Sad in Texas
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Hi Ellen,
Sorry to hear about your Dad… I can very much relate to you, my Dad just turn 81 in December 09 and was diagnosed with CC tumour in the intra-hepatic (in the liver) bile duct, at the end of January 2010.
What I can tell you about our situation is that since the initial diagnosis they’ve inserted a plastic stent twice, due to it blocking up. Both times it took awhile for the jaundice and fever to go away, and for the levels to get down to a safe, but not normal level. When bile is not being drained from the body properly it causes the liver to swell, and the bilirubin to rise, this is expected and why stenting is so important.
We live in Ontario, Canada so our medical system is different here than in the states. However, initially we started at a local cancer clinic near where we live for all of this above and then got a referral for second opinion at one of the top Cancer centres in Toronto, Ontario, they see about 100-200 cases per year.
So, I agree with Lainy and Lalupes push for a second opinion, but at a larger Cancer Centre that has seen and dealt with CC more than once before such as Mayo Clinic. This is a rare form of cancer that not many have ever had to deal with.
From what I understand the plastic stents are a temporary measure, until surgery is ruled out. Surgery is not an option for my Dad because of other medical issues (reduced kidney function, high blood pressure, stable angina etc.) the surgery could kill him. So knowing this, a metal stent was inserted, which is more permanent and much bigger and better than the plastic ones. Chemo and radiation are still options for my Dad, which I think we will know more about next week as a follow-up to a recent CT scan.
Could it be that it’s just not a suitable time to do surgery on your Dad, have they said no to surgery, chemo and radiation completely, if so is it because they are limited to what they can do at this particular hospital?
Could you please give more details about your Dad’s situation ie: which bile duct is blocked, do they feel it’s a fast or slow growing tumour, what imaging have they done and what the results are, has it metastasized etc. This would help us have more incite and provide more info to you.
Be positive,
Dianne
I’d like to join Lainy in extending a very BIG welcome to you, Ellen.
My sister’s bilirubin was very high but it came down & she’s been on chemo for some time now. If your dad’s stent is working well, have they given any idea of whether/when they expect an improvement in his bili levels? I hope all goes well & that you get more information. I know from personal experience what pain insufficient information causes so my heart goes out to you.
I hope you are able to get more info from a 2nd opinion.
My best to you & your family.
Julia
Lainy -Thank you so, so much for your reply. I will talk with my parents and see what they think about the second opinion. My dad is about quality of life just as your husband is. I am sorry for you and your family as well. Thank you!
Dearest Ellen, welcome to our wonderful family, although we are so sorry you had to find us. The only thing I can suggest at this point is a second opinion. My husband, who has been fighting this for 4 1/2 years is now almost 78 and he has chosen to not do much IF it gets too bad, as he chooses quality of life, but that is such an individual and personal decision. Not sure where you are in TX but in Houston is one of the best hospitals for CC, MD Anderson. You can send them dad’s records and they will tell you if they can offer any other treatment. Read up as much as you can here so that you know what you are dealing with as to be knowledgeable is to be the best advocate. Please keep us posted as to how your dad is doing. I am sure you will be getting more suggestions from our loving family.
Hello everyone. My name is Ellen and my father was just diagnosed with cholangiocarcinoma. We have been over some major hurdles just to learn today that the stent that was placed a few weeks ago to drain bile is working fine. That sounds like good news but what I guess this means is that the bile ducts running throughout the liver tissue are blocking off. The Dr said that there is nothing else that they can do. They cannot do chemo because his bilirubin is high and it would finish the liver off. Are we at a dead end here? Has anyone heard of this and learned of a way to treat?
My dad turned 80 on March 18th – he was vibrant and more active than most of the 30 year olds I know. He hasn’t ever had a surgery in his life, and has only been hospitilaized one time. Now he is very, very sick and frail. Thank you for listening to my brief intro. My heart goes out to all of you. Any info would be greatly appreciated!
~ Thank you~
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