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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?
Liver Cancer | Last Active: Oct 2 4:33pm | Replies (219)Comment receiving replies
Hi there. I am wondering if anyone else has been diagnosed with this cancer called cholangiocarcinomas? It's very rare and found usually within 1st 2 years of lif. Well, I turn 39 today.
If your familiar with runningback Walter Payton from the Chicago bears then you may know that he sadly passed away in 1999 from this disease.
I'm having a robotic surgery done on February 18th. I'm scarred because it's not a surgery that is done often. I know I have the best surgeon in this field that is confident enough to do this type of surgery but the risks stay the same. I'd Like to know if anyone else has been diagnosed with this or knows someone that has?? Please tell me your story!!!!! I appreciate any advice or guidance you have to offer.
Thank you!
Kristin
Replies to "Hi there. I am wondering if anyone else has been diagnosed with this cancer called cholangiocarcinomas?..."
Hello ms Kristen
i was diagnosed in 2017 with CC, Mine was bile duct at the split to the liver. i had to go thru mayo protocol chemo , radiation and brachey therapy. I was put on the inactive transplant list. did chemo 16 months went thru staging . was negative for mets. was activated on transplant . I was transplanted september 19 2018 . My Surgeon was Dr Heimback . i am sure i spelt the name wrong. My transplant went great and my liver is doing great. i am truly Blessed for the Gift Of Life . I am from south Texas. Dr Rizvi was my Hep Dr. if there is any thing i can help you with please ask. there is alot of good people on this chat. Have a blessed day!
Hey Kristin! I just turned 54 but was diagnosed with CC this past September. I was stage IIIb w/a 9” tumor inside my liver smack dab in the middle so not operable until it shrinks. Couple of months of Gem/Cis chemo still not shrunk. So I did qualify for the targeted therapy since there is a FGFR2 mutation and started Pemazyre 1 week ago (nightly pill, kinda like “at home” chemo) and waiting for the 2nd cycle (4 weeks) for a rescan MRI to see if it has shrunk. It’s like a waiting game w/hide n’ seek. Crazy for us, huh? I’m hopeful it has shrunk bcz Dr. Smoot up at Mayo will be cutting my liver down to pull this dang thing out. Keep us up to date on your progress. We are all pretty much wanting to have this surgically removed bcz better chance to keep it from spreading so you are ahead of the game! Praying for your peace and recovery!
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Hi Kristen. You'll notice that I moved your message to this existing discussion group in the Cancer group about cholangiocarcinoma. I did this so you can connect with other members who have experience with bile duct cancer like @clarke6 @mngardenaddict @kjrita @alcabrer @krishh @jnc1955 @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 and others. Click VIEW & REPLY to scroll through past posts and learn more about the stories of others.
Kristen, I'm glad that you have full confidence in your surgeon as you prepare for surgery. What are your main concerns about surgery? What questions would you like to ask?