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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Liver Cancer | Last Active: Oct 2 4:33pm | Replies (219)
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@krishh

Mine is stage 4 and I have been living with it quite well for 27 months. Read my post above about my journey. I had a bad spell Jan-March this year that was the result of reaction to chemo as well as other infections, but other than that, I have basically been living with it, receiving treatment and living life. I know it won't last, but I'm doing better than what was initially suggested to me about the progression of this disease. So tell him to hang in there - I hope his progression is as slow as mine! Kris

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Replies to "Mine is stage 4 and I have been living with it quite well for 27 months...."
kimia2000 | @kimia2000 | Sep 17 5:43pm

Hi,
I was diagnosed in January 2023 with pre-hillar stage 3B cholangiocarcinoma. At Mass General Hospital, they told ne it's unresectable.
I went through 16 infusion with 3 drugs, then 30 sessions of radiation.
After several months if uncertainty and anguish, the UPMC approved ne for loving donor liver transplant.
I had a 15.30 hours successful surgery..then, to minimize the risk of recurrence, I started 6 months of capecitabine, 2000 mg, twice a day.
So far, the images and kab work shiw no sign of recurrence.
My oncologist warns ne that I have 50% chance of recurrence but Mayo data shows %30 chance.
My tumor was 3 cm and no spread to lymph nodes or other organs.
Post-surgey Pathology showed that the tumor was completely dead with no live cancer cell, proving that pre-tranplant treatment was effective.
I had no major issue during the chemo and the tumor shrank a bit during the treatment.
Wish every other patient the success I have had so far.
Thanks
Hassan, 67 years old in CT

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