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

I'm not sure , I don't have psc or uc or chrones. All I have is the tumor. So I'm not sure where I fit. Maybe I fit in all of this or I don't. I have not found anyone. They all have had other issues that I do not have hence de unos. What I have figured out is the transplant is just apart of the journey with more to come. But thank you for that site ,yes it is information and inspiring. But what a roller coaster this is.

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Jerry @jerrydrennan
Staging can be a confusing concept. Simply put, staging is a set of tests done to find out how much cancer is in the body and where it is. Your cancer team will gather lots of different information to determine the stage from tests like:
– blood tests
– imaging studies: like CT scans, MRIs or ultrasounds are a few example of common imaging studies. Cholangiogram is a special imaging test that looks at the bile ducts to see if they are blocked, narrowed, or dilated (widened)
– biopsy: this is when a tissue sample is taken from the gall bladder to examine the cells under a microscope

You mentioned that you have perihilar bile duct cancer. That means is started in the hilum, the area just outside the liver. You also said you have stage 1, which means that the cancer has grown into deeper layers of the bile duct wall, such as the muscle layer or fibrous tissue layer but that it has not spread to nearby lymph nodes or to other parts of the body.

According to the American Cancer Society's website "For some people with unresectable intrahepatic or perihilar bile duct cancers, removing the liver and bile ducts and then transplanting a donor liver may be an option. In some cases it might even cure the cancer."
You can read more here: https://www.cancer.org/cancer/bile-duct-cancer/treating/surgery.html

Does this help explain the staging process? Since you have already been told that you have stage 1, what other staging tests do you have to have?

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@krishh

Thank you Kanaaz – to be clear, the metastasis is not IN the brain, but ON a bone. Some spreading into the brain can be seen on the MRI, but they are not calling it brain cancer. I've read the article you referenced above. Very technical but I did understand some of it. Prognosis does not sound too good, but then again that can be said for cholangiocarcinoma in general. My oncologist suggested we are probably seeing this rare metastasis because I am living longer than initially expected. At my diagnosis almost 3 years ago, they said I had maybe 2 years, so I'm beating the odds! Thanks again for the information. If you find anything else, please share. ~Kris

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Hi @krishh How are you doing? Have you received any more information about next steps for treating the metastasis? Is it brain or bone metastasis? Have they determined that yet?

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@colleenyoung

Jerry @jerrydrennan
Staging can be a confusing concept. Simply put, staging is a set of tests done to find out how much cancer is in the body and where it is. Your cancer team will gather lots of different information to determine the stage from tests like:
– blood tests
– imaging studies: like CT scans, MRIs or ultrasounds are a few example of common imaging studies. Cholangiogram is a special imaging test that looks at the bile ducts to see if they are blocked, narrowed, or dilated (widened)
– biopsy: this is when a tissue sample is taken from the gall bladder to examine the cells under a microscope

You mentioned that you have perihilar bile duct cancer. That means is started in the hilum, the area just outside the liver. You also said you have stage 1, which means that the cancer has grown into deeper layers of the bile duct wall, such as the muscle layer or fibrous tissue layer but that it has not spread to nearby lymph nodes or to other parts of the body.

According to the American Cancer Society's website "For some people with unresectable intrahepatic or perihilar bile duct cancers, removing the liver and bile ducts and then transplanting a donor liver may be an option. In some cases it might even cure the cancer."
You can read more here: https://www.cancer.org/cancer/bile-duct-cancer/treating/surgery.html

Does this help explain the staging process? Since you have already been told that you have stage 1, what other staging tests do you have to have?

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Thank you for the info.

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@jerrydrennan

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.

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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.

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@jerrydrennan

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.

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@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

Liked by jerrydrennan

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I thought I'd come join this little private band. Nice to know we won't be fighting to take turns to post seeing how we all have had to come up with something rare so as not to be like the other kids! 🙂 I'm Marcia and I'm a new member of this group. I only remember Super Bowl Sunday here in the Twin Cities because I was having my gallbladder removed due to gallstones! At least I didn't have to worry about fighting all the tourists! Little did I know that I'd get the news that I had cancer which put a big dent in my newly started retirement. I've done less than 2 months of FOLFOX which was disastrous. Neuropathy, as well as hand-and-foot syndrome, were the biggest bug-a-boos that I'd happily have never known about! My 95-year old mom bugged me to come to Mayo for a second opinion. They wouldn't see me until my round of chemo was done so they could see how useful it was. (I think I mentally refuse to "remember" the lingo because I don't want it to become my "normal"). They did make recommendations that my "poison of choice" as it were be changed and have decided to do surgery on June 7th as I've got intrahepatic cholangiocarcinoma left to deal with a staging of IIIB. I'd rather be number 1, but I didn't get asked my preference. We'll see how it goes. Nice to know that I'm not sitting by my lonesome, but I'd rather be sitting around the campfire roasting marshmallows with the rest of you under a totally different pretext!

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I was diagnosed with intrahepatic cholangiocarcinoma in Dec18. Just started treatment @ Mayo in AZ last week of Std Treatment cis/gem in combination with clinical Trial CX-4945 not sure what effect treatment will have yet but very optimistic and hopeful. Experimental can be a big decision and is not for everyone. They have said it is unresectable but I have read many hopeful stories of a better outcome than initially diagnosed so I will fight and maybe I can help with the discovery of better treatment options for others.

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@mcarrel

I was diagnosed with intrahepatic cholangiocarcinoma in Dec18. Just started treatment @ Mayo in AZ last week of Std Treatment cis/gem in combination with clinical Trial CX-4945 not sure what effect treatment will have yet but very optimistic and hopeful. Experimental can be a big decision and is not for everyone. They have said it is unresectable but I have read many hopeful stories of a better outcome than initially diagnosed so I will fight and maybe I can help with the discovery of better treatment options for others.

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My husband was diagnosed in January 2017 with perihilar cholangiocarcinoma at Mayo Clinic in Rochester MN. He had a liver transplant in June 2018. He is doing great! Is a transplant an option?

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@lisamb

My husband was diagnosed in January 2017 with perihilar cholangiocarcinoma at Mayo Clinic in Rochester MN. He had a liver transplant in June 2018. He is doing great! Is a transplant an option?

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It is my understanding that due to my molecular profile that a transplant is not an option yet I am hopeful that if treatment can shrink my tumor enough they may reconsider resection as a possible option at this point they really want to see its response to treatment. We all know that everyone does not respond the same. One step at a time is what I am doing at this stage.

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This is my first time posted on this discussion board. I am 48 years old and have been living with stage 4 unresectable cholangiocarcinoma in Phoenix, Arizona for almost 3 years now. I am also a volunteer patient advocate for the The Cholangiocarcinoma Foundation, the only Patient Advocacy organization for this disease in the U.S. I just returned from our annual conference in Salt Lake City where for three days, 480 clinicians, researchers, drug company representatives, patients, and caregivers, learned all about the newest research and treatments. I urge all of you who aren't aware of this organization to check it out at https://cholangiocarcinoma.org. This site has a wealth of knowledge—you can read patient stories, watch all the presentations from the prior years' conferences (this year's will be posted in the next couple of weeks), and learn about clinical trials. The Mayo Clinic has a strong presence in this organization. This year, Lewis Roberts, a researcher at the Mayo in Rochester was the conference co-chair. My oncologist, Mitesh Borad(at Mayo Phoenix) gave a presentation as well and is one of the leading researchers in Cholangiocarcinoma in the country. The foundation has trained patient mentors, like myself throughout the country who can help point you to the right resources. You can call the foundation directly at (888) 936-6731 or feel free to post a question and I can answer any questions you may about how the organization can assist you. Have hope, everyone—there are many brilliant and caring minds and hearts working hard to find a cure as well as to bring to market new treatments that can improve our quality of life by keeping our disease stable. Since you are all being treated at one of the Mayo Clinic locations, you will understand the importance of Molecular profiling. If not, I urge you to view this 2 minute animated video just released by the foundation:

When my tumor tissue was sent out by the Mayo for testing —(molecular profiling/genomic profiling/next generation sequencing….all mean the same thing), it was found to have the FGFR2 mutation. I had previously had the standard gem/cis chemo regimen followed by a y90(local radioembolization to the liver). But the knowledge of my tumor's specific mutation led me to being eligible for a drug trial at the Mayo here in Phoenix which has kept my tumor stable for the last 18 months with very manageable side effects. While I know that eventually, the cancer will find a way to "outsmart" the drug, because I keep up to date with all the new research and trials, I already have a plan B and C lined up. I have my scans at the Mayo later this morning. Wish me luck! Sending you all hope and peace today. —Andrea

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@mcarrel

I was diagnosed with intrahepatic cholangiocarcinoma in Dec18. Just started treatment @ Mayo in AZ last week of Std Treatment cis/gem in combination with clinical Trial CX-4945 not sure what effect treatment will have yet but very optimistic and hopeful. Experimental can be a big decision and is not for everyone. They have said it is unresectable but I have read many hopeful stories of a better outcome than initially diagnosed so I will fight and maybe I can help with the discovery of better treatment options for others.

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This is a very promising new first line trial. Glad you are on it. Who is your doctor here in AZ? I've been on a clinical trail here @ Mayo in AZ (Pemigratinib-a gene inhibitor drug that targets the FGFR2 mutation) and on it I've have stable disease with a high quality of life for 18 months now. See my post earlier this morning about all the available resources at the Cholangiocarcinoma Foundation. Happy to connect with you locally—I've been through the gem/cis regimen(back in 4/18) and come out the other side so happy to offer you some hopeful words if you need them. —Andrea

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@afrancesca

This is my first time posted on this discussion board. I am 48 years old and have been living with stage 4 unresectable cholangiocarcinoma in Phoenix, Arizona for almost 3 years now. I am also a volunteer patient advocate for the The Cholangiocarcinoma Foundation, the only Patient Advocacy organization for this disease in the U.S. I just returned from our annual conference in Salt Lake City where for three days, 480 clinicians, researchers, drug company representatives, patients, and caregivers, learned all about the newest research and treatments. I urge all of you who aren't aware of this organization to check it out at https://cholangiocarcinoma.org. This site has a wealth of knowledge—you can read patient stories, watch all the presentations from the prior years' conferences (this year's will be posted in the next couple of weeks), and learn about clinical trials. The Mayo Clinic has a strong presence in this organization. This year, Lewis Roberts, a researcher at the Mayo in Rochester was the conference co-chair. My oncologist, Mitesh Borad(at Mayo Phoenix) gave a presentation as well and is one of the leading researchers in Cholangiocarcinoma in the country. The foundation has trained patient mentors, like myself throughout the country who can help point you to the right resources. You can call the foundation directly at (888) 936-6731 or feel free to post a question and I can answer any questions you may about how the organization can assist you. Have hope, everyone—there are many brilliant and caring minds and hearts working hard to find a cure as well as to bring to market new treatments that can improve our quality of life by keeping our disease stable. Since you are all being treated at one of the Mayo Clinic locations, you will understand the importance of Molecular profiling. If not, I urge you to view this 2 minute animated video just released by the foundation:

When my tumor tissue was sent out by the Mayo for testing —(molecular profiling/genomic profiling/next generation sequencing….all mean the same thing), it was found to have the FGFR2 mutation. I had previously had the standard gem/cis chemo regimen followed by a y90(local radioembolization to the liver). But the knowledge of my tumor's specific mutation led me to being eligible for a drug trial at the Mayo here in Phoenix which has kept my tumor stable for the last 18 months with very manageable side effects. While I know that eventually, the cancer will find a way to "outsmart" the drug, because I keep up to date with all the new research and trials, I already have a plan B and C lined up. I have my scans at the Mayo later this morning. Wish me luck! Sending you all hope and peace today. —Andrea

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Hi Andrea, Fabulous information! Thank you.
You'll notice that I removed your phone number. We recommend not sharing personal contact information on the public forum. I hope people will ask you question on the forum as it will be of benefit to many that way.

Best of luck with your scans today.

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@afrancesca

This is a very promising new first line trial. Glad you are on it. Who is your doctor here in AZ? I've been on a clinical trail here @ Mayo in AZ (Pemigratinib-a gene inhibitor drug that targets the FGFR2 mutation) and on it I've have stable disease with a high quality of life for 18 months now. See my post earlier this morning about all the available resources at the Cholangiocarcinoma Foundation. Happy to connect with you locally—I've been through the gem/cis regimen(back in 4/18) and come out the other side so happy to offer you some hopeful words if you need them. —Andrea

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Andrea, Welcome to Connect and for sharing this information. I am not experienced with any of this and I appreciate seeing the promise of treatment options for those who are affected. Words of hope and encouragement are vital to positivity during a serious medical diagnosis.
Andrea, This is a publicly viewed sight, and for your own protection and privacy, I urg you not to post your personal contact information.

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@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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