1

(21 replies, posted in Introductions!)

I am so sorry to hear your news. My grilfriends brother is in Toronto this week to see if he can have a new team resect the tumour. One thing they said was if he were 20 years older (he is 41 right now) they would not even consider doing anything. This just sounds like an awful condition.

2

(21 replies, posted in Introductions!)

Oh yeah - Thank Raye! I sent your info on to my friend Tanya so she can reach out with you directly given the is leading the charge!.

3

(21 replies, posted in Introductions!)

I appreciate all of this. Part of the process, outside of learning the medical side of it, it to gain a realistic understanding of what we are dealing with and part of the strategy is to see if we can find a survivor. Part of that is to also define the word survivor (ie does that mean someone lived to a ripe old age, or someone who managed to survive for 10 years, 5 years, 3 years etc).

I appreciate the feedback and although it saddens me as it looks like my 41 year old friend won't be around to cause mayem in the "old age" home. Although disappointing it is "information" and might have an impact on what direction the family will take as right now they are running themselves ragged looking for an out and out cure (I cannot blame them). In all of this though they are seeking as many medical opinions as possible - although you would be amazed as to how difficult doctors can sometimes be about granting the referrals that are needed to get other opinions. That being said it is easy to fix by a slight increase in "intensity" - theyeventually acquiesce although it is disappointing that they make us expend this escess energy.

4

(21 replies, posted in Introductions!)

Thank you - I will look everywhere I can.

One strategy I had was to find a "survivor" and work backwards. Unfortunately there do not seem to be any. This is very discouraging but it is also important that we gain an understanding of "reality". I am so sorry for your loss, I lost my mom to breast cancer, so I know the pain it causes - it wouldbe nice if mygirlfriend could be spared this feeling.

5

(21 replies, posted in Introductions!)

Thank You Gavin. I too am sorry to hear about your Dad. If I can ask a direct question; what kind of results did you experience with PDT?

We are innundated with "options" some seeming credible and others seeming ridiculous and do not know how to Wade through (we have preliminary meetings with oncologists in 2 weeks and want to beable to ask questions about alternative treatments in an attempt to have the cart lead the horse - if you know what I mean)..

6

(21 replies, posted in Introductions!)

My friend is here in in Ottawa Canada and suffers from PSC (primary schlerosing colingitis).  He has always been otherwise very healthy, and the colitis and PSC were controlled well with medication up until last summer.   

His doctors in Ottawa, ON decided his first stent was required (to keep the bile duct open) in September of last year, just before his 41st birthday.  The ERCP resulted in a case of severe acute pancreatitis, and he spent nearly a week in ICU with respiratory and kidney failure.

Herecovered very well from this, and was released from hospital after about 6 weeks, with dialysis required for only about 2 weeks after.

Later towards December, the medical team began to look more closely at the reason for the blockage of the bile duct, and discovered a dominant stricture, suspecting that it might be a cholangiocarcinoma.  The suspect tissue is located low on the bile duct, close to the pancreas.

He had 3 biopsies over the last few months, with none resulting in a positive diagnosis - the most recent results came on March 29th - and the sample cells were determined to be "highly suspicious" for endocarcinoma.

A Whipple procedure was booked for last Friday April 16th.  We were warned of 2 possible complications:  1.  That there may be too much scarring from the pancreatitis to access the area, and more worrisome was 2.  That the "tumour" might be involved with a main blood vessel (i.e., portal vein).

Unfortunately we received the worst news possible on Friday.  The tumour was not resectable due to both of the concerns above.  And a biopsy taken from the lymph was positive for adenocarcinoma.

We are looking for an innovative, aggressive treatment that could overcome the difficulties the surgeon encountered during the procedure.

7

(21 replies, posted in Introductions!)

My Girlfriends brother has recently been diagnosed with an unresectable extrahepatic cholangiocarcinoma. We are swamped and do not know where to start. Our first thought would be to find a success story from someone who has survived and to work backwards to see what route they took.

Anyone?

Thanks.