(1 replies, posted in General Discussion)

Well, my dad's CA-19-9 cancer marker keeps going up.  It was 172, then 211, then 294, then 337, now 614.  He had an embolization done in March with no chemo due to an unusual anatomy and too dangerous.  Does this usually mean it is growing in the liver or spread elsewhere?   Also my dad's newest symptom is very dry mouth.  Has anyone ever experienced that with cc?  Thank you.

Well, the day we got his blood taken, he was feeling very out of it and and actually considered going to the emergency room with me.  But as we spent more time together, he said he started to feel better and in fact he grocery shopped and we ate lunch together.  So I knew it was a good idea to have his blood taken on a day when he felt awful, but since then he has been feeling pretty good.  So I am just confused as to why the ammonia may go up and down like it does.  I called his oncologist today but he didn't return my call.   It's been a challenge making sure these doc's get the blood work results and review them but I am all over them.  smile   I guess we will know more on Weds.  Just FYI, his bilirubin was 1.7 last week, no exorbitantly high, but over the limit.  But his CA 19-9 was 294, ammonia 180, and the AST and ALT were 367 and 228, so all very high.  It's just weird that one week prior his AST and ALT were 20 and 16.  Still trying to understand it all.  Thank you, Marion for your feedback.  Roe

Hi All - My Dad was diagnosed with CC on 12/15/09.  He had an embolization done on 3/1/10, they were not able to administer chemo during the embo due to apparently his rare anatomy.  On 3/10/10 his AST, ALT, CA19-9 and Ammonia levels were normal.  Then last week we had his blood tested again and all 4 were off the charts, including his bilirubin levels.  We will be having an MRI this Weds to see how well the embo did in terms of shrinking the tumor, etc., but I am curious what you all think this means that these levels are back up.  I want to arm ourselves with some knowledge before the appointment, obviously I don't think this is good.  Generally my dad is feeling fairly well, living independently, eating, and not constipated, but the blood work to me indicates a bad turn.  Any thoughts?  Thank you.  Rosanne


(4 replies, posted in Introductions!)

Hi, I just found this website and it looks like a Godsend for support and information.  My dad was diagnosed with cholangiocarcinoma in Dec. 2009 with metastases to the liver.  It was considered resectable technically, but due to his prior health conditions, they felt he would not handle the huge liver surgery.  So we opted for chemo-embolization.  After 2 failed attempts due to heart arrythmia's during the procedure, a third attempt was made.  Apparently he has a very unusual anatomy and they could not safely administer the chemo to the tumor, but only cut off the blood supply with a gel foam, done at Johns Hopkins in Baltimore, so thus only embolization was done, no chemo.
My question to all of you is what does this mean prognosis-wise.  The doctors at JHH are being very quiet about his prognosis and kind of want to see his MRI in a week or two to see if the tumor has shrunk.  However, his oncologist in town here yesterday told us quiet shockingly that he could have months or maybe only weeks left to live.  My Dad is living on his own, not feeling well, losing weight, but he is eating, walking around his apartment, and living independently so far, with lots and lots of visits and phone calls from his 4 daugthers.  We just don't understand what we have to expect with his apparent upcoming major decline.  I need to know what is going to happen.  I can handle it.  If any of you can help me, I would greatly appreciate your input.  Thank you and God Bless All of you!