Tumor is AFP producing – maybe have combined HCC and ICC??
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Hi Christine,
I too had intrahepatic primary cholangiocarcinoma with high levels of afp.
When I was diagnosed in May last year my account levels were 8000. I had 8 lesions on my liver. I started on Folfrinox for 7 cycles, after that my afp went down to 2. I had a ct pet scan that came out normal and all the lesions either shrank or disappear. They performed a laparotomy for a partial liver resection and removed all the tumors in necrosis that were in my liver plus my gallbladder. After that I did 12 more cycles of Gemzar and cisplatin. In January all my blood test and ct pet, magnetic 3D resonance came out all normal. A month later in February my Afp started to rise again, did new exams ( images ) and no lesions present. Now the doctors are analyzing why my ago is rising even tho I have no lesions !
I hope your treatment works for you. Keep positive and keep on going
Regards,
Alex
My high AFP numbers have always been “curious” to my ONC and recently they have really shot up
Finally have someone admitting that maybe I have HCC instead of ICC or, more likely, have a combination of both.I did some searching on the discussion topics and found a few mentions of this possibility from a few years back.
Anyone else out there have this issue? Did you treat it any differently?
I am starting FULFIRI on Monday after Gem/Cis, Gem/Ox and Xeloda didn’t slow things down.
Thanks!
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