I just wanted to say hello to the group.
My bio describes what I have been going through. My Budd Chiari Syndrome diagnosis really helped understand my reason for suffering with cirrhosis and decompensated liver. I am not a drinker and have been thoroughly tested for genetic disorders. When I was 19 years old a doctor told me I have a very large liver. (nothing came of it!)
When I had the TIPS installed last April the Interventional Radiologist (IVR) said my liver is 13cm versus 8cm (he had to join two shunts together to make it work).
I was just diagnosed with HCC; multifocal with 3 tumors on right lobe (2.5cm, 2.1cm, & 1cm). Lung CT was clear of any spread. My medical case was turned down by our local Cross Cancer Institute and therefore not under the care of a oncologist. They decided that I maybe cured by a transplant if my HCC doesn’t spread or worsen. So members of my liver team will provide & monitor my treatment.
This Friday I will receive RFA by my IVR to burn the two larger tumors. My hepatologist will also prescribe me Levatinhib, likely 12mg. I am on the transplant list and hoping to get a liver ASAP. MELD score bumped up to 24 from 15 because of cancer and it’s aggressive nature (No tumors june 2022 on last US). I get ultra sounds every 6m for cancer screening.
I would like to know more about other peoples experiences with Levatinhib. What was it like? I read it can be harsh like the original target therapy med Sorafenib.
Anyone experience radio frequency ablation? What was recovery like? Successful on neutralizing tumor growth?
I look forward to hearing actual people’s experiences with treatment and HCC,