after 2, 3, 4 opinions which one to go with! We just want to start treatment whatever it is, gotta do something, feeling like everyday not doing something is a day lost.
Your thoughts are appreciated and GOD BLESS YOU ALL!!