Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 My husband is on the list - his meld score is " 9 " and he had blood work done on Saturday and it is ALL within normal ranges. He is not doing well AT ALL and this disease is progressing really fast - it seems worse each day. I just do not understand how he can feel so bad and the CT and MRCP shows his liver, spleen and ducts are in really bad shape and yet his blood work gets more normal every day. I know it is not uncommon with this disease but I just don't " get it. " I guess it goes back to having to know " why " and there is no answer for that. For me it's more " how " than why. I know that " it is what it is " . His Ca 19-9 is very high: 5/20/08-1473; 12/18/06-1475; 12/4/06-1774 and his hep did a PET Scan that was normal. I've brough this up in this group before so I know not to take this test too seriously. also has chronic pancreatitis and has had a " Pisteau " surgical procedure and now has stones from the head to the tail of his pancreas. I guess I'm just really discouraged today. All I know for sure is that this sucks! Barbara Bickmore My husband had a CA 19-9 test this week and the numbers are high: 5/20/08 - 1473; 12/18/06 - 1475; 12/4/06 - 1774. > > Barbara (wife of (PSC 07, Panc surg 1/07, chronic panc, > gallbladder 7/06, HE, etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Barbara Bickmore:::::: I have a story to tell you. I had the same thing and I told the Doctor that that this had to end. I no qualiy of life. SOOOO they changed the meds that I was taken and I felt so much better in 2 days that I went out and played 18 holes of golf. Good luck that this might work for you:: Lee G in Seattle > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Barbara Bickmore:::::: I have a story to tell you. I had the same thing and I told the Doctor that that this had to end. I no qualiy of life. SOOOO they changed the meds that I was taken and I felt so much better in 2 days that I went out and played 18 holes of golf. Good luck that this might work for you:: Lee G in Seattle > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 If his CA19-9 is that high, and the scan doesn't show anything, then I would go as quickly as possible to the Mayo Clinic for evaluation for cholangiocarcinoma. Something isn't right and your husband's doctors seem to be at a loss for figuring this out. -Marie Marie To: From: babsbickmore@...Date: Mon, 16 Jun 2008 20:02:48 +0000Subject: I just don't get it My husband is on the list - his meld score is "9" and he had blood work done on Saturday and it is ALL within normal ranges. He is not doing well AT ALL and this disease is progressing really fast - it seems worse each day. I just do not understand how he can feel so bad and the CT and MRCP shows his liver, spleen and ducts are in really bad shape and yet his blood work gets more normal every day. I know it is not uncommon with this disease but I just don't "get it." I guess it goes back to having to know "why" and there is no answer for that. For me it's more "how" than why. I know that "it is what it is".His Ca 19-9 is very high: 5/20/08-1473; 12/18/06-1475; 12/4/06-1774 and his hep did a PET Scan that was normal. I've brough this up in this group before so I know not to take this test too seriously. also has chronic pancreatitis and has had a "Pisteau" surgical procedure and now has stones from the head to the tail of his pancreas. I guess I'm just really discouraged today. All I know for sure is that this sucks!Barbara BickmoreMy husband had a CA 19-9 test this week and the numbers are high: 5/20/08 - 1473; 12/18/06 - 1475; 12/4/06 - 1774.>> Barbara (wife of (PSC 07, Panc surg 1/07, chronic panc,> gallbladder 7/06, HE, etc.) Instantly invite friends from Facebook and other social networks to join you on Windows Live™ Messenger. Invite friends now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 If his CA19-9 is that high, and the scan doesn't show anything, then I would go as quickly as possible to the Mayo Clinic for evaluation for cholangiocarcinoma. Something isn't right and your husband's doctors seem to be at a loss for figuring this out. -Marie Marie To: From: babsbickmore@...Date: Mon, 16 Jun 2008 20:02:48 +0000Subject: I just don't get it My husband is on the list - his meld score is "9" and he had blood work done on Saturday and it is ALL within normal ranges. He is not doing well AT ALL and this disease is progressing really fast - it seems worse each day. I just do not understand how he can feel so bad and the CT and MRCP shows his liver, spleen and ducts are in really bad shape and yet his blood work gets more normal every day. I know it is not uncommon with this disease but I just don't "get it." I guess it goes back to having to know "why" and there is no answer for that. For me it's more "how" than why. I know that "it is what it is".His Ca 19-9 is very high: 5/20/08-1473; 12/18/06-1475; 12/4/06-1774 and his hep did a PET Scan that was normal. I've brough this up in this group before so I know not to take this test too seriously. also has chronic pancreatitis and has had a "Pisteau" surgical procedure and now has stones from the head to the tail of his pancreas. I guess I'm just really discouraged today. All I know for sure is that this sucks!Barbara BickmoreMy husband had a CA 19-9 test this week and the numbers are high: 5/20/08 - 1473; 12/18/06 - 1475; 12/4/06 - 1774.>> Barbara (wife of (PSC 07, Panc surg 1/07, chronic panc,> gallbladder 7/06, HE, etc.) Instantly invite friends from Facebook and other social networks to join you on Windows Live™ Messenger. Invite friends now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Marie Nilsson wrote: > If his CA19-9 is that high, and the scan doesn't show anything, then I > would go as quickly as possible to the Mayo Clinic for evaluation for > cholangiocarcinoma. Something isn't right and your husband's doctors > seem to be at a loss for figuring this out. I would second this. CA19-9 that high needs to be checked out thoroughly with doctors who really know this disease! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Marie Nilsson wrote: > If his CA19-9 is that high, and the scan doesn't show anything, then I > would go as quickly as possible to the Mayo Clinic for evaluation for > cholangiocarcinoma. Something isn't right and your husband's doctors > seem to be at a loss for figuring this out. I would second this. CA19-9 that high needs to be checked out thoroughly with doctors who really know this disease! athan Quote Link to comment Share on other sites More sharing options...
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