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(11 replies, posted in Good News / What's Working)

This thread caught my eye because I thought the same thing when I heard that my uncle's scans had come back "stable" with no new growth.
Congratulations on your good news and extended holiday season smile

Thanks, jathy! My uncle has an intrahepatic cholangio.

Good news to report as well smile They were able to stop the bleeding. The ulcer was still oozing though so they put in a coil to stop that. He's doing very well and is being moved to the regular hospital floor tomorrow morning!

Thanks again for all the support. These bumps in the road always throw me for a bit of a loop.

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(19 replies, posted in General Discussion)

Not knowing is the worst. There is so little they know about cc compared to other cancers.

Prayers and support coming your way! hopefully you're able to update us with good news soon.

Thanks for  all of the support!

the GI specialist said that he's stable enough that surgery won't be necessary unless the ulcer re-bleeds (which would most likely occur in the next 24 hours). So crossing my fingers that it's able to heal itself.

jathy1125, I may take you up on that offer to talk. What type of cc did you have?

so sorry to hear that you had to go through that yourself, but it's reassuring to hear that they can be readily fixed. It always sounds so bad when they start discussing blood transfusions and surgery. Thanks for the good wishes!

A bit of a set-back today:

My uncle is in the hospital with a significant GI bleed. They're pretty sure he developed an ulcer and may need surgery to repair/remove the damage. He's stable and receiving transfusions.
I'm assuming that because of the extensive chemo that area is weakened and more susceptible to issues like gastric ulcers.

Haha ill pass that along!

Christmas is by far my favorite holiday, but i love the lead up to it, halloween and thanksgiving smile

My uncle is responding very well to the therapy. Were just waiting now on that all important liver.
The only issue hes been having is that the stents (spelling?) they put in dont want to stay in place. Hes already had to have emergency surgery once to replace them and their monitoring them closely now. Anyone else had this happen?

Happy fall!

Hello all. It's been a while since I've updated, but I wanted to share my uncle's most recent treatment progress. For my full introduction here's the link to my intro thread:
http://www.cholangiocarcinoma.org/punbb … p?id=10266

My uncle has an intrahepatic cholangiocarcinoma that has spread through his bile duct, but not beyond. He is receiving care at UCLA under Dr. B. (can't ever remember his full name). His team decided the best course of action would be a full liver transplant. He is on the wait list (average is 9-12 months apparently) and will undergo radiation and chemotherapy to in essense "stall" the cancer while he waits for a new liver. His doctor has told him he's in excellent shape for a transplant, so in short, we're cautiously optimistic.

This week he will be starting a radiation therapy called Neoadjuvant therapy. Has anyone had experience with this type of therapy, specifically in conjunction with a full transplant?

I'll include the link to the article we were provided describing the therapy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504373/


I really appreciate any feedback. You all were wonderful in my introduction thread smile

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(12 replies, posted in Introductions!)

randigb -I'm so glad to hear that your surgery was successful. What is Whipple Surgery? I am familiar now with adjuvant chemotherapy, but have not heard of this surgery.

marions - that's wonderful to hear! It really is fortunate that my uncle can receive treatment at UCLA. Dr. B is very optimistic about his chances with the transplant.

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(12 replies, posted in Introductions!)

Wow! thank you all for your support. I definitely came to the right place.

Marions - yes, my uncle is being placed on the transplant list and will be getting the surgery at UCLA. He is currently under the care of Dr. Busuttil. We've heard he's a "hotshot" so to speak in the liver transplant world. If anyone has had experiences with him as a patient or caregiver, please share.
My uncle is due to start chemo in a couple of weeks so once that gets underway I will most likely start a thread in general discussion to keep everyone updated. Dr. B said the wait for a liver is usually on average 6-9 months so we're hoping he stays in that time frame.

I so appreciate everyone sharing their experience. It makes me feel much better to know that there are others who are going through this same thing and can still have such an upbeat, supportive attitude.

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(12 replies, posted in Introductions!)

Thank you for your kind words!
Yes, PubMed has become my new best friend. I've been researching absolutely everything I can on my uncle's specific type of CC. There are a lot of recent articles, especially concerning transplantation. This website gave me a really good starting off point.
I feel like if I have as much information as possible, at least I have control over something.

great information! thanks

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(12 replies, posted in Introductions!)

Hello all,

Two weeks ago, my uncle was diagnosed with Intrahepatic Cholangiocarcinoma.
He was feeling ill and had been having symptoms of jaundice. The doctors initially suspected just an infection, but further tests showed a mass.
According to the oncologist, the tumor is still localized, but has formed in all of the branches of the bile duct so his only option is a full liver transplant. He'll start chemo and radiation soon in the mean time. He is currently receiving treatment at UCLA.

This is all extremely new to me. I'd never even heard of bile duct cancer until my uncle's diagnosis. I'm extremely close to him, we are a close family so this is very difficult for all of us. I'm so happy to have found a group of people to connect with who are experiencing this type of cancer (either personally or a loved one). I could use any and all of the support and experiences you may have.

Thanks for reading!