Greetings all. New to the site. Diagnosed 6 months ago with advanced intra- and extra-hepatic tumor. CA 19-9 peaked at 18,000, bilirubin up over 7 and Alk-phos over 500. I have two plastic stents, which have been replaced twice. The GI doc stated that if metal stents were used I would have no chance for future resection.
Started chemo in October and struggled mightily. Uncontrollable nausea and hellish food aversions (including water) resulted in 45 lbs weight loss over about an 8 week period. I experienced and was hospitalized for renal (kidney) failure as a result of my dehydration. Chemo cycles were 2 weeks on, 1 off with Gemzar/Cisplatin. Chemo cycle was changed to 1 on, 1 off. Bilirubin numbers finally dropped below 3.0 and the Oncologist introduced Abraxane into the cycle with Gem/Cis. It was almost an immediate game-changer. Abraxane is not considered “standard of care” treatment for cholangiocarcinoma yet, but it seems to have dramatically improved my prognosis. As soon as my CA19-9 started to drop, my nausea and food aversions started to abate.
As of this week, CA19-9 is just under 3,000. bilirubin is at .3, I’ve gained back about 20 lbs of weight and I’ve been cleared as a surgical candidate (likely a Whipple procedure). Meeting with the surgeon tomorrow and with luck will have my last chemo treatment tomorrow as well.
For those undergoing chemo with Gem/Cis and have bilirubin <3, consider speaking with your oncologist about Abraxane. It has made a world of difference for me.
HVSB