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27 year old husband diagnosed with fibrolamellar hepatocellular carcinoma
We found out a few weeks ago that my husband has fibrolamellar hepatocellular carcinoma. They are starting him on Nexavar this week and we have an appointment with Sloan in a week and a half. I was just wondering what questions we should ask when we go or options we have. They have not mentioned anything about surgery,…
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Anyone in clinical trial with Nexavar aka Sorafenib and Temsirolimus aka Torisel?
My husband just started this trial. He is in stage 4 HCC (no hepatitis, no cirrhosis). If you are a participant, let's connect. My email: dvmendoza2012@gmail.com I have talked to one participant already who seems to be responding well. They told him he had weeks to live and he's been in the trial for 2 years now. He's 77…
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PET scan is very scary
My husband just had a PET (CT/PT), scan. I put the scan on my computer and took a look. It's not hard to see the areas that are glowing bright yellow/white as compared to the other colors. He looks like someone lit him up for halloween with candles inside. I'm afraid this means his cancer has spread everywhere. Multiple…
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Treatment options
Hi. I am new to this board, and I am seeking advice. My brother was just diagnosed with primary liver cancer less than two weeks ago. He is in his early 60s and is otherwise healthy. He has been told that he has at least one large tumor that is greater than 5 cm, and there is also portal vein involvement. Last Friday, he…
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Ampllary to Liver
In May of 2011 doctors found a tumor on the neck of my bile duct. In June I went through a Whipple procedure that removed the neck of my Pancreas, 1/3 of my stomach and my gall bladder. After the procedure I was on Gemzar for 6 months and then had a CAT scan, MRI and biopsy. The cancer is now in my liver. The tests showed…
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My first holiday without my sweetheart...
Well, I just spent my first Valentine's Day without my sweet husband... I guess I survived it ok. First thing was to visit my husband's resting place and give him some more flowers since it was a few weeks ago since I was there last. then I signed off on his car and went to the first Liver Cancer Support Group. Sadly I was…
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any one with HCC (primary) No Cirrhosis and No Hepatitis?
My husband has this and the doctors say it is uncommon within the HCC diagnosis. If anyone else has this type, please write me and let me know what treatments you are participating in or have participated in. One doctor says we just try Nexavar first and then consider other treatments when/if Nexavar doesn't work. Another…
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Liver Cancer Support Group at CPMC
Since my husband's diagnosis in October 2009 and starting treatment at California Pacific Medical Center they have finally started a Liver Cancer Support Group. The first meeting is this Tuesday, February 14,2012. That is sadly the one month anniversary of my husband's passing. We had hoped to participate in it this month.…
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Any survivors willing to call me? Please Please help me save my husband
My husband has been diagnosed with primary, traditional HCC (no cirrhosis), stage 4. The CT scan indicates he has numerous tumors of varying sizes throughout his liver. There is one tumor on his abdominal wall so they consider this spread. They have told us that he should take nexavar and/or join a trial. Those are the…
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2 years since diagnosis
Hello everyone. When Ed was first diagnosed I searched for information and hoped that what the doctors were saying did not have to be true. I found so much hope here. Ed was given 2-6 months to live. He asked every time he went to see a doctor hoping to get a different answer but only one doctor said to him that he…
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Liver Cancer with unknown primary
Hi Everyone, I am wondering if anyone can give me some insight about liver cancer mets and an unknown primary. My friend is 39 years old and has always been healthy. She has a 5cm tumour in the liver but they can't find the primary. She is not a drinker, no history of hep. or liver disease. Her CT was clean and so was her…
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45 yr. old Husband diagnosed with traditional HCC -Stage 4
Hi all. My husband had one tumor removed in 2010 which was believed to be the only one. They told us that this was the fibrolamellar type of cancer with very good prognosis. We had a couple of follow ups and the scans came back clean. We then lost our health insurance coverage. Now, his CT scan shows many tumors of varying…