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

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

I receive Chemo every other week

@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!

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.

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?

@afrancesca
So UHS Transplant is under MD Anderson. The are the local care for me as mentioned earlier.

@afrancesca
I started with UHS in SAn Antonio. They sent my case to MD Anderson. I was declined. UHS is Governed by MD ANDERSON . They sent me to the Mayo Clinic.

Jerry-if you are interested in getting a second opinion in Texas, Dr. Miland Javle at MD Anderson in Houston is one of the best known oncologists in the country for treating Cholangiocarcinoma.

@afrancesca
I am going to the Mayo in Rochester Minnesota
I also at university Transplant Center in San Antonio Tx for my local care.

I’m unfamiliar with treatments available post ptransplant. However, There are many patients connected with the Cholangiocarcinoma Foundation who have undergone transplants. I strongly encourage you to call the Cholangiocarcinoma Foundation and request to be assigned to a patient mentor and assigned to someone in the cholangioconnect program. They will match you up with people who have also gone through a transplant and can help connect you to resources that are specific to post transplant treatments . At which Mayo location are you being treated? At the mayo clinic here in Phoenix, you can request to see a social worker ( I recommend Elizabeth Matthews she is helpful and knowledgeable about how the Mayo works) To help you to re-open/repair communication between you and your healthcare team. If you are at another location, maybe this site’s monitor can make a recommendation for who the experienced social workers are at your location ? Furthermore, It is standard for many patients to get second opinions at 2 different major cancer centers at transition times in their treatment plans. While all the major centers have similar transplant protocols, different centers might offer different clinical trials/treatments for patients post-transplant. You are doing the right thing by staying on top of this now and searching for answers. I have recently just discovered this site and it is wonderful. However, this is such a specialized area even within colangiocarcinoma and again I urge you to contact the Foundation as they know all the transplant specialists and what is offered, including, of course, what is available at the different locations of the Mayo Clinic . I’ve learned that as a patient, it is my job to be my own advocate. Once you contact the foundation please let us know how it goes as maybe there will be others who come to the site who have the same questions.