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Have you been diagnosed with fibrolamellar??? Do you know someone who has?
Looking for anyone diagnosed or knows someone who has been |
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| Hi Tuck, Thank you for making this site. I would like to make you all aware of a golf outing I am holding next year to benefit FHC research. I will keep everyone posted with specifics as the dates get finalized. Keep up the good work, keep fighting! |
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| Hi Tucker! Good Idea we need as much info as we can get! If I can ever help let me know! |
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| Your site is awesome!!!!! The info you provide is invaluable!!!! Thank you!!!! Susie |
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| After reading your story I have to tell you we have alot in common. I was also diagnosed in August 2008 a few days shy of my 29th birthday! |
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| Thank you for starting this foundation. My husband has been battling FHC since 2006 (33 yrs old). He underwent a liver resection with a modified whipple, which means they took a little bit of everything and then pieced it all back together. He also has been on Nexavar but now is off since it had stopped working after about a year. He has about 18 tumors all over his lymph system and just this year, the cancer spread to his lungs and back to his liver. We are looking at further radiation treatment using Cyberknife for some of the more painful and threatening tumors. We have 18 month old twins that bring much joy to our days no matter what is going on. Keep up the fight! |
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| Audrey - what is your email address? |
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| Hi! My daughter was diagnosed in Oct. 2007 when she was 15. We were going to go to NY,Philly, or Tx whoever excepted her first. It was Houston, Tx-MD Anderson. Nothing helped her and now we are hoping to do liver resection/transplant. Would love to get more info...Just found this site....LOVE IT...was going to start a foundation myself for FLC as couldnt find any...and now here we are. |
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Hi
My son was diagnosed in 2003. He had a liver re-section to remove part of the tumour, then chemo, followed by another re-section and more chemo. In total he has had around 7/8ths removed. The cancer came back to other parts and in 2005 he was operated on again followed by chemo but since then we are so fortunate because he has been clear. His last scan was a couple of weeks ago. What you are doing is wonderful and I am so pleased that more people are becoming aware of this type of cancer, as it is fairly rare. We are based near London, England and would like to join the cause. |
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Hi Karenne-
What type of chemo did they give you? |
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| I had surgery to take out a 12cm tumour and the left half of my liver and resect the right half, which had an FNH which was 4.5cm, the results were Fibrolamellar Carcinoma. I sometimes think what I am feeling is not right and I dont know who to speak to as I have not read too much about this disease. My first scan at 3 months was clear, but I have been sick lately and recent bloodwork does not look too good. Reading stuff on your site makes me know I am not alone. Thanks :) |
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