cholangiocarcinoma

Posted by Susan Jilk @susanjilk, Aug 15, 2011

I have PSC (primary sclerosing cholangitis) and have had “highly suspicious” ERCP brushing reports. Is there anyone out there who has come across the same “diagnosis” and tell me more about your story?

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Do you know about http://www.pscpartners.org and http://www.cholangiocarcinoma.org …both good sites….DON’T let the last site scare you….I had both psc and CCA…transplanted at Mayo AZ. 2009….if your at Mayo be sure you ask for the F.I.S.H test…. Good luck Gods speed:)

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Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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@rosemarya

Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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Glad to hear about your successful transplant. It is difficult to find blogs on CaringBridge or CarePages that I can connect with that are female. I was beginning to think that perhaps the results for women receiving transplant wasnt good.

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Hi Sue, Hope all is going well. I will be at Mayo from July 27th until September. If you are around during that time you can reach me at 262 374 9064.

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@rosemarya

Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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Hi! I am Alx-a 36yr old female w/PSC. I was diagnosed@ Mayo-Rochester. I have been a patient there since 1999, when I had my colon& sm bowel removed due to cancerous ulcerative colitis. Since then, I have had 13 major surgeries &many minor. I was diagnosed w/PSC after 3 yrs of being sicker than ever before! I have not yet had a transplant, due to a yr&1/2 of an unexpected remission. (It was a well-needed break!!!) surgery is also much more risky for me due to an auto-immune disease, (similar to lupus), that affects my healing process in a huge way! I would love to get feedback from you about your process with PSC & how you are doing. Pretty scary stuff!!! ; ( Take care!
Your PSC-sister, Alx R.

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@rosemarya

Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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Alx, I had PSC for about 10 years before my symptoms began to develop. It is a real scary, I agree. After I began to develop the bothersome symptoms, and my liver began to decline, I was listed for a transplant. I did get very ill as the psc progressed. You are in a good place of treatment at Mayo.
I recieved my transplant in 09 at Mayo. My recovery was immediate. And I am able to enjoy a full active life
If I can be of any help by answering any questions about my experience, I am happy to do so.
Rosemary

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@rosemarya

Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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Thanks, Rosemary! Your story of success,following liver transplant, helped calm my nerves. I just got home from Mayo, due to some of my intestinal issues, post-surgeries. While I was there, they found that my 2nd-tier liver enzymes are abnormal again. Not as bad as when I was first diagnosed with PSC, but I am, gradually, headed back to the full liver transplant list. Honestly, I am ready to get it done and begin my recovery process, and thus, my new life! I’m not looking forward to the severe sickness leading up to the surgery, but I feel ready to hit it HEAD-ON!!!- (just like my colon!) I am SOOO fortunate to be able to go to Mayo! I would’ve died at least twice if not for Mayo Clinic! Thank you for sharing your success story with me. It helps me a lot to hear positive outcomes from such a horrible disease! Hope you continue to do great! How bad are the rejection meds? I’ve had chemo & immuno-suppressives-A LOT!!! Are the rejection meds: worse, better, or similar? Thanks again for your reply! -Alx R.

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@donb

Do you know about http://www.pscpartners.org and http://www.cholangiocarcinoma.org …both good sites….DON’T let the last site scare you….I had both psc and CCA…transplanted at Mayo AZ. 2009….if your at Mayo be sure you ask for the F.I.S.H test…. Good luck Gods speed:)

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What’s the F.I.S.H test??? Thanks for the info! Hope you are doing great still! : ) Alx R.

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@donb

Do you know about http://www.pscpartners.org and http://www.cholangiocarcinoma.org …both good sites….DON’T let the last site scare you….I had both psc and CCA…transplanted at Mayo AZ. 2009….if your at Mayo be sure you ask for the F.I.S.H test…. Good luck Gods speed:)

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diagnosis of bile duct cancer with the advanced cytologic technique of fluorescence in situ hybridization (FISH). …
http://www.mayoclinic.org/mcitems/mc2000-mc2099/mc2024-21.pdf

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@donb

Do you know about http://www.pscpartners.org and http://www.cholangiocarcinoma.org …both good sites….DON’T let the last site scare you….I had both psc and CCA…transplanted at Mayo AZ. 2009….if your at Mayo be sure you ask for the F.I.S.H test…. Good luck Gods speed:)

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Ahhhh… I understand! Thanks so much for the great sites & info! I hope to get a transplant before I get duct cancer, but, I am hungry for ALL info on possibilities and tests @ Mayo! I will definitely ask my Dr. About the F.I.S.H.-test. I am so happy that your transplant & treatment was a success! When I get a bit closer to that stage, maybe we could keep in touch and talk about it. ??? I hope you continue to feel great & enjoy life! : )

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@donb

Do you know about http://www.pscpartners.org and http://www.cholangiocarcinoma.org …both good sites….DON’T let the last site scare you….I had both psc and CCA…transplanted at Mayo AZ. 2009….if your at Mayo be sure you ask for the F.I.S.H test…. Good luck Gods speed:)

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Any advice on how the anti-reject meds may affect me? (Just from your personal point of view). I have done 2 rounds of Chemo for Colon, and many immuno-suppressives! Any similarities/ differences, with your experience,?

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@rosemarya

Susan, I, too, had PSC. My local transplant team noticed some ‘tumor markers’ in my blood tests. During ERCP they were unable to get samples for testing due to blockage. They referred me to Mayo Clinic, where my tests were negative. I was able to recieve a transplant. The time of ‘unknowing’ was very stressful. Life is great since transplant.

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I did not have any problems with my anti rejection medications. However, I had not been taking any chemo or other meds prior to my transplant. When you are listed for a transplant, you will be given access all of the information that you will need to know. Plus the doctors will explain and answer your questions in both medical and everyday language. You will also be assigned a pre-transplant coordinator who will be able to assist you and guide you.
Browse thru the Mayo Clinic website for information on transplants, PSC, medications, success stories, etc.
Remember that everybody’s body is different, and everybody’s story is different. I am hoping for a happy ending for yours.
Rosemary

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