Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Cholangiocarcinoma is the ticking time bomb that we all worry about. After it is diagnosed most people are dead in 6 months. If it is caught very early and you can qualify for the Mayo Clinic transplant/chemotherapy plan then I read somewhere that there is an 80% 5 year survival. Early detection is very difficult and ERCP screening programs at this point would probably hurt more people then it would help. The question of transplant with MELD less than 15 is different for PSC patients compared to hepatis and alcoholic liver disease because of the cholangiocarcinoma risk. If you had hepatitis or alcoholic liver disease and a MELD less than 15 you would face the operative mortality with the 10-20% of death in the first year and it may not be worth it. In PSC if you take the transplant risk you get out from under the threat of cholangiocarcinma. The risk might be 1% per year. So if you transplanted at a MELD under 15 instead of waiting another 5 years till the MELD might be 20 then you avoided a 5% risk of cholangiocarcinoma. Not to mention that you can get on with your life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Cholangiocarcinoma is the ticking time bomb that we all worry about. After it is diagnosed most people are dead in 6 months. If it is caught very early and you can qualify for the Mayo Clinic transplant/chemotherapy plan then I read somewhere that there is an 80% 5 year survival. Early detection is very difficult and ERCP screening programs at this point would probably hurt more people then it would help. The question of transplant with MELD less than 15 is different for PSC patients compared to hepatis and alcoholic liver disease because of the cholangiocarcinoma risk. If you had hepatitis or alcoholic liver disease and a MELD less than 15 you would face the operative mortality with the 10-20% of death in the first year and it may not be worth it. In PSC if you take the transplant risk you get out from under the threat of cholangiocarcinma. The risk might be 1% per year. So if you transplanted at a MELD under 15 instead of waiting another 5 years till the MELD might be 20 then you avoided a 5% risk of cholangiocarcinoma. Not to mention that you can get on with your life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Hubby is now having an ERCP on Monday > afternoon. > Hi prichsy Best wishes for tomorrow, I am sure all will go well, I will be thinking of you 'acros the ditch'. Best wishes from Dipton, NZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Thanks . > Best wishes for tomorrow, I am sure all will go well, I will be > thinking of you 'acros the ditch'. > Best wishes from Dipton, NZ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Thanks . > Best wishes for tomorrow, I am sure all will go well, I will be > thinking of you 'acros the ditch'. > Best wishes from Dipton, NZ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Thanks . > Best wishes for tomorrow, I am sure all will go well, I will be > thinking of you 'acros the ditch'. > Best wishes from Dipton, NZ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Prichsy, Good luck to you and your husband. I hope ERCP makes his symptoms abate. I'm having one Friday. I was told that CCA is more likely in advanced PSC. There is a considerable debate over early vs later transplant and the various risks one takes on with either choice. While the prognosis isn't good once it is diagnosed, it does probably grow slowly for some months to years before diagnosis. There is active research on earlier signs to detect it before it's too late. Regular MRI, CT, ERCP for brushings, and CA19-9 levels are all ways to monitor CCA, with a positive for any one of these an alert to follow up. In the US there is an experimental protocol at the Mayo clinic for radiation/chemo followed by transplant for early stage CCA. Several members have done this or are currently being evaluated. Their results for cancers detected early are pretty good, with survival times not too far below those for transplants without CCA. BTW, my brother lives in Blenheim NZ on the South Island. He sends us good wine (and we were raised in California). He and his family love it in their adopted country. Someday we will make it down to visit. Martha (MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Prichsy, Good luck to you and your husband. I hope ERCP makes his symptoms abate. I'm having one Friday. I was told that CCA is more likely in advanced PSC. There is a considerable debate over early vs later transplant and the various risks one takes on with either choice. While the prognosis isn't good once it is diagnosed, it does probably grow slowly for some months to years before diagnosis. There is active research on earlier signs to detect it before it's too late. Regular MRI, CT, ERCP for brushings, and CA19-9 levels are all ways to monitor CCA, with a positive for any one of these an alert to follow up. In the US there is an experimental protocol at the Mayo clinic for radiation/chemo followed by transplant for early stage CCA. Several members have done this or are currently being evaluated. Their results for cancers detected early are pretty good, with survival times not too far below those for transplants without CCA. BTW, my brother lives in Blenheim NZ on the South Island. He sends us good wine (and we were raised in California). He and his family love it in their adopted country. Someday we will make it down to visit. Martha (MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Prichsy, Good luck to you and your husband. I hope ERCP makes his symptoms abate. I'm having one Friday. I was told that CCA is more likely in advanced PSC. There is a considerable debate over early vs later transplant and the various risks one takes on with either choice. While the prognosis isn't good once it is diagnosed, it does probably grow slowly for some months to years before diagnosis. There is active research on earlier signs to detect it before it's too late. Regular MRI, CT, ERCP for brushings, and CA19-9 levels are all ways to monitor CCA, with a positive for any one of these an alert to follow up. In the US there is an experimental protocol at the Mayo clinic for radiation/chemo followed by transplant for early stage CCA. Several members have done this or are currently being evaluated. Their results for cancers detected early are pretty good, with survival times not too far below those for transplants without CCA. BTW, my brother lives in Blenheim NZ on the South Island. He sends us good wine (and we were raised in California). He and his family love it in their adopted country. Someday we will make it down to visit. Martha (MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Detecting and treating cholangiocarcinoma (CCA) is difficult and presents great risk, but a study reported by earlier this month (msg 88692) gives hope that CCA can be prevented or the risk of CCA reduced to very low levels. No one in the study developed CCA after being on Urso for 8.5 years up to the 18 year duration of the study. The CCA rate for those in the first 2.5 years of the study was 0.58% per year, for the next 6 years it dropped to 0.49%. Beyond that, they don't speculate due to the zero incidence of CCA, but from the numbers enrolled in the study I would estimate it is below 0.40% and perhaps as low as 0.10%. A larger long term study would be needed to establish those figures. Tim R The incidence of cholangiocarcinoma in primary sclerosing cholangitis during longtime treatment with ursodeoxycholic acid. A. Stiehl Department of Medicine, University of Heidelberg, Germany Introduction: Cholangiocarcinoma (CCA) represents a serious complication of primary sclerosing cholangitis (PSC). In two recent studies with 604 and 161 patients followed over a median time of 5.7 and 11.5 years the reported incidence rate of CCA was 13.3 and 6.8 % (A Bergquist et al., J Hepatol 2002; 36: 321–327; K Burak et al., Am J Hepatol 2004; 99: 523–526). Ursodeoxycholic acid (UDCA) possibly may influnce the incidence of CCA in man (B Brandsaeter et al. J Hepatol 2004; 40: 815–822). Aim of study: The aim of the present study was to evaluate the incidence rate of CCA in PSC patients after longtime treatment with ursodeoxycholic acid. Patients and methods: The present study was started in May 1987 and data up to May 2005 were considered in the evaluation. A total of 150 patients (105 men and 45 women) with PSC but without evidence of CCA at entry were included in the study. Of the patients included 101 had inflammatory bowel disease (93 ulcerative colitis and 6 Crohn's disease). Altogether 120 patients were treated for 1 year, 107 for 2 years, 97 for 3 years, 83 for 4 years, 72 for 5 years, 62 for 6 years and 57 for 7–18 years. Up to 1995 the patients were treated with UDCA in a dose of 750 mg/d (8.8–15.3 mg/kg), starting from 1997 with 13.8–17.4 mg/kg and starting from 2001 with 18–20 mg/kg. A minority of 63 patients who were included in a study of UDCA absorption intermittently received higher doses of up to 30 mg/kg for up to 3 months. All 72 patients with dominant stenoses were treated by repeated endoscopic dilatation. Diagnosis of CCA was established in each case by histologic examination of tissue obtained at laparotomy or in the explanted liver at the time of liver transplantation. Results: The median treatment time of the 150 patients was 6.4 years. Altogether 5 patients developed a CCA during UDCA treatment yielding an incidence rate of 3.3%. The calculation of CCA per patient years revealed 0.58 CCA per 100 patient years in years 0– 2.5, 0.49 CCA in years 2.5–8.5, and no CCA thereafter up to 18 years after entry into the study. The Kaplan Meier estimate of CCA incidence during UDCA treatment reached a plateau after 8.3 years. All 5 patients with CCA belonged to the subgroup of patients with colitis and in addition to the subgroup of patients with dominant stenosis. Summary and conclusion: The annual incidence rate of CCA in PSC treated with UDCA is low and decreases with time of treatment. Compared with the CCA incidence rates reported in studies on the natural course of the disease, the CCA incidence after UDCA treatment was lower than expected. > > Cholangiocarcinoma is the ticking time bomb that we all worry about. > ... . The risk might be 1% per year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Detecting and treating cholangiocarcinoma (CCA) is difficult and presents great risk, but a study reported by earlier this month (msg 88692) gives hope that CCA can be prevented or the risk of CCA reduced to very low levels. No one in the study developed CCA after being on Urso for 8.5 years up to the 18 year duration of the study. The CCA rate for those in the first 2.5 years of the study was 0.58% per year, for the next 6 years it dropped to 0.49%. Beyond that, they don't speculate due to the zero incidence of CCA, but from the numbers enrolled in the study I would estimate it is below 0.40% and perhaps as low as 0.10%. A larger long term study would be needed to establish those figures. Tim R The incidence of cholangiocarcinoma in primary sclerosing cholangitis during longtime treatment with ursodeoxycholic acid. A. Stiehl Department of Medicine, University of Heidelberg, Germany Introduction: Cholangiocarcinoma (CCA) represents a serious complication of primary sclerosing cholangitis (PSC). In two recent studies with 604 and 161 patients followed over a median time of 5.7 and 11.5 years the reported incidence rate of CCA was 13.3 and 6.8 % (A Bergquist et al., J Hepatol 2002; 36: 321–327; K Burak et al., Am J Hepatol 2004; 99: 523–526). Ursodeoxycholic acid (UDCA) possibly may influnce the incidence of CCA in man (B Brandsaeter et al. J Hepatol 2004; 40: 815–822). Aim of study: The aim of the present study was to evaluate the incidence rate of CCA in PSC patients after longtime treatment with ursodeoxycholic acid. Patients and methods: The present study was started in May 1987 and data up to May 2005 were considered in the evaluation. A total of 150 patients (105 men and 45 women) with PSC but without evidence of CCA at entry were included in the study. Of the patients included 101 had inflammatory bowel disease (93 ulcerative colitis and 6 Crohn's disease). Altogether 120 patients were treated for 1 year, 107 for 2 years, 97 for 3 years, 83 for 4 years, 72 for 5 years, 62 for 6 years and 57 for 7–18 years. Up to 1995 the patients were treated with UDCA in a dose of 750 mg/d (8.8–15.3 mg/kg), starting from 1997 with 13.8–17.4 mg/kg and starting from 2001 with 18–20 mg/kg. A minority of 63 patients who were included in a study of UDCA absorption intermittently received higher doses of up to 30 mg/kg for up to 3 months. All 72 patients with dominant stenoses were treated by repeated endoscopic dilatation. Diagnosis of CCA was established in each case by histologic examination of tissue obtained at laparotomy or in the explanted liver at the time of liver transplantation. Results: The median treatment time of the 150 patients was 6.4 years. Altogether 5 patients developed a CCA during UDCA treatment yielding an incidence rate of 3.3%. The calculation of CCA per patient years revealed 0.58 CCA per 100 patient years in years 0– 2.5, 0.49 CCA in years 2.5–8.5, and no CCA thereafter up to 18 years after entry into the study. The Kaplan Meier estimate of CCA incidence during UDCA treatment reached a plateau after 8.3 years. All 5 patients with CCA belonged to the subgroup of patients with colitis and in addition to the subgroup of patients with dominant stenosis. Summary and conclusion: The annual incidence rate of CCA in PSC treated with UDCA is low and decreases with time of treatment. Compared with the CCA incidence rates reported in studies on the natural course of the disease, the CCA incidence after UDCA treatment was lower than expected. > > Cholangiocarcinoma is the ticking time bomb that we all worry about. > ... . The risk might be 1% per year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Detecting and treating cholangiocarcinoma (CCA) is difficult and presents great risk, but a study reported by earlier this month (msg 88692) gives hope that CCA can be prevented or the risk of CCA reduced to very low levels. No one in the study developed CCA after being on Urso for 8.5 years up to the 18 year duration of the study. The CCA rate for those in the first 2.5 years of the study was 0.58% per year, for the next 6 years it dropped to 0.49%. Beyond that, they don't speculate due to the zero incidence of CCA, but from the numbers enrolled in the study I would estimate it is below 0.40% and perhaps as low as 0.10%. A larger long term study would be needed to establish those figures. Tim R The incidence of cholangiocarcinoma in primary sclerosing cholangitis during longtime treatment with ursodeoxycholic acid. A. Stiehl Department of Medicine, University of Heidelberg, Germany Introduction: Cholangiocarcinoma (CCA) represents a serious complication of primary sclerosing cholangitis (PSC). In two recent studies with 604 and 161 patients followed over a median time of 5.7 and 11.5 years the reported incidence rate of CCA was 13.3 and 6.8 % (A Bergquist et al., J Hepatol 2002; 36: 321–327; K Burak et al., Am J Hepatol 2004; 99: 523–526). Ursodeoxycholic acid (UDCA) possibly may influnce the incidence of CCA in man (B Brandsaeter et al. J Hepatol 2004; 40: 815–822). Aim of study: The aim of the present study was to evaluate the incidence rate of CCA in PSC patients after longtime treatment with ursodeoxycholic acid. Patients and methods: The present study was started in May 1987 and data up to May 2005 were considered in the evaluation. A total of 150 patients (105 men and 45 women) with PSC but without evidence of CCA at entry were included in the study. Of the patients included 101 had inflammatory bowel disease (93 ulcerative colitis and 6 Crohn's disease). Altogether 120 patients were treated for 1 year, 107 for 2 years, 97 for 3 years, 83 for 4 years, 72 for 5 years, 62 for 6 years and 57 for 7–18 years. Up to 1995 the patients were treated with UDCA in a dose of 750 mg/d (8.8–15.3 mg/kg), starting from 1997 with 13.8–17.4 mg/kg and starting from 2001 with 18–20 mg/kg. A minority of 63 patients who were included in a study of UDCA absorption intermittently received higher doses of up to 30 mg/kg for up to 3 months. All 72 patients with dominant stenoses were treated by repeated endoscopic dilatation. Diagnosis of CCA was established in each case by histologic examination of tissue obtained at laparotomy or in the explanted liver at the time of liver transplantation. Results: The median treatment time of the 150 patients was 6.4 years. Altogether 5 patients developed a CCA during UDCA treatment yielding an incidence rate of 3.3%. The calculation of CCA per patient years revealed 0.58 CCA per 100 patient years in years 0– 2.5, 0.49 CCA in years 2.5–8.5, and no CCA thereafter up to 18 years after entry into the study. The Kaplan Meier estimate of CCA incidence during UDCA treatment reached a plateau after 8.3 years. All 5 patients with CCA belonged to the subgroup of patients with colitis and in addition to the subgroup of patients with dominant stenosis. Summary and conclusion: The annual incidence rate of CCA in PSC treated with UDCA is low and decreases with time of treatment. Compared with the CCA incidence rates reported in studies on the natural course of the disease, the CCA incidence after UDCA treatment was lower than expected. > > Cholangiocarcinoma is the ticking time bomb that we all worry about. > ... . The risk might be 1% per year. Quote Link to comment Share on other sites More sharing options...
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