Providing Crucial ​Insights
​to Fibrolamellar Patients.

Introduction

These surveys were created with the goal of sharing important information with a very select group of extraordinary patients and families. Robert Stockwell was diagnosed with Fibrolamellar Hepatocellular Carcinoma (FHC) in January 2014. Since then, our family has spent countless hours in hospitals speaking with doctors and educating ourselves on topics like treatment options, diet choices, managing emotions, and determining which alternative therapies we should try. The list seemed endless.

BETTER TOGETHER


​​We hope that you, as a patient or caregiver, will spend 15-20 minutes on this survey so that we can all make this difficult journey easier (future visits only require a few minutes). By taking this survey and providing information about your chemotherapy regimens, clinical trial enrollment, genetic testing, diet, supplements, and alternative treatments, we hope to find commonalities in those that are showing positive results.

Three Surveys, One Goal

Current Fighters of the Disease

Fighters in Complete Remission

Loved Ones Who Have Passed

We want to offer everyone the opportunity to be heard and the questions are unique for each group. Participating in this survey is 100% voluntary and takes only 15 minutes to complete. If the shared information uncovers more questions and leads to more productive therapies, that’s time well spent.

  • 11Jan

    We are very pleased to announce that 20 participants have completed the survey thus far. We would like to thank

    j

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A Few Things to Note

None of the shared information is meant to be taken as medical advice. It is only the collection of data to share with the community on a timely basis. The anonymous survey responses will only be seen by website administrators. When raw survey responses are requested by a physician, scientist, or individual, the unique code you provide will automatically be converted to a sequential number (User 1, User 2, User 3 …). This data can be requested by clicking here.

If you are a current fighter or are in remission, it is imperative that you repeat the survey when any of the following happens.

  • ​​Receive a new scan result
  • ​Have a recurrence
  • ​Have a resection(s)
  • ​Receive a transplant
  • ​Undergo an interventional radiology procedure
  • ​Start or change a chemotherapy regimen
  • ​Have genetic testing performed
  • ​Start a clinical trial
  • ​Change your diet
  • ​Start or stop taking natural supplements and/or remedies
  • ​Change your exercise habits
  • ​Start or change alternative therapies

Ready to ​Take the Survey?

Online Safety

Disclaimer


THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for general informational purposes only and does not address individual circumstances. It is not a substitute for professional medical advice, diagnosis or treatment and should not be relied on to make decisions about your health. Never ignore professional medical advice in seeking treatment because of something you have read on the Fibro Survey Site. If you think you may have a medical emergency, immediately call your doctor or dial 911.