Father has cholangiocarcinoma and trying to help
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PISEES, Yikes! Lots of situations going on here and I think they need to be whittled down. I like that Father’s ONC is talking to another Specialist. Don’t like that she is not telling your Father whole story. He has a right to know so that he can be informed thereby making good decisions. Since he is also seeking his own information I would think he is mentally strong enough for what ever she has to say. You would know that better than me, I am just saying. I would definitely push for a 2nd and/or 3rd opinion. Perhaps you could tell your Father about our website and that you have become an active participant and what is being told to you, or better yet let him read it if you feel he can accept it without getting too upset. I swear that once you are comfortable with a decision and treatment plan your fright will become fight. It’s just that you feel so up in the air right now. Wishing you all the best. Please keep us posted.
@PCL1029, his oncologist is planning for a PET scan in about a month, after a round or two of treatment with Gem/Oxaliplatin. We certainly are hoping for an improvement. The doctors have not said whether extrahepatic or not. The terms I have heard are adenocarcinoma and cholangiocarcinoma. They originally thought it was pancreatic cancer.
Are the CA19-19 less reliable indicator is extrahepatic?
@Lainy, my father is 69 and has stage 4 cholangiocarcinoma (metastasized to liver, lungs). Part of my concern is that oncologist is quite delicate in her approach to explaining the disease. At the last appointment I attended with my father, she expressed concern that CA19-9 has risen to 27,000 but did not go in to detail that I saw in operative report from a recent attempted ERCP because there was significant tumor involvement in the duodenal bulb encasing bilary stentHi Kurt,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your dad. Have your dads doctors talked about trying any other chemo’s apart from the Gem/Cis combination? Have the doctors also talked about what other treatments may be an option for your dad? Also, apart from the CC, how is your dads health in general? If you could give us some more information that would be great, and please keep us updated on how your dad is doing and what his doctors say.
My best wishes to you and your dad,
Gavin
Dear Pisees, may I ask how old your father is? Sometimes the elderly feel they just don’t want to go through all that unless they have a guarantee at the end. We all know you can’t guarantee results so they may feel then that at a certain age they just want to be alone. If your father is still younger perhaps the doctor could have a chat with him.
Hi,
May I suggest to wait until the next CAT Scan or MRI result before deciding the next step of treatment or additional options;even though when CA19-9 >600 is indicative of association with non-resectable CC.
BTW,intrahepatic CC is quite different from extrahepatic CC in terms of the tumor markers value ,treatment plans and prognosis. I suspect your father’s is extrahepatic or ductal in nature.
I hope the info. helps.
God bless.My father started with Gemzar and Cisplatin and did well initially with CA-19 getting down to 450. But since Sep. 2010 has been increasing and the latest results show CA-19 at 27,000. He has not shown interest in any clinical trials or alternative therapies. Have others experienced this? I don’t know whether to try and coax him to look at additinal options. Sometimes I wonder if he realizes how serious his condition is now.
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