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 🙏🏻❤️
Written by
liverlover0
Patient
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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.
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.
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.
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In Memory of Dave
