New introduction – vt sister
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Jojo……….happy to hear that everything worked out well. Please know patients with cholangiocarcinoma (bile duct cancer) are at risk for a serious complication called ascending cholangitis; a bacterial infection of the biliary system, which can be fatal. The risk of this complication is highest in patients with biliary stents, biliary drainage tubes and/or patients who have had an ERCP or other medical procedure on the biliary tree. Patients must be acutely aware that temperature readings are of most importance, daily is best.
Additionally, we advice patients to carry on hand a biliary card. You may download the information here:http://cholangiocarcinoma.org/biliary-emergency-information-card/biliary-information-card/Good luck on the MRI test results and please keep us informed. We care and we are in this together.
Hugs
MarionJoJo,
Welcome to our group. It sounds like your sister has already been through much and I hope the scan results are positive. When my mother had SIRT the first time, although it didn’t shrink a lot in size, much of the tumor became necrotic. Rather than wait for it to advance again, we went through a second SIRT 9 months later in conjunction with xeloda ( IR said he could/should have done second treatment sooner, but it appears we were lucky and still did get good results) . Since Nov. 2014, all that she has is dead tumor tissue (we were also given 12-month prognosis).
Second and even third opinions can be invaluable.
Best wishes and let us know how you make out,
CatherineHi JoJo,
Glad you found us, but sorry for the reason that you had to come here. So sorry to hear of what your sister is going through. I think consulting Dr. Javle is a good move as I know of others on here that speak highly of him. You are doing the right thing by getting another opinion from a doctor who has more experience with this cancer. You have definitely come to the right place for information as there is a lot of knowledge on this site and everyone is willing to help in any way that they can. It is usually a little slower on the weekends, but I am sure others will be here to welcome you and advise you soon. Take care and update us on how your sister is doing when you can. We care.
Darla
Hi, my 45 yr old sister was diagnosed 11 months ago w CC at Mayo Rochester. She was being stented at Dartmouth for her then newly diagnosed psc when Dr noticed cell sheddiing. Mayo found 8cm tumor, to large for surgery and 6-1yr life sentence. She went to mass general as its largest center near us. She did gem/cis 3 rounds then got really sick. The dr wanted more chemo as he thought tumor was getting smaller. My sis said no that her body was to weak and felt she was dying. We took her to CTCA Atlanta where they found bad infection. They drained her high bile and gave her antibiotics, she was in hospital for week. They said chemo or radiation given to high bilirubin patients can kil them. Wow, that was news to us. They have great gastroenterologist Dr woods who stented her with longer stents to open up her bile ducts better than ever. Her bilirubin dropped from 17 to under2. She began to get more energy, hungry, etc totally different person than the prior month. She got SIRT Y90 this summer and we r going to get MRI next week to see if it shrunk. We have scheduled her to see Dr. jJavle at MD in 3 weeks, we felt she needs a more experienced oncologist for CC and PSC. This site has helped guide us as so many healthcare people no nothing of these rare diseases. Thank-you for all your posts, -JoJo
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