FAQ

Disclaimer: The answers below are from our own research and experience, and in no way represent proven scientific fact. Also, we don't have many answers but feel the questions can be good ones to ask your doctors.

What therapies are there for Fibrolamellar?

Some treatment options - Our greatest knowledge comes from Tucker's experience and our own research

1. Surgery to "debulk" the tumor and remove any disease visible to the eye of the surgeon
2. Tucker's Chemotherapy (although not a cure for FHC, certain chemotherapies on certain patients, can "reset the clock". Note: these chemos are in addition to the drugs Tucker was already taking for side effects and the blood clot)
   1. Nexavar
   2. Nexavar + Doxorrubicin
   3. Multi drug regimen
      1. 5FU
      2. Avastin
      3. Oxaliplatin
      4. Gemcitabine
   4. Expanded Multi drug regimen (same as above with increased dosage, change of timing of doses, and addition of Thalidomide, and eventually Tarceva)
      1. 5FU (changed to xeloda)
      2. Avastin
      3. Oxaliplatin
      4. Gemcitabine
      5. Thalidomide
      6. Tarceva
   5. Abraxane And Celebrex
   6. Abraxane and Gemcitabine
   7. Abraxane, Avastin, Thalidomide
3. We have heard of another FHC case where Interferon has stopped the growth of the disease
4. Chemoembollization (A chemo wash of the abdominal cavity). This had been suggested at one point, but Tucker never had it. We have heard of another case of FHC where it was used.
   

What doctors are familiar with Fibrolamellar?

Below, we have listed some of the doctors we know about – surgeons, oncologists, radiologists - but there are many others.  Beyond these names we suggest you contact one of the comprehensive cancer centers in the United States.  Doctors are listed by region, by hospital and then alphabetically.

*indicates we consulted with them on Tucker's specific case

New York Metropolitan area

Ghassan Abou-Alfa, M.D., Asst. Professor of Medicine, Gastrointestinal Oncology, Memorial Sloan Kettering Cancer Center, NYC, NY*

Ronald DeMatteo, M.D., Vice Chair, Department of Surgery; Head, Division of General Surgical Oncology, Memorial Sloan Kettering Cancer Center, New York, NY*

Michael P. LaQuaglia, MD, FACS, FRCS, Chief, Pediatric Surgical Service, Joseph H. Burchenal Chair in Pediatrics, Memorial Sloan-Kettering Cancer Center, New York, NY*

Mid-Atlantic/Southeast

Elliot K. Fishman, M.D., Professor of Oncology, Radiology and Radiological Science, Johns Hopkins Hospital; Director, Diagnostic Imaging and Body CT, Johns Hopkins University School of Medicine, Baltimore, MD*

Jeff Geschwind, M.D., Professor of Radiology, Surgery and Oncology; Director, Vascular and Interventional Radiology, Johns Hopkins University, Baltimore, MD*

William H. Westra, M.D., Professor of Pathology, Oncology, Otolaryngology; Co-Director, Division of Surgical Pathology, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University School of Medicine, Baltimore, MD*

Howard Katzenstein, M.D., Associate Professor of Pediatrics, Division of Hematology/Oncology, Emory University; Director, Clinical Research and Experimental Therapy Program, Aflac Cancer Center and Blood Disorders Service, Atlanta, GA*

Perry Shen, M.D., Associate Professor, General Surgery, Comprehensive Cancer Center, Wake Forest Baptist Medical Center, Winston-Salem, NC.

Melanie B. Thomas, M.D., MS., Associate Director of Clinical Investigations, Associate Professor, Grace E. DeWolff Chair in Medical Oncology, Medical University of South Carolina, Hollings Cancer Center, Charleston, SC*

New England

Charles Fuchs, M.D., M.P.H., Associate Professor, Department of Medicine, Harvard Medical School, Associate Professor of Medicine, Department of Medical Oncology; Director, Gastrointestinal Malignancy Program, Dana-Farber Cancer Institute, Boston, MA*

Andrew Zhu, M.D., Ph.D., Assistant Professor, Department of Medicine, Harvard Medical School; Asst. Physician, Hematology/Oncology and Director of Liver Cancer Research at Massachusetts General Hospital Cancer Center, Boston, MA*

Midwest

David M. Nagorney, M.D., Gastroenterologic and General Surgery, Mayo Clinic, Rochester, Minnesota
 
Northwest

William P. Harris, M.D. Acting Instructor, Medical Oncology, Seattle Cancer Center, School of Medicine, Division of Oncology, Seattle, Washington.

Sam H. Whiting, MD. Ph.D., specializes in Hepatocellular Carcinoma, Liver Cancer, Liver Metastasis at Seattle Cancer Care Alliance, Seattle, Washington.

Raymond S. Yeung, M.D, FACS, Surgical oncology multidisciplinary therapy for gastrointestinal malignancies hepato-biliary, pancreas, colorectum, breast cancer, melanoma and endocrine neoplasia scintigraphic mapping, laparoscopic radiofrequency ablation at University of Washington Medical Center, Seattle, Washington. 

Southwest

Ahmed O. Kaseb, M.D., Department of Gastrointestinal Medical Oncology, Assistant Professor and Director, Hepatocellular Carcinoma Program, The University of Texas M.D. Anderson Cancer Center, Houston, Texas.

Jean-Nicolas Vauthey, M.D., Professor of Surgery and Chief of the Liver Service, Department of Surgical Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, Texas.

Yehuda Z. Patt, M.D., Professor of Medicine, Chief of GI Oncology, Research University of New Mexico Canter Center, Albuquerque, New Mexico*

West

Alan P Venook, M.D., Professor of Clinical Medicine, Division of Medical Oncology, University of California, San Francisco, CA*
 

What are the causes of Fibrolamellar?

It is not presently known, although there is some evidence pointing to an environmental link.

How aggressive should follow-up CT scans be, weighing the balance between early diagnosis of recurring disease and radiation exposure to the scans?  

A  CT scan has about 500x the radiation of an xray. MRI's are magnetic and have no known adverse effects. Check with you doctor to see which scan is best for you.