Diagnosed in August 2004 at 31 years old; passed away May 2013
July 8, 2004, I woke up with severe abdominal pains and later that morning saw a doctor at the hospital where I worked. Dr. Edge did x-rays and scans. About an hour later he told me he was admitting me because he found a large mass on my liver. They wanted to biopsy the mass but my mother thought better of that. I was referred to Dr. Steve Bynon at the Kirklin Clinic in Birmingham, AL. I was told that the mass needed to be removed and that it could possibly be an adnoma or possibly a malignant mass. I was in danger of the mass rupturing, so it had to come out.
In August 2004, I had a partial liver resection at UAB Hospital in Birmingham, Alabama. My surgeon, Dr. Steve Bynon, said the surgery should last about 2 1/2 hours and it ended up lasting 7 hours and 45 minutes. Because of the way my blood vessels were formed at birth, he had to reconstruct my blood vessels. I was literally a text book case he said. I was in SICU for about 3 days. I had surgery on a Thursday and went home the following Thursday. It was then that I was told the mass was Fibrolamellar Hepatocellular Carcinoma. The doctor told me that there were no treatments to be done and that surgery was the cure.
Dr. Bynon told me there was a 70% chance of the cancer coming back within the first year and that the survival rate after diagnosis was 5 years. He also told me that I would be monitored by scans every 3 months for the first year and then every 6 months thereafter.
February 2006, a para-esophageal mass was found. I started treatments of 5FU and Interfuron for almost 7 months.
May 2007, I had radiation to the para-esopageal mass.
June 2007 – November 2007, I started treatments of Camptosar and Vincristine until November 2007.
September 2008, my oncologist wanted me to start Nexavar, however, I declined.
March 2009, I moved back to Birmingham, AL. and found a new oncologist.
November 2009, I had 4 treatments of CyberKnife.
December 2010, I hesitantly started Nexavar and ended up in the ER several times and the hospital twice. I stopped taking this in May 2011.
November 2011, I started Camptosar and 5FU. As of Spring 2012, I am still doing this treatment every 2 weeks.
March 1, 2012, I had surgery to remove an ulcerated mass in my colon, but this had nothing to do with Fibrolamellar.
May 16, 2012, I was admitted to hospital with difficulty breathing, shortness of breath. They removed 2 liters of fluid from my right lung.
Along with several other FHC patients, I am currently being treated by Dr. Kaseb at MD Anderson in Houston, Texas. He has recommended that I start Avastin, however, I have not yet started this treatment because of the recent colon surgery I had shortly after he suggested it. Hopefully I’ll be able to start it soon.
When I was diagnosed at 31 years old, I had several doctors tell me I had 2-3 months to live. One doctor told me I might only have a year. In August 2012, I will celebrate 8 years of living since my cancer diagnosis.
I am looking forward to celebrating my 40th birthday this December 2012 !
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Kelly did celebrate her 40th birthday but, sadly, passed away May 2013.