Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Thanks for getting back to me Marie.When Bill talks to his Dr. , I will have him ask about an ERCP.LeeLee,I don't have any bleeding from my j-pouch.From what I've been reading about CA-19-9, it's a very unreliable test. However with a CA19-9 of 143 I think you should have your son get an ERCP or Endoscopic ultrasound to check for cholangiocarcinoma. I sincerely hope it is not that, but that's what I would push for (or even demand in a nice way). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Lee, I had a few high (127 and 153) CA19-9 test results. They came down immediately after an ERCP with balloon dilatation was performed. I am not telling you not to worry, don't worry too much though. One person on this forum that came down with CCA had CA19-9 results of 18.000 (I am sorry I don't remember who it was). Regards, Chaim From: [mailto: ] On Behalf Of Marie Nilsson Sent: Sunday, October 28, 2007 04:20 To: Subject: RE: CA 19 Lee, I don't have any bleeding from my j-pouch. From what I've been reading about CA-19-9, it's a very unreliable test. However with a CA19-9 of 143 I think you should have your son get an ERCP or Endoscopic ultrasound to check for cholangiocarcinoma. I sincerely hope it is not that, but that's what I would push for (or even demand in a nice way). Marie To: From: leedeubert (AT) gmail (DOT) com Date: Sat, 27 Oct 2007 10:01:31 -0400 Subject: CA 19 Hi all, I'm just looking at my son's labs and his CA19 has gone from 102 in June to 143 in Oct. [ high is over 37] Thoughts? When should we start getting concerned about this? His GGT is also on the rise....95 in June to 134 in Oct. His Dr. hasn't said anything, should we be asking? Also Bill is still slightly anemic and has some bleeding from his pouch but not all the time. This was news to me and something I was not happy to hear. Something he wasn't sharing with us all this time since his surgery. Question for the J -pouches out there, do you still have some bleeding? Thanks, always something Lee Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Thanks for the reply Chaim.I much refer being the helper rather than the one who needs help.But what a great group is here when you need them.LeeLee, I had a few high (127 and 153) CA19-9 test results. They came down immediately after an ERCP with balloon dilatation was performed. I am not telling you not to worry, don't worry too much though. One person on this forum that came down with CCA had CA19-9 results of 18.000 (I am sorry I don't remember who it was). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Lee, You are welcome. I hope it is " only " a problem of clogged bile ducts like it was with me. Chaim. From: [mailto: ] On Behalf Of leedeubert Sent: Sunday, October 28, 2007 14:47 To: Subject: Re: CA 19 Thanks for the reply Chaim. I much refer being the helper rather than the one who needs help. But what a great group is here when you need them. Lee Lee, I had a few high (127 and 153) CA19-9 test results. They came down immediately after an ERCP with balloon dilatation was performed. I am not telling you not to worry, don't worry too much though. One person on this forum that came down with CCA had CA19-9 results of 18.000 (I am sorry I don't remember who it was). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 That was my husband that had the 18000. His initial CA 19-9 was 8000 until they got the drains in him, then it dropped to below 4000 and then went back up when we were in the process of live donor testing. With all the brushings that they had done they were never able to locate CCA but with those numbers it was a given there was cancer. That eliminated him from transplant at the University of Pennsylvania but he was referred to Dr Gores at Mayo. Unfortunately, adenocarcinoma was discovered when the fluid was drained from his abdomen and that eliminated him totally from transplant consideration. Certainly the increase in CA19-9 is a concern to be addressed and may only indicate a slight blockage that with dilation will cause the numbers to go back down. Good Luck. Hettinger __________________________________________________Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 ,Thanks so much for the reply. It is so great of you to keep up with our group and to still be willing to help us.My son will be questioning his Dr.Together in the fight , whatever it takes.LeeCertainly the increase in CA19-9 is a concern to be addressed and may only indicate a slight blockage that with dilation will cause the numbers to go back down. Good Luck. Hettinger_________ Quote Link to comment Share on other sites More sharing options...
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