New to this group & Newly Diagnosed with HCC.

[Lothbrok]

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,

Be well,

Cheers

[WayCas Patient]

First, wish you the best on your treatment. Sounds like you are a good candidate for a liver transplant. It was never an option for me due to Metastasis and portal vein thrombosis. I had Nexavar first and it was brutal. Then Y90 with great success and followed with 53 rounds of Opdivo. I had 1 recurrence which required ablation. There was some rib pain for a couple of days. The procedure was successful and no more recurrence.

Prayers for you. Wayne

[Lothbrok in reply to WayCas]

Thank you for the response and sharing your experiences with me. I am realizing as I still comprehend this cancer diagnosis there is much to learn ; thus community is rich with stories. I wish you well in your journey…cheers

[MichelleL_BlueFaery]

Hello and welcome to the Blue Faery community 💙 I hope your RFA goes well this Friday and that you can get a liver transplant ASAP.

Warm wishes🙏💫

[Lothbrok in reply to MichelleL_BlueFaery]

Thank you for the warm wishes…I am excited about this procedure and look forward to some relief.

Transplants in Canada are 1in 3 at the moment even with high priority on list. I don’t lose hope!

Thank you 🙏