Fibrolamellor disease

[liverlover0]

Hello,

I had a tumor rupture in Oct 2021 and then was diagnosed with HCC. Scans first clear, then in Jan 2022 found liver reoccurrence and mets to stomach lining. Started immunotherapy, at 3 month scan and was told liver and upper stomach stable and lower tumors had increased. At this scan it was mentioned for the very first time that I have fibrolamellor disease. They now want to change treatment plans.

Curious if anyone has fibrolamellor disease as I understand it’s rare or had success with any specific treatment or trial after immunotherapy.

Thank you for any advise and praying for all my fellow liver warriors and caregivers 🙏🏻❤️

[spazure Caregiver]

Hello and thanks for posting!

fibrolamellor disease is something I’m unfamiliar with, unfortunately. Hopefully someone else here has some info to help you out.

[AndreaWilson_Founder Partner Editor Caregiver]

Do you have fibrolamellar HCC? It is different from the more common HCC. And often more treatable. Please email me. I know a doctor who specializes in this disease. He saved his young daughter's life.

~Andrea

[e-mail]

[liverlover0 Patient in reply to AndreaWilson_Founder]

Hi Andrea,

Thank you for your reply. I appreciate your offer. My dr at moffit said I had fibrolamellor disease from pathology. I have come to md anderson for a second opinion and they are saying my pathology does not show fibrolamellor 🤷🏼‍♀️ It’s been confusing but since the Dr at moffit never mentioned it prior to the last appointment I’m wondering if he was incorrect. I am inclined to lean on the diagnosis of HCC from MDA. But if something were to change, I would love to have the name of the Dr.

Thanks again for your reply!

[AndreaWilson_Founder Partner Editor Caregiver in reply to liverlover0]

Have you seen the pathology report? Has the tissue been examined by another pathologist? (versus the report being sent over) Let me know if you need anything.