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

Posted by krishh @krishh, Jul 15, 2017

I’m on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

Liked by jerrydrennan

@jerrydrennan

@afrancesca
Thank you for the information . I was diagnoised with CC in 3-2017 i under wnt the chemoradiation brachey theraapy to have a liver transplant. I was transplanted sept 2018. I have found out by reading my record that my explant tested positve or active adenocarcinoma resedue. Positive for perinuerl invasion. When i asked my Dr about what was going on they want to start me on chemotherapy / antirejection. Now that i have had the tranplant are these tratments a option for me. I had volunter for several studys . But nothing was told to me about the results. Thank ou fr your time
God Bless

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Wow, Jerry. That is an interesting question.
Have you considered asking your doctor to explain this to you? If you are not due for an appointment in the near future, why not send the question to your nurse coordinator thru the patient portal?

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@rosemarya
Well , there has been a communication breakdown for me and the n.c. what I listed above is just part of what happen or did not happen on my 4 month check up. What I listed above I found in my portal in notes and documents. I had not known about this until I got home.
God Bless
Jerry.

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@jerrydrennan

@afrancesca
Thank you for the information . I was diagnoised with CC in 3-2017 i under wnt the chemoradiation brachey theraapy to have a liver transplant. I was transplanted sept 2018. I have found out by reading my record that my explant tested positve or active adenocarcinoma resedue. Positive for perinuerl invasion. When i asked my Dr about what was going on they want to start me on chemotherapy / antirejection. Now that i have had the tranplant are these tratments a option for me. I had volunter for several studys . But nothing was told to me about the results. Thank ou fr your time
God Bless

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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.

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@afrancesca

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.

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

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@jerrydrennan

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

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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.

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@afrancesca

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.

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@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.

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@jerrydrennan

@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.

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

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@jerrydrennan

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

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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?

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@jerrydrennan

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

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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.

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@colleenyoung

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.

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@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!

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I receive Chemo every other week

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@krishh

I have cholangiocarcinoma. I've been dealing with it for 27 months. What kind of questions do you have? Happy to correspond with you if you wish.  ~ Kris

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

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@colleenyoung

Welcome to Connect. We look forward to getting to know more about you.
I’d like to first introduce you to Teresa @hopeful33250. While Teresa doesn’t have bile duct cancer, she has had 3 occurrences of neuroendocrine tumors and knows what it is like to get repeated diagnoses and treatments. While wait for other people with bile duct cancer experience, I’d like to get to know a bit more about you. What treatments have you had in the past and what treatment are you currently receiving? How are you doing with the treatment and its side effects?

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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

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@chicory2010

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

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@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/

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@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

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