Get Help & Support

This page contains resources that we have found helpful. If you have others, please let us know.

During the course of a health crisis, family and friends are looking for frequent updates.  We discovered two websites, www.carepages.org and www.caringbridge.org, that provide a forum for updates on the patient’s condition and a platform for supportive comments from site visitors.

For general questions about fibrolamellar check out our FAQ section.

Other Fibrolamellar Websites

• facebook.com -  "Fibrolamellars of the World Unite!"
  A forum for fibrolamellar patients, families and physicians treating them. 
• facebook.com - "The Fibrolamellar Cancer Foundation" facebook group
• deliveracure.org
  Established by a boy with fibrolamellar. Good blog.
• caitlynsfight.org
  Established by Caitlyn's father. Caitlyn had fibrolamellar. Their mission is to provide emotional support and financial assistance to families of children diagnosed with rare forms of pediatric cancer.
• checkondavid.com/moreInfo.html
  Older website about a boy with fibrolamellar.  It is his story, very informative but no longer an actively maintained site.
  

Young Adult Cancer Websites

• crazysexycancer.org - excellent interactive website for young adults living with cancer
• PlanetCancer.org - social networking, retreats and forums
• Livestrong.org - Lance Armstrong Foundation
  
• i2y.org  -  advocacy, activities and networking
• StandUpToCancer.org - fundraising for research
• CancerCharter.org - the patient's bill of rights
• FirstDescents.org - challenging outdoor adventures for young adults with cancer
• ImermanAngels.org - one-on-one support
• FertileHope.org - reproductive information for cancer patients

Recommended Reading

     Crazy Sexy Cancer Tips
     Author Kris Carr
     Kris's writing provided us with wonderful wisdom and humor.

     Crazy Sexy Cancer Survivors: More Rebellion And Fire For Your Healing Journey
     Author Kris Carr

     Emperor of All Maladies: A Biography of Cancer
     Author Siddhartha Mukherjee - NY Times Book Review Top 10 for 2010

     Glimpses of Heaven: True Stories of Hope and Peace at the End of Life's Journey
      Author Trudy Harris

     What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope
     Edited by Julie K. Silver, M.D.

     There’s No Place Like HOPE
     A Guide to Beating Cancer in Mind-Sized Bites
     by Vickie Girard

Documentaries

     Crazy Sexy Cancer
     Written, directed and produced by Kris Carr (fabulous)

Definitions and Descriptions of Fibrolamellar

1. http://emedicine.medscape.com/article/278354-overview
2. http://www.usclivercancer.org/livercanceroverview.html (bottom of page)
3. http://www.medicinenet.com/liver_cancer/page15.htm
4. http://rarediseases.info.nih.gov/GARD/Condition/9396/Hepatocellular_carcinoma_fibrolamellar_variant.aspx/Showall

Articles on Fibrolamellar

1. "Clinicopathologic features and survival in fibrolamellar carcinoma: comparison with conventional  hepatocellular carcinoma with and without cirrhosis",  http://www.nature.com/modpathol/journal/v18/n11/full/3800449a.html
2. "Fibrolamellar carcinoma of the liver:  An immunohistochemical study of nineteen cases and a review of the literature", http://www.sciencedirect.com/science/article/pii/S0046817788802612 (only a preview…have to purchase to read the entire thing)
3. "Guidelines for the Diagnosis of Hepatocellar Carcinoma (HCC) in Adults",  http://gut.bmj.com/content/52/suppl_3/iii1.long
4. "Phase II Trial of Systemic Continuous Fluorouracil and Subcutaneous Recombinant Interferon Alfa-2b for Treatment of Hepatocellular Carcinoma", http://jco.ascopubs.org/content/21/3/421.full

Healthy Cooking

     Crazy Sexy Cancer:
          Eat Your Veggies, Ignite Your Spark And Live Life Like You Mean It
     Author Kris Carr

     The Cancer Fighting Kitchen
     Authors Rebecca Katz & Mat Edelson

     One Bite At A Time: Nourishing Recipes for Cancer Survivors And Their Families
     Author Rebecca Katz

Header photos:  Fibrolamellar patients with their families