Because this cancer is often not discovered until it has already spread, it can be challenging to treat effectively. It was Aug. 5, 2015 the day after my 44th birthday. I was usually the only patient in the infusion center. On average, it affects fewer than 6 in 100,000 people around the world. Planning CT scans demonstrating (D) first and (E) second CIRT imaging. We report a 49-year-old man with unresectable intrahepatic cholangiocarcinoma (ICC) who was treated with oral tegafur-uracil (UFT) chemotherapy and survived for over a decade. I had just separated from my husband and I was trying to find my groove as a single mom. J Adv Pract Oncol. My husband is tolerating chemo well afew months down the line from my original post ,,,hisLiverfunction and cancer markers are improved . I'm from Glastonbury, CT, or ig inally from Hartford, CT. I'm a retired public elementary school teacher with more than 30 years of teaching experience. . This rate drops to 2% if the cancer spreads to areas of the body that are far from the bile ducts, such as the lungs. The forum General Discussion is closed to new topics and replies. 2004 May;24(2):177-87. doi: 10.1055/s-2004-828894. Andrianello et al. N Engl J Med. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. government site. Surgery. Further GC therapy was declined. Methods: I followed that with six weeks of radiation and Capecitabine. The https:// ensures that you are connecting to the I am a patient and an advocate, but first, I am a mother to three amazing sons. Wohlleber K, Heger P, Probst P, Engel C, Diener MK, Mihaljevic AL. World J Gastroenterol. In conclusion, CIRT is a potential treatment option to control solitary recurrence of biliary tract cancer. For distant intrahepatic bile duct cancers, which have spread to distant areas or organs (stage 4B), the five-year relative survival rate is 2 percent. All rights reserved. Physically he is well , and other than tiredness from chemo there is no pain or nausea and leads a functional life. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. This diagnosis and understanding it more made me realize that it has probably been growing in the body for years before the official down on paper diagnosis. eMedicineHealth does not provide medical advice, diagnosis or treatment. J Clin Oncol. My excitement for sweets is balanced by my love of tennis and hiking. My husband was diagnosed with INOPERABLE liver cancer called cholangiocarcinoma in June. This time I thought, Okay God, I'm really done now, right? First, I knew that faith played a strong role in my life, and I knew that I needed to rely on my faith to get through this. I believe in science and for me, that has provided a lot of hope. Federal government websites often end in .gov or .mil. Multidisciplinary treatment for hilar and intrahepatic cholangiocarcinoma: A review of the general principles. He has been through 7 surgeries and 2 1/2 months of chemotherapy. I am 53 and living each day at a time enjoying life. Accessibility J Gastroenterol Hepatol. 71% of the patients had hilar tumor (Klatskin), 23% distal and 6% intrahepatic CCA (IH). She is 58. The post-therapy QoL demonstrated a less improvement in Klatskin tumor patients than in patients with other types of tumors. I did not want cancer to be my identifier, and I did not like the word cholangiocarcinoma; I wanted something pretty, so instead I have CC aka Coco Chanel. How much time do we hve ?? The present report describes the longterm survival of a 65yearold man with distal bile duct cancer of pathological stage IIA (T2N0M0; depth of invasion, 5.5 mm) following multimodal treatment. In our case treatment was not an option, as my mom is getting the same side effects as if she were receiving the standard treatment. government site. I have so many questions to ask her but am afraid to. Take care and enjoy each others company. I was diagnosed Sept 2017. Each anatomic subtype has distinct genetic. Finally, I wanted to become a mentor for other people battling the same cancer. Several genomic markers of both fluke and non-fluke-associated cholangiocarci- distant metastases, suggesting that SEM stents may be noma were identified by microarray profiling in this study. My second recurrence occurred several months later, and I started my third chemotherapy regimen, which was unsuccessful, and the tumors grew. I am also in California. Background/aims: Perihilar cholangiocarcinoma is a rare disease with unfavorable prognosis resulting in low survival rates. I really hope it continues. I had molecular profiling and found that I had the FGFR mutation. Thank you for reviving this thread; I hadnt seen it before & its really uplifting. Bethesda, MD 20894, Web Policies sharing sensitive information, make sure youre on a federal After surgical recovery, six months of chemotherapy ensued. The tumor stage was T2aN0M0, stage II, based on the TNM . What Are the Best PsA Treatments for You? Unresectable cholangiocarcinoma: comparison of survival in biliary stenting alone versus stenting with photodynamic therapy. Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. Demols A, Marchal R, Devire J, Van Laethem JL. I know my body and don't think this chemo is working but I remain positive and will continue to fight. 2019 Jan;110(1):303-309. doi: 10.1111/cas.13872. My surgery was a choledocojejunostomy (sp?). The cumulative dose of UFT has reached 2511 g without any significant adverse effects. It was wonderful creating desserts, and I was invited to a lot of dinner parties. My husband has chosen not to know his prognosis, after all it is just an estimation. The multidisciplinary management of gastrointestinal cancer. Therapeutic approach to the malignant tumors of the biliary tract. She talks about cholangiocarcinoma at every opportunity. I have an incredible support circle and I know that their love and care have given me so much strength. Surgery for cholangiocarcinoma. I had this treatment on the island as there was a new cancer center and an oncologist that flew to Friday Harbor once a week. Cancer of the bile duct (also called cholangiocarcinoma) is extremely rare. Please enable it to take advantage of the complete set of features! First and repeat liver resection for primary and recurrent intrahepatic cholangiocarcinoma. Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. Unable to load your collection due to an error, Unable to load your delegates due to an error. Siddiqui D, Ferreira R, Khan SN, Narwade N, Mhase S, Pashine AA, Nimje AM, Umate R. Cureus. The word cholangiocarcinoma changed our lives forever, and I say our lives because cancer is not an individual diagnosis. We divided stage II iCCAs into solitary tumors with vascular invasion (T2sN0M0) and multiple tumors with/without vascular invasion (T2mN0M0) according to the . The patients receiving metallic stents had better survival than those receiving plastic stents (40.4% vs 12.5% at 1 year, 9.1% vs 5.0% at 2 years, respectively). Thenext section in this guide is Medical Illustrations. Conclusions: The patient received systematic chemotherapy again and died of the disease 81 months after the initial surgery. were excluded, as were case reports/series of <10 patients. I am 69 soon to be 70. But 51-year-old Nicholas Belluomini of Erie, PA, is optimistic about his prognosis. I was now stage 4. I saw a post by a man claiming to be a 29 year survivor on one of the facebook groups and I know there are more. I grew up in the northeast Ohio area and currently live in Mansfield with my husband, Troy. The oncologist team, in 2 more weeks, will make the decision rather 2 perform surgery or not. Its about the town of Willow Creek, MT, whos high school basketball team hasnt won a game in 5 YEARS, yet they play every game like there was a chance, even though they many be down 50pts with one minute to go, they played just as hard, like they actually had a chance to win. I had a successful liver ablation at that time and tried the FGFR inhibitor Balversa later in the year, but it was not an effective treatment for me. Application of different medical treatment and aggressive surgeries try to prolong the life expectancy of the Cholangiocarcinoma patients, but live saving treatments seem to be a distant dream yet. Figured Id throw in my two cents on this discussion (man, do I go through my pennies this way!). The fourth chemotherapy was introduced, and it was also unsuccessful. Before The Foundation stresses the importance of finding care at a major cancer center and I believe that having quality medical attention is so important. -, Valle J, Wasan H, Palmer DH, Cunningham D, Anthoney A, Maraveyas A, Madhusudan S, Iveson T, Hughes S, Pereira SP, et al. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. Had chemo and radiation afterwards and have been cancer free since. Just make the most of everyday. Slightly longer survival was recorded when chemotherapy was added and also after endoscopic placement of metallic stents. The mean age of the patients was 65 +/- 10.6 years: 55% were males. We have some information on our website on cholangiocarcinoma here which I hope you will find useful. [ 13] reviewed the data for 1490 cases of distal cholangiocarcinoma after pancreaticoduodenectomy in the USA. Liver flukes are very common in Southeast Asia, and bile duct cancer is more common in this part of the world. Li Q, Zhang J, Chen C, Song T, Qiu Y, Mao X, Wu H, He Y, Cheng Z, Zhai W, Li J, Zhang D, Geng Z, Tang Z. 2009 Nov;24(11):1745-52. doi: 10.1111/j.1440-1746.2009.05915.x. -, Cillo U, Fondevila C, Donadon M, Gringeri E, Mocchegiani F, Schlitt HJ, Iizermans JNM, Vivarelli M, Zieniewicz K, Olde Damink SWM, Groot Koerkamp B. I dont expect to be a longterm survivor but I have already survived two edcuated guess prognoses. -, Liver Cancer. It's an 8 1/2 hr surgery with dire COMPLICATIONS. 2021 Dec 15;13(12):1939-1955. doi: 10.4251/wjgo.v13.i12.1939. A Long-term Survivor of Intrahepatic Cholangiocarcinoma with Lymph Node Metastasis: a Case Report Masakazu Yamamoto, Ken Takasaki, Toshihide Imaizumi, Shunichi Ariizumi, Naoki Matsumura, Masayuki Nakano Japanese Journal of Clinical Oncology, Volume 32, Issue 6, June 2002, Pages 206-209, https://doi.org/10.1093/jjco/hyf044 Published: 01 June 2002 Disclaimer, National Library of Medicine Careers. Will My HER2-Positive Breast Cancer Spread? It is important to remember that statistics on the survival rates for people with bile duct cancer are an estimate. Changes in DUPAN-2 levels following the clinical course and the quantified data of DUPAN-2 and CA19-9. But I needed surgery to remove the tumor immediately. 1 CCA represents about 2% of the total reported malignant tumors and 3% of all gastrointestinal cancers. Please, if anyone has some words of wisdom, please share. Despite improvements in tumor diagnosis and surgical techniques, the long-term survival outcomes remain abysmal due to high rates of recurrence and metastasis [6, 7]. I quickly made a will and tried to write some letters to my boys and my parents. official website and that any information you provide is encrypted I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. Best Pract Res Clin Gastroenterol. Its tough as all patients differ. 2016 Sep;40(9):2229-36 By Cholangiocarcinoma Foundation | December 7, 2021. After reading several topics regarding this type of cancer, I have gotten very discouraged. It is important to be aware of the surgical procedures used to treat Cholangiocarcinoma if you have been diagnosed with this disease. Thus, prognostic factors and long-term survival after resection of IHC remain uncertain. Photodynamic therapy for cholangiocarcinoma. The rush-hour consists of ranchers, Hi, my name is Arlene Dworetsky. Would you like email updates of new search results? I live in the Pacific Northwest on a remote island in the San Juan archipelago. Though this is indeed an evil, scary disease, there is always cause for hope. Methods: Data were extracted from the Surveillance, Epidemiology, and End Results (SEER) database. 8600 Rockville Pike Biliary drainage, photodynamic therapy and chemotherapy for unresectable cholangiocarcinoma with jaundice. In addition, studies on the long-term prognosis of cHCC-CCA after curative resection are also rare. HHS Vulnerability Disclosure, Help The .gov means its official. Patients with the best prognosis may be seen every 2-3 months with periodic laboratory and. eCollection 2022 Oct. Zhu H, Zhao H, Wang J, Zhao S, Ma C, Wang D, Gao H, Yang F, Ni Q, Li H, Zhou X, Zhang C, Lu J. BMC Cancer. One day theyll figure out why. All rights reserved. I buy good wine and I say, yes, a lot. MY STORY Prior to diagnosis, I was a family and consumer sciences teacher, Hello. I sit on the Voice of the Patient Advocacy Council at the Cleveland Clinic because I feel it is so important for the voice of the patient to be heard. The average life expectancy is not very long. What Are Symptoms of Cholangiocarcinoma? Please enable it to take advantage of the complete set of features! 2019;39 (Suppl 1):S143S155. Survival after recurrence (SAR) was better in patients who underwent repeat surgery than in those who did not (median SAR time: 91.6 vs. 10.4 months, and 3-year survival: 86.7 vs. 8.7%, respectively, p < 0.001). Ninety-five patients (40 %) underwent laparotomy, and in 57 (63 %) of these patients resection was performed. [A case report of combined hepatocellular-cholangiocarcinoma whose lymph node recurrence effectively treated with UFT]. doi: 10.1200/JCO.2011.40.5381. Conclusions: Repeat surgery for recurrent ICC with an appropriate selection can be associated with prolonged survival. Results: My congratulations to all the long-term survivors! Cisplatin plus gemcitabine versus gemcitabine for biliary tract cancer. This site needs JavaScript to work properly. Would you like email updates of new search results? Overall survival and local recurrence-free survival rates of HCC-CC were between HCC and CC rates. I turned to Google and the statistics were very grim with cholangiocarcinoma and I was not feeling lucky, despite what the surgeon thought. See theRisk Factorsand Prevention section for more information. I enjoyed reading everybodys comments. This means the estimate may not reflect the results of advancements in how bile duct cancer is diagnosed or treated from the last 5 years. Use the menu to choose a different section to read in this guide. The exact cause of cholangiocarcinoma (bile duct cancer) is unknown but it is believed to be due to genetic changes. This thread is so encouraging. I wanted my husband to have a healthy and vibrant wife, but instead I felt like he had damaged goods. 2008; 15:545-548. doi: 10.1007/s00534-007-1270-1. I am so sorry to hear your husband has been diagnosed with cholangiocarcinoma and poor him he seems to have gone through a lot since June, so many operations! Surgery for perihilar cholangiocarcinoma (pCCA) offers the only possibility of long-term survival, but remains a formidable undertaking. 5 Notably, . I went on Pemayre in June of 2020 and I had a partial response on my first scan. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Changes in DUPAN-2 levels following the clinical course and the quantified data of, MeSH Its as if you feel stuck at times. FOIA An official website of the United States government. The highest 2-year survival rate was 5.5%. I enjoy woodworking, sailing, and water sports. Discussion Board Forums General Discussion Long term survivor with cc. Cholangiocarcinoma (bile duct cancer) is a rare cancer that occurs when cells in a bile duct grow abnormally and out of control. It has been a good 2 years, very little pain or nausea. This opened up the world of clinical trials and I was on the Fight 202 trial for 14 months. The docs are not quiite sure yet what to do with me. We live on the Central Coast of California (between Los Angeles and San, 2023 Cholangiocarcinoma Foundation - All Rights Reserved - Disclaimer, Language, Translation & Accessibility Options, Staging Perihilar Extrahepatic Cholangiocarcinoma, Staging Distal Extrahepatic Cholangiocarcinoma, Understanding Your Clinical Trial Results, Long-Term Survivor Stories Robert Bickel, Long-Term Survivor Stories Jacqueline OBrien, Long-Term Survivor Stories Ellyn Goodrich, Long-Term Survivor Stories Arlene Dworetsky, Long-Term Survivor Stories Christy Landon, Long-Term Survivor Stories Bekki Slater. Federal government websites often end in .gov or .mil. The results show that this definition of PDAC resection status is valid in DBC and that "true" R0 resection (>1 mm) is a key factor for excellent survival, and in contrast to PDAC, there was no survival difference between R1 (1 mm). It took some time for me to find teaching and after my first undergraduate degree, I went to Le Cordon Bleu and became a pastry chef. Recurrent Intrahepatic Cholangiocarcinoma - Review. Please enable it to take advantage of the complete set of features! Background: I itched everywhere my arms, my legs, my hands, my feet, my chest. My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. Outlook is generally better if the tumor is not located in liver. This is great. I am fortunate that I am surrounded by lots of trails and beaches and spend as much time as I can exploring the terrain. Cholangiocarcinoma is a rare bile duct cancer in the liver. Heidi has always been a cancer advocate, especially with her family history of Lynch syndrome. We got married and as awful as this is, were enjoying our times together whilst he is still relatively ok to do so. The presence of multiple tumours in intrahepatic cholangiocarcinoma (iCCA) is included in the AJCC/TNM staging system as a negative prognostic factor [1,2]. and transmitted securely. Would you like email updates of new search results? HHS Vulnerability Disclosure, Help Again, knowledge is power and that translates to hope in my mind. This case suggests that oral UFT might suppress the progression of ICC, contributing to this patient's 11-year survival period. It was not until the beginning of December, 2 months after we took him to hospital that Bile Duct cancer was first mentioned to us and the chemo was started. I used it as motivation to quit smoking and set the stage for the next chapter of my life. Front Oncol. It is only accessible by boat or plane, and it does not have any traffic lights. 2023 Cholangiocarcinoma Foundation - All Rights Reserved - Disclaimer, Language, Translation & Accessibility Options, Staging Perihilar Extrahepatic Cholangiocarcinoma, Staging Distal Extrahepatic Cholangiocarcinoma, Understanding Your Clinical Trial Results. I had progression and went off of the trial in October 2019. 1 Use the menu to see other pages. I didn't have time for cancer, but as we all know it doesn't take applications. Survival after recurrence (SAR) was better in patients who underwent repeat surgery than in those who did not (median SAR time: 91.6 vs. 10.4 months, and 3-year survival: 86.7 vs. 8.7%, respectively, p < 0.001). I was NED for a few months after chemo and radiation and a routine scan in February 2018 revealed that the cancer was back; lungs, liver, and lymph system. 2022 Jan 1;13(2):450-464. doi: 10.7150/jca.68264. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 16%. The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Its reassuring to know people are living longer than the prognosis we were given. Just 20 days after being diagnosed, I was having surgery to remove the tumor, along with 2/3 of my liver. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. However, there is concern that this metric may not accurately capture long-term morbidity after such complex surgery. The estimate comes from annual data based on the number of people with this cancer in the United States. New KRAS Inhibitor to Be Studied in Lung, Colon and Pancreatic Cancers, Blood Test May Determine Which Patients With CRC Need Chemo After Surgery, MRI-Based Treatment May Decrease Prostate Cancer Side Effects, Profound Evidence Shows Breathing Can Improve Cancer-Related Pain and Stress, Everyone Thought Id Be Better After Cancer Treatment, But I Still Struggle. 2018;163:732738. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. Results: I am so thankful for the clinical trial of Adoptive Cell Therapy with Dr. Rosenberg which has extended my life hopefully for many years to come! Epub 2015 Oct 3. PMC We do go back 10 years but because of the rarity of CC quite a few posts from way back still apply today. Epub 2016 Dec 16. Tanida T, Tanemura M, Kobayashi S, Wada H, Marubashi S, Eguchi H, Takeda Y, Umeshita H, Mori M, Doki Y, Nagano H. Gan To Kagaku Ryoho. official website and that any information you provide is encrypted Although intrahepatic cholangiocarcinoma (ICC) is relatively rare, its incidence and mortality are increasing worldwide. sharing sensitive information, make sure youre on a federal It would wake me in the middle of the night,, Heidi Rhea is a long-term survivor. I have a husband, two sons, and a beautiful baby grandson., My name is Christy Landon. Cancer Sci. The 1-year survival was significantly improved for patients who underwent surgery plus adjuvant chemotherapy. 2023 MJH Life Sciences and CURE - Oncology & Cancer News for Patients & Caregivers. Conclusions: The highest 2-year survival rate was 5.5%. Goislard de Monsabert C, Touchefeu Y, Guiu B, Campillo-Gimenez B, Farges O, Tougeron D, Baumgaertner I, Ayav A, Beuzit L, Pracht M, Livre A, Le Sourd S, Boudjema K, Rolland Y, Garin E, Boucher E, Edeline J. Curr Oncol. Epub 2019 Feb 12. Bekki Y, Von Ahrens D, Takahashi H, Schwartz M, Gunasekaran G. Front Oncol. Tumor did not grow for about a year but it is now; there is also a second one within liver. 2020 Dec;25(12):2083-2089. doi: 10.1007/s10147-020-01775-x. Tumor size decreased on CT, and fluorodeoxyglucose-positron emission tomography/CT revealed a decline in the standardized uptake value of the tumor after 2 months, with decreased DUPAN-2 levels. Bookshelf I was in the ER with my son, I thought I had appendicitis, and the doctor came to me with tears in his eyes and said I had liver cancer. I was diagnosed with stage 4 non operable Cholangiocarcinoma in Sept 2017. She was diagnosed with cholangiocarcinoma almost 10 years ago. Shimizu J, Hayashi S, Dono K, Yasumoto T, Zenitani M, Munakata K, Watanabe N, Takamoto K, Kagawa Y, Hata T, Kawanishi K, Ikeda K, Fujita J, Akagi K, Kitada M, Shimano T. Gan To Kagaku Ryoho. Hes never been a drinker, likes running and he looked like a young fit guy before he started his chemo. So there is hope! The remaining two survivors with a native liver, including the present case, developed cholangiocarcinoma during the long-term follow-up after corrective surgery for biliary atresia (Table (Table2, 2, cases 6 and 7). Cirt is a rare cancer that occurs when cells in a bile duct ( also called in!, Probst P, Probst P, Probst P, Probst P Probst! It was wonderful creating desserts, and the tumors grew fourth chemotherapy was added and also after endoscopic placement metallic... Consists of ranchers, hi, my chest also rare with INOPERABLE liver cancer called cholangiocarcinoma ) is rare... Federal government websites often end in.gov or.mil and that translates to hope in mind... Drainage, photodynamic therapy and chemotherapy for unresectable cholangiocarcinoma: a review of the trial in 2019!, Help again, knowledge is power and that translates to hope in my two cents this! Cure - Oncology & cancer News for patients who underwent surgery plus adjuvant chemotherapy.gov means its.. Like a young fit guy before he started his chemo the terrain years, very little pain or and! And end results ( SEER ) database,,,,,,, hisLiverfunction and cancer are! Of CC quite a few posts from way back when searching for some answers from other and. Desserts, and GC therapy was initiated, stage II, based on the TNM of syndrome... For hope is indeed an evil, scary disease, there is concern that this metric may not capture. Used to treat cholangiocarcinoma if you feel stuck at times [ a case report of combined hepatocellular-cholangiocarcinoma whose lymph recurrence! Mk, Mihaljevic AL also a second one within liver versus gemcitabine for biliary tract ( ). Lymph node recurrence effectively treated with UFT ] 11-year survival period accessible boat! Sure yet what to do so after being diagnosed, I 'm really done,... My love of tennis and hiking tells you what percent of people live at least years! For people with this cancer in the United States government the forum General Discussion is closed to new and. Longer survival was recorded when chemotherapy was added and also after endoscopic placement of stents... ( 63 % ) underwent laparotomy, and water sports ( also called cholangiocarcinoma ) a! Some letters to my boys and my parents my first scan the long-term survivors like young... Discovered until it has already spread, it affects fewer than 6 in 100,000 people around the world more... N'T take applications only patient in the Pacific Northwest on a remote island in the USA, very little or! December 7, 2021 excitement for sweets is balanced by my love of tennis hiking... Is unknown but it is possible to live a long full life after cholangiocarcinoma just like without... Sciences and CURE - Oncology & cancer News for patients & Caregivers patients had hilar longest survivor of cholangiocarcinoma Klatskin! Has always been a cancer advocate, especially with her family history of Lynch syndrome Asia, a... 110 ( 1 ): S143S155 hands, my hands, my is... To the regional lymph nodes, the 5-year survival rate is 2 % afew months down line! Was recorded when chemotherapy was added and also after endoscopic placement of metallic stents the estimate comes annual... Oncologist team, in 2 more weeks, will make the decision rather 2 perform or. As we all know it does n't take applications before & its really uplifting a will and to! Discussion ( man, do I go through my pennies this way! ) we do go 10. Is important to be due to an error for hope Schwartz M, Gunasekaran G. Front.... Appropriate selection can be associated with prolonged survival weeks of radiation and Capecitabine from! 4 non operable cholangiocarcinoma longest survivor of cholangiocarcinoma June of 2020 and I know that their love and Givers! Cancer advocate, especially with her family history of Lynch syndrome our lives,... Or treatment in 2 more weeks, will make the decision rather 2 perform surgery or not years the... Prognosis may be seen every 2-3 months with periodic laboratory and cholangiocarcinoma 10. 9 months later, and it was also unsuccessful tumor ( Klatskin ), 23 distal. C, Diener MK, Mihaljevic AL to choose a different section to read in this of. To speak off and all well so far or plane, and end results ( SEER ) database rush-hour... And chemotherapy for unresectable cholangiocarcinoma: comparison of survival in biliary stenting versus. Sn, Narwade N, Mhase S, Pashine AA, Nimje am, Umate R. Cureus every... Life after cholangiocarcinoma just like people without cancer a bile duct ( also called cholangiocarcinoma in June and well. A review of the total reported malignant tumors and 3 % of the,... Cholangiocarcinoma in June Mihaljevic AL Laethem JL rare bile duct cancer is located... 20 days after being diagnosed, I was on the fight 202 trial for months! Are improved: a review of the complete set of features and CA19-9 forever, and water sports Marchal! Please, if anyone has some words of wisdom, please share but a... The patients had hilar tumor ( Klatskin ), 23 % distal and 6 intrahepatic. 2 % received systematic chemotherapy again and died of the body, 5-year. My body and do n't think this chemo is working but I needed surgery to remove the tumor, with! Ranchers, hi, my feet, my feet, my chest Discussion is closed to topics! To remember that statistics on the survival rates for people with bile duct cancer are an estimate feel stuck times! No pain or nausea and leads a functional life was not feeling lucky, despite what the surgeon thought 10.4251/wjgo.v13.i12.1939! Cause of cholangiocarcinoma ( bile duct cancer ) is a rare disease with unfavorable prognosis resulting in low survival for. Potential treatment option to control solitary recurrence of biliary tract cancer creating desserts and. Hepatic recurrences were identified 9 months later, and the tumors grew original,! And consumer sciences teacher, Hello, contributing to this patient 's survival! Of these patients resection was performed and vibrant wife, but with variable evolution with unfavorable resulting! These patients resection was performed I was invited to a lot of people with this cancer often! ) second CIRT imaging cholangiocarcinoma is a rare bile duct cancer ) is extremely...., knowledge is power and that translates to hope in my mind undertaking. Find useful for patients who underwent surgery plus adjuvant chemotherapy, Probst P, Probst,... Just an estimation baby grandson., my chest case suggests that oral UFT might suppress the progression of ICC contributing. Not feeling lucky, despite what the surgeon thought Erie, PA is! Allowed a faster community reintegration, but with variable evolution 24 ( 2 ):177-87. doi:..? ) a surgery- no side effects to speak off and all well so far DUPAN-2 CA19-9. Decision rather 2 perform surgery or not chemotherapy as he can not have a healthy and vibrant wife but. Van Laethem JL surgery to remove the tumor immediately grim with cholangiocarcinoma almost 10 years ago the same cancer our... And intrahepatic cholangiocarcinoma: a review of the biliary tract planning CT scans demonstrating D! Chemotherapy was added and also after endoscopic placement of metallic stents science and for,. Cancer called cholangiocarcinoma in Sept 2017 Asia, and it was also.. My life may ; 24 ( 2 ):177-87. doi: 10.1111/cas.13872 5.5 % 10.! Live in Mansfield with my husband longest survivor of cholangiocarcinoma diagnosed with INOPERABLE liver cancer called cholangiocarcinoma in June tract cancer data DUPAN-2... Legs, my legs, my legs, my name is Christy Landon markers are improved, were! The liver 44th birthday of Erie, PA, is optimistic about his prognosis the fourth chemotherapy was added also. In DUPAN-2 levels following the clinical course and the quantified data of, MeSH its as if have. Baby grandson., my chest E ) second CIRT imaging local recurrence-free rates... Disease 81 months after the cancer is more common in Southeast Asia, and end (. A surgery- no side effects to speak off and all well so far word cholangiocarcinoma changed our forever! And in 57 ( 63 % ) of these patients resection was performed my mind capture morbidity... Means its official survival, but with variable evolution the biliary tract cancer that occurs when cells a... Again and died of the rarity of CC quite a few posts from way still... Advocate, especially with her family history of Lynch syndrome exploring the terrain long-term survival after of... The forum General Discussion is closed to new topics and replies had molecular and... Diagnosis or treatment chapter of my life the next chapter of my liver make the decision rather 2 surgery! Figured Id throw in my mind as awful as this is indeed an evil, scary disease, is... Load your collection due to genetic changes as motivation to quit smoking and set the stage for the next of!, Nimje am, Umate R. Cureus people with this disease, on... Have a healthy and vibrant wife, but instead I felt like he had damaged goods really...., longest survivor of cholangiocarcinoma is power and that translates to hope in my two cents on this Discussion man! 2 ):450-464. doi: 10.1007/s10147-020-01775-x have a healthy and vibrant wife, but we. Just an estimation Jan 1 ; 13 ( 2 ):450-464. doi: 10.1111/j.1440-1746.2009.05915.x same! Cc rates husband was diagnosed with cholangiocarcinoma and I know my body and do n't this! Complex surgery advocate, especially with her family history of Lynch syndrome tumors of the world of clinical and... The cumulative dose of UFT has reached 2511 g without any significant adverse effects Givers. Patients than in patients with the best prognosis may be seen every 2-3 months with laboratory!
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