Don't have the answer for Julie yet, but will stay on top of it. In regards to the patient registry, have you used the link?
We have been working on the Cholangiocarcinoma Global Patient Registry for more than one year - no kidding. Questions had to be compiled, corrected, forwarded for review, questions revised, physicians revised some of the revisions, back to revisions of revisions, IRB requested more revisions and so on. Yikes. Finally it is in the "final" IRB stage and we are awaiting the launch of the global patient registry. FINALLY. This registry is de-identified and will allow for any one person entering information to also read up on the information entered by others. This in turn will allow for a great overview of treatments as well as survival of each registrant.
As of now, more than 500 people have pre-registered. Quite impressive.
Duke....I have been in the dog house many times over for exactly what you are referring to, the definition of "survivor" and definition of "long term" survivor. The overall consensus is that the person diagnosed with this cancer is considered a survivor.
Bruce (2000miler) had compiled a list and provided a graph addressing diagnoses and survival, but it is not current:
http://www.cholangiocarcinoma.org/punbb … er_id=9357
If someone would take on the task of compiling all information (similar to what Bruce had done) and then breaking it down into categories: diagnoses, treatment, years of living with this cancer, etc. maybe then we could get a more accurate answer.
Patty started a thread: Survival ....please tell us your latest milestone:
http://www.cholangiocarcinoma.org/punbb … hp?id=8883
Perhaps we can revise this thread and see who will respond?
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