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(4 replies, posted in Introductions!)

Thanks to all of you for your advice and support! We met with Dad's gastro doctor and heart doctor yesterday at Mayo. The gastro doctor just gave an overview of treatments - said the oncologist would tell us more on Friday. When I mentioned Photo Dynamic Therapy (PDT), the doctor said it is a distinct possibility. Additionally, we learned that Dad's cancer is extrahepatic and that the last MRI showed that the organs are clear.

To clarify...Dad's heart attack occurred following the ERCP because the docs in Florida nicked him and he bled internally and they didn't know it until they went back in (post heart attack) to repair. He was in perfect health before all of this.

Dad's cardiologist met wit us and said that Dad could most likely withstand chemo and radiation drugs, but I hadn't thought of some of the things you mentioned here. After reading about the awful side effects and potential vascular problems with chemo, I'm more intrigued by the PDT and other possibilities.

I'll let you know what happens after Mom & Dad meet with the oncologist. As of now, my brother is going with them to the appointment and then as a family we'll decide how to proceed.

We are a faith-filled family and have much hope because we believe that this diagnosis has to be EARLY since none of the organs are involved. True?

Thanks again for everything.

God Bless!
Suzanne

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(2 replies, posted in Introductions!)

I am so sorry for your loss! Take good care of yourself and your dad now. Do what you can to keep her memory alive for yourself, your sister, and the grandchildren.

Suzanne

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(4 replies, posted in Introductions!)

Hi! My 74 year-old dad was diagnosed with cholangiocarcinoma late last week. Our story is long, but when he presented with symptoms (itchy, janundice, etc) in March while wintering in Florida he also suffered a heart attack following the stent placement via an ERCP. We chartered Mayo's MedAir and took him "home" (they're from Northern Iowa).

After several ERCPs where they have replaced the stents and done the cancer tests (including stainings and brushings) at Mayo they were unable to find the reason for the stricture...until last week.

The doctors said that due to the condition of Dad's heart (he needs triple by-pass surgery) that he's not a candidate for surgery. We have an appointment with the oncologist later this month and I have so many questions!!!!

The surgeon and gastro doc at Mayo indicated that most with cholangiocarcinoma live just 18 months or so. True?

If Dad's cancer can only be found via the brushings/stainings, is it early? The MRI showed nothing in any of the organs, etc. Is it contained to just the bile duct? Have we burned thru 5 of the 18 months that Dad may have left? Where will the cancer go next? What is the balance between quality of life and extending life regarding chemo and radiation? Do the radiation seeds work in this instance?

My family and I are experiencing the feelings of shock and denial now. We've gone all these months without the docs being able to FIND the cancer to a timeline of 18 months. How can this be?

I'm grateful to find this website and a means of support. Thank you and I look forward to learning from all of you!

Suzanne