Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Jerry, When I read my patient notes, I am often confused by the medical language and notations. I have asked what is means, even after I've returned home from a long distant visit. My coordinator has taken my concern to a higher authority to get answer for me. It is worth the peace of mind to hear her tell me what it means, as well as why it was included.
However, if I were in your situation, with prior cancer diagnosis and treatment, I believe I would act more aggressively to get my question asnwered.
Do you have any appointments coming up? Have you messaged your coordinator? Does your local doctor communicate with Mayo transplant?

Jerry, I'm tagging @keggebraaten on this discussion. She may have some recommendations specific to Mayo Clinic Rochester, similar to the resources @afrancesca mentioned that she found at the Phoenix location.

@jerrydrennan,
Hi Jerry. I am sorry you have had a communication breakdown with our team. I am happy to try to help. If you are a transplant patient at Mayo, then I am certain you have seen a social worker, probably several times, in your appointment processes. You are very welcome to call the toll free number (866-227-7501) or send a secure online message directed to your nurse, your doctor, or your social worker. Any of them should be able to help with your questions, and your social worker, as stated above, can help you with your communication issue. It's important to us that our patients understand their care and their diagnosis and have a full understanding of what they are reading in their online records. If you have specific questions or want me to send a note to someone on your team, please message me privately and I am happy to do so on your behalf. Thanks!

I receive Chemo every other week

Do you have bile duct cancer? How many rounds of chemo did u have e?

I had 4 rounds of chemo. It is stage 4 and nonsurgical. So I do my chemo hipeing it will shrink it enough to live the 5 years they say I can. I am 52 year old female. I became ill lat October. Since then I have been to 11 ER visits, several hospital stays and my gallbladder out. Blood work always came back good. The last ER visit I went to I was jaundice and that's how they found my cancer. I have been dealing with diagnosis since May 2019. Thanks in advance for your time

@chicory2010, I want to welcome you to Connect. By way of introduction, I had a liver disease and received a transplant, so I am familiar with jaundice, and ER, and hospital overnights. I am not experienced with having cholangiocarcinoma, and so I would like to ask @lisamb, @jerrydrennan, @jodee, @afrancesca to this discussion.

Chicory2010, How do you feel after having had 4 rounds of chemo? Has the jaundice gone away? Do you have to maintain a special diet?

Here is an article, Bile Duct Cancer, and a podcast video that I located in the Connect Pages>Podcasts>Bile Duct Cancer.
https://connect.mayoclinic.org/page/podcasts/newsfeed-post/bile-duct-cancer/

@chicory2010
Hello I am Jerry
I was diagnosed with de novo prehillar cholangiocarcinoma.
I have been thru protocol and received a liver transplant.
My old liver still had residual adenocarcinoma and peranural invasion. I have been told I have 3-5 yrs.
I am a yr into this now. I am not sure how I can help you. But i am available for any thoughts or questions. My heart and Prayers go out to you.
I was diagnosed in Feb. 2017.
God Bless
Jerry Drennan

Wondering if anyone else has cholangiocarcinoma? Would like to chat if you are interested.

Hi @clarke6, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about cholangiocarcinoma. I did this so you can connect with other members who have experience with bile duct cancer like @kjrita @alcabrer @krishh @jnc1955 @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 and others. Click VIEW & REPLY to scroll through past posts.

Back to you Clark. When were you diagnosed with cholangiocarcinoma? What treatments have you had and how are you doing?