Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Dear Don,Just wanted to let you know that you are not the only one with a Ca 19 over 300.My son is 26 and was diagnosed with UC/PSC in 04. Last month his Ca 19 came back 384 !! We are very concerned as it climbs every 6 months. So he has blood work andan MRI every 6 months. The MRI came back about the same so we are on wait and see , again.Lee mother of Bill 26 UC/PSC j pouchAll.....What a difference a day make! (and having , and Yes (for his humor) the Drukkster's!I listened to what said (call the nurse) she's great!...asked her the questions about which test I had ( it was the CA19-9 test) normals 0-to 37) but having your information took a LOT out of the bite...AND one good joke deserves another...see below...and all the rest of my fellow PSCer in the club that replied...thanks for your support!!...What a great club (that I don't want to belong to, but appreciate ever so much! And yes rule #1 is now a given!!!! It was a better day and I'LL away take someone with me when getting test results back! Don PSC /UC 11-08....! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Lee... Sorry to here this....but read this note from our own ,,,,it not always the "big C" in people with PSC....It could just be a obstruction of some sort!?! Hang inthere Prayers and peace to you and your Son! I'm doing a CT scan in a couple weeks...I let you know what they find! Don PSC/ UC 11-08 DON...Stay positive. The important word is "might". The blood test you are referring to is probably CA19-9. This tumor marker can be elevated in PSC patients due to blockages (stenoses) in the bile ducts:Z. Gastroenterol. 2005 Jun;43(6):587- 90. Impact of dominant stenoses on the serum level of the tumor marker CA19-9 in patients with primary sclerosing cholangitis.sen-Benz C, Stiehl AAbteilung für Gastroenterologie, Medizinische Klinik IV, Universitätskliniken Köln, Germany. .Benz@ web.deBACKGROUND/AIMS: Patients with primary sclerosing cholangitis (PSC) have an increased risk of developing hepatobiliary tumors. The tumor marker CA19-9 was claimed to indicate the occurrence of bile duct carcinoma. This study aimed to assess whether increased serum levels of CA19-9 in PSC patients with dominant stenoses indicate bile duct carcinoma. METHODS: The study cohort comprised 106 patients treated over a median time of 5.0 years (range 0.5 - 13 years). All patients were treated with ursodeoxycholic acid (UDCA) and whenever they developed dominant stenoses by endoscopic dilatation of these stenoses. In endoscopically treated patients, CA19-9 levels were measured before and 3, 6, 12 and 24 months after endoscopic dilatation. RESULTS: Of the 106 patients, 22 carcinoma-free patients and 3 patients with bile duct carcinoma had elevated CA19-9 levels. In 14 out of 25 patients with elevated CA19-9 levels, dominant stenoses were diagnosed and treated by endoscopic dilatation. In 71.4 % of the endoscopically treated patients, CA19-9 levels decreased following the endoscopic intervention. CONCLUSIONS: In PSC patients, increased serum levels of CA19-9 are rarely due to the development of bile duct carcinoma. In patients with dominant stenoses, the relief of biliary obstruction by endoscopic dilatation may lead to a decrease of the serum levels of CA19-9. PMID: 15986288.Yes, do have follow-up to look for bile-duct blockages, but don't assume cancer right now. Best regards,Dave (father of (23); PSC 07/03; UC 08/03) To: Sent: Saturday, February 21, 2009 4:40:51 AMSubject: Re: Don Ca 19 Dear Don, Just wanted to let you know that you are not the only one with a Ca 19 over 300. My son is 26 and was diagnosed with UC/PSC in 04. Last month his Ca 19 came back 384 !! We are very concerned as it climbs every 6 months. So he has blood work and an MRI every 6 months. The MRI came back about the same so we are on wait and see , again. Lee mother of Bill 26 UC/PSC j pouch All..... What a difference a day make! (and having , and Yes (for his humor) the Drukkster's! I listened to what said (call the nurse) she's great!...asked her the questions about which test I had ( it was the CA19-9 test) normals 0-to 37) but having your information took a LOT out of the bite...AND one good joke deserves another...see below...and all the rest of my fellow PSCer in the club that replied...thanks for your support!!... What a great club (that I don't want to belong to, but appreciate ever so much! And yes rule #1 is now a given!!!! It was a better day and I'LL away take someone with me when getting test results back! Don PSC /UC 11-08....! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Lee... Sorry to here this....but read this note from our own ,,,,it not always the "big C" in people with PSC....It could just be a obstruction of some sort!?! Hang inthere Prayers and peace to you and your Son! I'm doing a CT scan in a couple weeks...I let you know what they find! Don PSC/ UC 11-08 DON...Stay positive. The important word is "might". The blood test you are referring to is probably CA19-9. This tumor marker can be elevated in PSC patients due to blockages (stenoses) in the bile ducts:Z. Gastroenterol. 2005 Jun;43(6):587- 90. Impact of dominant stenoses on the serum level of the tumor marker CA19-9 in patients with primary sclerosing cholangitis.sen-Benz C, Stiehl AAbteilung für Gastroenterologie, Medizinische Klinik IV, Universitätskliniken Köln, Germany. .Benz@ web.deBACKGROUND/AIMS: Patients with primary sclerosing cholangitis (PSC) have an increased risk of developing hepatobiliary tumors. The tumor marker CA19-9 was claimed to indicate the occurrence of bile duct carcinoma. This study aimed to assess whether increased serum levels of CA19-9 in PSC patients with dominant stenoses indicate bile duct carcinoma. METHODS: The study cohort comprised 106 patients treated over a median time of 5.0 years (range 0.5 - 13 years). All patients were treated with ursodeoxycholic acid (UDCA) and whenever they developed dominant stenoses by endoscopic dilatation of these stenoses. In endoscopically treated patients, CA19-9 levels were measured before and 3, 6, 12 and 24 months after endoscopic dilatation. RESULTS: Of the 106 patients, 22 carcinoma-free patients and 3 patients with bile duct carcinoma had elevated CA19-9 levels. In 14 out of 25 patients with elevated CA19-9 levels, dominant stenoses were diagnosed and treated by endoscopic dilatation. In 71.4 % of the endoscopically treated patients, CA19-9 levels decreased following the endoscopic intervention. CONCLUSIONS: In PSC patients, increased serum levels of CA19-9 are rarely due to the development of bile duct carcinoma. In patients with dominant stenoses, the relief of biliary obstruction by endoscopic dilatation may lead to a decrease of the serum levels of CA19-9. PMID: 15986288.Yes, do have follow-up to look for bile-duct blockages, but don't assume cancer right now. Best regards,Dave (father of (23); PSC 07/03; UC 08/03) To: Sent: Saturday, February 21, 2009 4:40:51 AMSubject: Re: Don Ca 19 Dear Don, Just wanted to let you know that you are not the only one with a Ca 19 over 300. My son is 26 and was diagnosed with UC/PSC in 04. Last month his Ca 19 came back 384 !! We are very concerned as it climbs every 6 months. So he has blood work and an MRI every 6 months. The MRI came back about the same so we are on wait and see , again. Lee mother of Bill 26 UC/PSC j pouch All..... What a difference a day make! (and having , and Yes (for his humor) the Drukkster's! I listened to what said (call the nurse) she's great!...asked her the questions about which test I had ( it was the CA19-9 test) normals 0-to 37) but having your information took a LOT out of the bite...AND one good joke deserves another...see below...and all the rest of my fellow PSCer in the club that replied...thanks for your support!!... What a great club (that I don't want to belong to, but appreciate ever so much! And yes rule #1 is now a given!!!! It was a better day and I'LL away take someone with me when getting test results back! Don PSC /UC 11-08....! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Lee... Sorry to here this....but read this note from our own ,,,,it not always the "big C" in people with PSC....It could just be a obstruction of some sort!?! Hang inthere Prayers and peace to you and your Son! I'm doing a CT scan in a couple weeks...I let you know what they find! Don PSC/ UC 11-08 DON...Stay positive. The important word is "might". The blood test you are referring to is probably CA19-9. This tumor marker can be elevated in PSC patients due to blockages (stenoses) in the bile ducts:Z. Gastroenterol. 2005 Jun;43(6):587- 90. Impact of dominant stenoses on the serum level of the tumor marker CA19-9 in patients with primary sclerosing cholangitis.sen-Benz C, Stiehl AAbteilung für Gastroenterologie, Medizinische Klinik IV, Universitätskliniken Köln, Germany. .Benz@ web.deBACKGROUND/AIMS: Patients with primary sclerosing cholangitis (PSC) have an increased risk of developing hepatobiliary tumors. The tumor marker CA19-9 was claimed to indicate the occurrence of bile duct carcinoma. This study aimed to assess whether increased serum levels of CA19-9 in PSC patients with dominant stenoses indicate bile duct carcinoma. METHODS: The study cohort comprised 106 patients treated over a median time of 5.0 years (range 0.5 - 13 years). All patients were treated with ursodeoxycholic acid (UDCA) and whenever they developed dominant stenoses by endoscopic dilatation of these stenoses. In endoscopically treated patients, CA19-9 levels were measured before and 3, 6, 12 and 24 months after endoscopic dilatation. RESULTS: Of the 106 patients, 22 carcinoma-free patients and 3 patients with bile duct carcinoma had elevated CA19-9 levels. In 14 out of 25 patients with elevated CA19-9 levels, dominant stenoses were diagnosed and treated by endoscopic dilatation. In 71.4 % of the endoscopically treated patients, CA19-9 levels decreased following the endoscopic intervention. CONCLUSIONS: In PSC patients, increased serum levels of CA19-9 are rarely due to the development of bile duct carcinoma. In patients with dominant stenoses, the relief of biliary obstruction by endoscopic dilatation may lead to a decrease of the serum levels of CA19-9. PMID: 15986288.Yes, do have follow-up to look for bile-duct blockages, but don't assume cancer right now. Best regards,Dave (father of (23); PSC 07/03; UC 08/03) To: Sent: Saturday, February 21, 2009 4:40:51 AMSubject: Re: Don Ca 19 Dear Don, Just wanted to let you know that you are not the only one with a Ca 19 over 300. My son is 26 and was diagnosed with UC/PSC in 04. Last month his Ca 19 came back 384 !! We are very concerned as it climbs every 6 months. So he has blood work and an MRI every 6 months. The MRI came back about the same so we are on wait and see , again. Lee mother of Bill 26 UC/PSC j pouch All..... What a difference a day make! (and having , and Yes (for his humor) the Drukkster's! I listened to what said (call the nurse) she's great!...asked her the questions about which test I had ( it was the CA19-9 test) normals 0-to 37) but having your information took a LOT out of the bite...AND one good joke deserves another...see below...and all the rest of my fellow PSCer in the club that replied...thanks for your support!!... What a great club (that I don't want to belong to, but appreciate ever so much! And yes rule #1 is now a given!!!! It was a better day and I'LL away take someone with me when getting test results back! Don PSC /UC 11-08....! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2009 Report Share Posted February 22, 2009 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2009 Report Share Posted February 22, 2009 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2009 Report Share Posted February 22, 2009 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Hi Sandy, What is ridiculously scary? A few years ago there was someone on this forum who had 18.000 for CA 19-9. That is a value you need to be scared for. I had high CA 19-9 as well, after ERCP everything came back to normal. According to my hepatologist you should only start worrying about CA 19-9 when it gets over 500. Apart from that, CA 19-9 is not very reliable as a marker. Sometimes it is normal when there is cancer, and sometimes it is high when nothing is going on (apart from some blockage somewhere). Regards, Chaim From: [mailto: ] On Behalf Of Sandi Pearlman Sent: Monday, February 23, 2009 05:56 To: Subject: Re: Don Ca 19 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Hi Sandy, What is ridiculously scary? A few years ago there was someone on this forum who had 18.000 for CA 19-9. That is a value you need to be scared for. I had high CA 19-9 as well, after ERCP everything came back to normal. According to my hepatologist you should only start worrying about CA 19-9 when it gets over 500. Apart from that, CA 19-9 is not very reliable as a marker. Sometimes it is normal when there is cancer, and sometimes it is high when nothing is going on (apart from some blockage somewhere). Regards, Chaim From: [mailto: ] On Behalf Of Sandi Pearlman Sent: Monday, February 23, 2009 05:56 To: Subject: Re: Don Ca 19 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Hi Sandy, What is ridiculously scary? A few years ago there was someone on this forum who had 18.000 for CA 19-9. That is a value you need to be scared for. I had high CA 19-9 as well, after ERCP everything came back to normal. According to my hepatologist you should only start worrying about CA 19-9 when it gets over 500. Apart from that, CA 19-9 is not very reliable as a marker. Sometimes it is normal when there is cancer, and sometimes it is high when nothing is going on (apart from some blockage somewhere). Regards, Chaim From: [mailto: ] On Behalf Of Sandi Pearlman Sent: Monday, February 23, 2009 05:56 To: Subject: Re: Don Ca 19 Don, Hi! I'm in the high CA 19-9 club as well. I'm blanking on my numbers at the moment, but I do recall a doctor calling them ridiculously scary. (Nice, huh?) Hope today's a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 This is what my doc told me as well, he does not do them with routine labs. He likens it to a Sed rate, which can elevate from anything from active Crohn's to a bruise, it is a general marker. He said if the Ca 19-9 is elevated, then the other LFTs will be as well, so he doesn't do them routinely. If my numbers go up, then we will expand on the testing. He told me the Ca 19-9 often elevates for reasons other than cancer, and it causes a lot of confusion and anxiety. So knowing that, I would be be so quick to think cancer with an elevation either. However, I doubt my anxiety would be much lower!! It is scary either way, not knowing is very scary! ee > > Hi Sandy, > > > > What is ridiculously scary? A few years ago there was someone on this forum > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 This is what my doc told me as well, he does not do them with routine labs. He likens it to a Sed rate, which can elevate from anything from active Crohn's to a bruise, it is a general marker. He said if the Ca 19-9 is elevated, then the other LFTs will be as well, so he doesn't do them routinely. If my numbers go up, then we will expand on the testing. He told me the Ca 19-9 often elevates for reasons other than cancer, and it causes a lot of confusion and anxiety. So knowing that, I would be be so quick to think cancer with an elevation either. However, I doubt my anxiety would be much lower!! It is scary either way, not knowing is very scary! ee > > Hi Sandy, > > > > What is ridiculously scary? A few years ago there was someone on this forum > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 So, here's something to give everyone anxiety: 's CA19 was ZERO when he was diagnosed with the boogeyman cholangiocarcinoma. It's clearly not a great marker for screening out this problem. I so pray they get something better to screen for cancer for people who are high risk for CCA. Early detection is the only way to survive it. , wife of (psc 95, cca 2007, tx 2008, and now........ survivor of hepatic arterial aneurysm..... Oh! we are having so much fun with all this. I can't believe I had actually wondered how we were going to spend out our flexible spending account this year..... enter maniacal laughter.........) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 So, here's something to give everyone anxiety: 's CA19 was ZERO when he was diagnosed with the boogeyman cholangiocarcinoma. It's clearly not a great marker for screening out this problem. I so pray they get something better to screen for cancer for people who are high risk for CCA. Early detection is the only way to survive it. , wife of (psc 95, cca 2007, tx 2008, and now........ survivor of hepatic arterial aneurysm..... Oh! we are having so much fun with all this. I can't believe I had actually wondered how we were going to spend out our flexible spending account this year..... enter maniacal laughter.........) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 So, here's something to give everyone anxiety: 's CA19 was ZERO when he was diagnosed with the boogeyman cholangiocarcinoma. It's clearly not a great marker for screening out this problem. I so pray they get something better to screen for cancer for people who are high risk for CCA. Early detection is the only way to survive it. , wife of (psc 95, cca 2007, tx 2008, and now........ survivor of hepatic arterial aneurysm..... Oh! we are having so much fun with all this. I can't believe I had actually wondered how we were going to spend out our flexible spending account this year..... enter maniacal laughter.........) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Actually, that gives me the opposite of anxiety lol. I was previously worried about NOT having this test, now I see it would likely be more stressful than helpful. ee > > So, here's something to give everyone anxiety: 's CA19 was ZERO > when he was diagnosed with the boogeyman cholangiocarcinoma. It's > clearly not a great marker for screening out this problem. I so pray > they get something better to screen for cancer for people who are high > risk for CCA. Early detection is the only way to survive it. > > , wife of (psc 95, cca 2007, tx 2008, and now........ > survivor of hepatic arterial aneurysm..... Oh! we are having so much > fun with all this. I can't believe I had actually wondered how we were > going to spend out our flexible spending account this year..... enter > maniacal laughter.........) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Actually, that gives me the opposite of anxiety lol. I was previously worried about NOT having this test, now I see it would likely be more stressful than helpful. ee > > So, here's something to give everyone anxiety: 's CA19 was ZERO > when he was diagnosed with the boogeyman cholangiocarcinoma. It's > clearly not a great marker for screening out this problem. I so pray > they get something better to screen for cancer for people who are high > risk for CCA. Early detection is the only way to survive it. > > , wife of (psc 95, cca 2007, tx 2008, and now........ > survivor of hepatic arterial aneurysm..... Oh! we are having so much > fun with all this. I can't believe I had actually wondered how we were > going to spend out our flexible spending account this year..... enter > maniacal laughter.........) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Actually, that gives me the opposite of anxiety lol. I was previously worried about NOT having this test, now I see it would likely be more stressful than helpful. ee > > So, here's something to give everyone anxiety: 's CA19 was ZERO > when he was diagnosed with the boogeyman cholangiocarcinoma. It's > clearly not a great marker for screening out this problem. I so pray > they get something better to screen for cancer for people who are high > risk for CCA. Early detection is the only way to survive it. > > , wife of (psc 95, cca 2007, tx 2008, and now........ > survivor of hepatic arterial aneurysm..... Oh! we are having so much > fun with all this. I can't believe I had actually wondered how we were > going to spend out our flexible spending account this year..... enter > maniacal laughter.........) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 , I've been pretty sick lately and I didn't really pay attention to the posts like I wanted to. Do you mind telling me more about how all this was discovered? Also, I went down to SLC and saw Dr. Batista at the Mountain West Gastroenterology. I did not like this dr at all. He has referred me to the Mountain West Gastro Transplant Center where I will be evaluated by the team. Is this where went? or did he go to the University of Utah Transplant center? Hope to hear from you soon. I'm very unsettled right now because this Dr. Batista told me I never had Ulcerative Colitis, that I don't have ascities, that all my pain (including URQ) is due to the fact that I have Chronic Pain Syndrome. He was so full of misinformation that my head is still spinning. I haven't discussed this with my PCP. I did have a good visit with the Rheumatologist over my other problems and they are about ready to diagnose. Since it's been years with the problems, I will have that relief. Take care, Cheryl ID Re: Don Ca 19 > So, here's something to give everyone anxiety: 's CA19 was ZERO > when he was diagnosed with the boogeyman cholangiocarcinoma. It's > clearly not a great marker for screening out this problem. I so pray > they get something better to screen for cancer for people who are high > risk for CCA. Early detection is the only way to survive it. > > , wife of (psc 95, cca 2007, tx 2008, and now........ > survivor of hepatic arterial aneurysm..... Oh! we are having so much > fun with all this. I can't believe I had actually wondered how we were > going to spend out our flexible spending account this year..... enter > maniacal laughter.........) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Cheryl, I would run from that dr. Yikes! You need a hepatologist. Our hepatologist is Hutson at the University of Utah. EXCELLENT Care!!!! Also, Dr Cessman, another hepatologist..... the best care. The transplant team is tightly woven, highly organized, and without individual ego. Sooooo refreshing. has thrown at them nothing but the most puzzling problems, and they have worked hard to advocate on our behalf. We owe them 's life many times over, now. I hope you can get in to them. I haven't been paying attention, either, and only opened this post because it had the CA 19 heading. Are you needing to get in right away? If you are sick and can't wait the month or so, you might consider going in through the emergency room. God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Cheryl, I would run from that dr. Yikes! You need a hepatologist. Our hepatologist is Hutson at the University of Utah. EXCELLENT Care!!!! Also, Dr Cessman, another hepatologist..... the best care. The transplant team is tightly woven, highly organized, and without individual ego. Sooooo refreshing. has thrown at them nothing but the most puzzling problems, and they have worked hard to advocate on our behalf. We owe them 's life many times over, now. I hope you can get in to them. I haven't been paying attention, either, and only opened this post because it had the CA 19 heading. Are you needing to get in right away? If you are sick and can't wait the month or so, you might consider going in through the emergency room. God Bless, Quote Link to comment Share on other sites More sharing options...
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