New to this group & Newly Diagnosed w... - Blue Faery Liver ...

Blue Faery Liver Cancer

516 members244 posts

New to this group & Newly Diagnosed with HCC.

Lothbrok profile image
4 Replies

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

4 Replies
WayCas profile image
WayCasPatient

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 profile image
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 profile image
MichelleL_BlueFaeryModerator

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 profile image
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 🙏

You may also like...