octopus

I’ve just discovered this site, the discussion boards and the struggles and hope that are contained here. Here is my story as an introduction:

I am a 35 year-old man, and I was diagnosed with cholangiocarcinoma in early July, 2009. At that time, there was a 12cm, poorly-differentiated tumor in my liver and some involvement in the surrounding lymph nodes.

I am lucky to live in the Washington, D.C. area (at least with respect to this) and am being treated by the doctors at the National Institutes of Health’s National Cancer Institute. The surgeon there advocated for aggressive liver resection followed by chemotherapy. This was the opposite of what my other doctors had suggested. However, after much soul-searching, my family and I thought that the NIH route would be the best, so I signed up.

Unfortunately, I also have an intestinal disease called Crohn’s disease. I had two previous abdominal surgeries that left me with a lot of scarring on the inside. Also, there was some damage to my remaining, non-cancerous liver that was done by the Crohn’s drugs. Finally, when they got inside to do the surgery, it looked like there was some cancer in the distal bile duct near my pancreas. After all of that, the surgeons decided to sew me up without removing or resecting anything.

So, now I’m finishing up my first course of Gemcitabine and Cisplatin. I’m in the “one week off” part of the 21 day cycle. I seem to be tolerating that well, with only a bit of fatigue. The hope is that some combination of this treatment and chemoembolization will make surgery a better option. However, it looks like the surgery that could prolong my life is both a radical liver resection and a whipple procedure. To say the least, that is terrifying.

I look forward to continuing to read the information that is here. Thank you all for everything that is already done, and I look forward to contributing some tidbits of information so that others may be helped.