Re: Unusual Cholangio Guy - Survivor Against the Odds

Lainy and Bob,

15 years?  That would seem to be rare.  I found out early that cc is so rare that good stats are hard come by and unreliable.  Some friends have chided me for trying to look at stats with "Just live your life!" and their point is well taken and intended, but still I like to know where I am as much as possible. 

Is it true that in general survival is under 50% for 3 years?  And it depends on so many factors, the T, R, N, where it was found, its size, how far from other structures, etc.? 

I think by the time someone is 7 or more years out, they will probably die of something other than cc, right?  "Remission" has become an increasingly fuzzy word in my mind, seeming to mean "We don't see it now" but "It could come back any moment." 

To what would you ascribe your long 15 years since diagnosis?  What did you do for how long and how did you feel?  How has the field of cc changed over your 15 years in it?

It's great to hear from a Major cc Veteran.  Anything you have to say is much appreciated here.

Best, Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Eli,
I followed your instructions and now have all my posts in Word over 34 pp.  Sometimes what others wrote to me are there, and this can be good as my posts often reply to what someone else wrote me, so it brings context to the string.  Now I have to reformat somewhat to take out the gray background and eliminate the headers or titles or whatever they are called.  From now on I should do the primary writing in Word and transfer over to the cc site. 

You are right about earthquakes and while LA might be famed for them, we are infamed for our unpreparedness.  When it hits, there will be terrible consequences of government sloth, personal laziness, ignorance, delusion, selfishness and more.  I am among those who fear social disorganization the most.  After a few days without flushing toilets, fresh water and electricity, many of LA’s heavily armed denizens will go berserk and run riot over the landscape.  I’ve lived through all of them so far and treated them like amusement park rides as I was young, in good shape, a trained acrobat and fun-seeker.  No one around me was injured or killed and things got back to normal quickly.  The Big One won’t be that way, and while I hope it occurs when I’m not here, I fear for my relatives and other good people who will fare poorly. 

Best, Jeff