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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?
Liver Cancer | Last Active: Oct 2 4:33pm | Replies (219)Comment receiving replies
I have been diagnosed with de novo perihilar cholangiocarcinoma . I am at stage 1 the tumor is at the edge of the liver. non resectable. I have been listed for a transplant. I have been focused on the transplant forum. I have checked this forum and found this discussion. I got in wrong I am still learning this communication forum. I have gone thru the chemoradiation and brachey treatment as I wrote earlier. I have read these post over and over several times. the more I read the more questions I have . I have been on xeloda treatment since june of 17. I have hade side affects. I am not sure if I fit the category. there appears to be multiple stages which have not been discussed with me yet. I thought the journey was the transplant. there appears to be more. I have not had any one to talk to out side the DR office until last week when I found this while looking for answers. this seems to be longer issue than I expected. i have realized i don't have much to add but more to learn.
Replies to "I have been diagnosed with de novo perihilar cholangiocarcinoma . I am at stage 1 the..."
My husband was diagnosed with cholangiocarcinoma the end of January 2017. He has had a couple of episodes of infections along this journey that has required hospitalizations. For the most part he has been doing pretty good all things considering. He even continues working part time. We are doctoring at mayo in Rochester. Because of the numerous infections he has been off chemo pills since July and has been on antibiotics ever since November. He is now at meld 31. He had his staging 3 weeks ago and all went good! He is now officially activated and we have our phones on 24/7 waiting for the call of a liver available! My husband has stayed very positive thru this journey we are on...me I've had ups and downs which is to be expected. We live 80 miles from Rochester and feel very fortunate for our close proximity. I just found this web site a few days ago and this being my first post. If there are any questions, don't hesitate to ask.
@lisamb, I want to welcome you and your husband to Mayo Connect. I am happy that your husband is now activated on the transplant list. As a liver/kidney recipient, I can remember that time of my life. My husband and I used to constantly check to be sure our phones were still properly working!
I would like to invite you to also look at the Transplant Discussion Group where you will meet others who are also waiting for their transplants. You are among friends here on Connect. We share, we encourage, and ask/answer questions. Join in any where.
https://connect.mayoclinic.org/group/transplants/
Prayers for strength and for patience.
Rosemary
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@jerrydrennan, Here's what I just found!
I want to share a patient story from the Transplant Pages about a patient with PSC and cholangiocarcinoma. https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/
Be sure to read to the end where you will read: "To learn more about Maikki's story, visit the blog where she and Jenifer share their thoughts on organ donation: http://www.liversisters.com/." You will find a variety of good information in Blog, Resources, and also a Contact Us section.
Let me know if this gives you anyone or anything to help you.
Rosemary