Newly diagnosed
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Hello Susie…..welcome. Your age, resection, Stage II, and negative margins and no further involvement all look very promising for you to have achieved a cure. Congratulations.
I have learned that adjuvant therapy is still under investigation however, we have seen, on this site, an increase of treatment post surgery. Enclosed you find some links to current NCI sponsored clinical trials. I did not include those for extrahepatic disease. You may consult with numerous physicians and receive numerous answers however, due to the fact that standard of treatment post resection has not been established there really is no other way, but to inform yourself and to then make an educated decision. You will need copies of all records for further consultations with specialists treating this disease. This particular issue of adjuvant therapy has been a hotly debated issue on our site and I am hoping for others to chime in and share their thoughts with you also.
All my best wishes,
MarionThis one is recruiting lead by the University of Washington
http://clinicaltrials.gov/ct2/show/NCT01043172?term=adjuvant+therapy+for+cholangiocarcinoma&rank=6http://clinicaltrials.gov/ct2/show/NCT00789958?term=adjuvant+therapy+for+cholangiocarcinoma&rank=2
http://clinicaltrials.gov/ct2/show/NCT01073839?term=adjuvant+therapy+for+cholangiocarcinoma&rank=3
http://clinicaltrials.gov/ct2/show/NCT01043172?term=adjuvant+therapy+for+cholangiocarcinoma&rank=6
This is the link I used:
http://clinicaltrials.gov/ct2/results?term=adjuvant+therapy+for+cholangiocarcinomaDear Susie, welcome to our wonderful family but sorry you had to join us. Sadly we are getting more younger members lately, not sure if CC is increasing or if it is just that more people are finding us. I would like to congratulate you on being a CC survivor! Ah, the age old question of to chemo or not to chemo. I myself would go for a 3rd opinion and see if that one agrees with either of the first 2. Then you would have more to help you make up your mind. We are big here on more opinions. Once you make your decision, the protocol seems to be a visit to the ONC with LABS taken, every 3 months and either a PET or another type of scan twice a year. CC is a pesky little beast so the ONC will monitor you closely. You have a great attitude and that is a big part of the battle. I know you will be hearing from others now and please keep us posted.
Hi everyone. My name is Susie and I’m 31 living in Portland, OR. I had a liver mass discovered in April and underwent a left hepatectomy in May of this year. They also removed my gall bladder. It turns out I have stage II cholangiocarcinoma, the intrahepatic kind. I have no mets, negative lymph nodes and clean margins but my tumor was about 5 x 6 cm, so kind of big. I am recovering well after surgery and pretty much feel back to normal. My issue is I’m concerned about the next steps. I have gotten different opinions on additional treatment. I received my surgery at University of Pittsburgh Medical Center and was told I will need adjuvant chemo, either 5FU or Gemzar plus or minus Cisplatin. However, I live in Oregon, so that is where I am getting my follow up care. I am now receiving follow up care at Oregon Health and Science University and I was told I should get 6 weeks of radiation and maybe some oral chemo instead of what UPMC recommended. So, needless to say, I am confused about who I should listen to. I’m thinking about getting one more opinion. From what I understand, neither radiation or chemo has been proven effective, especially on someone like me who had the whole tumor removed. Does anyone have any experience with anyone my age having this? It seems so odd to me. I don’t really have any past medical history and have always been healthy. I was told cc has been increasing in the US for unknown reasons.
This is such a wonderful site. I was so happy to find it. I’m sorry there are so many others on here going through the same thing. Best of luck to you all!
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