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reaching out

Posts: 3
Joined: Sep 2009

this is my first post and am hoping to get some help with questions i have, my husband has HCC, w/hep c and cirrhosis of the liver, he has had 2 chemoembolizations and takes nexavar. He is currently not taking nexavar to terrible side effects, but will begin on a lower dose next week. He just had his MRI follow up with blood work and I spoke with the radioligst he said everything looked great and no need for another embolization, which is wonderful news. His MRI showed a lymph node continues to get larger and his blood work showed his AFP marker had more than tripled since the last blood work last month, but he said that was out of his field and he could not comment on that. My husbands see's the transplant team here in orlando,which is a great group of doctors, but he is not a candidate for a transplant an sometimes i feel we sorta get pushed to the side because of this. I was wondering if my husband should be seeing any other specialist, i just worry about the cancer spreading beyon the lymph nodes and is nexavar the only treatment he should have for the invasion of his lymph nodes or should he be seeing an ononcoligist, he doesnt see one at this time.

Tina Blondek's picture
Tina Blondek
Posts: 1566
Joined: Nov 2009

Hello Sherry and Rick
Welcome to this discussion board. I was a caregiver for my dad. He passed away in March from ec with mets to the liver. Your gut feeling is correct. Yes, he should be seeing an oncologist. Get a 2nd opinion, and get it fast! No time to waste. You are in Florida, there are plenty of great places to go for cancer treatment. Mayo Clinic is just one of them. Go to a cancer specialist that deals with liver cancer. I know you will receive other replies. I am praying for you both. Ask a lot of questions, get answers. Be the squeaky wheel. Start a journal, you will need to and enjoy to go back and check things.
Tina in Va

Pennymac02's picture
Posts: 336
Joined: Aug 2010

My husband got diagnosed with HCC in July, he also has Hep C and cirrosis, and we live in Florida, as well. Call the Mayo in Jacksonville--they have been very helpful. My husband is treating at the VA in Gainesville, but the folks at Mayo were very helpful in giving me info about their liver cancer program. The VA wasn't going to assign him an oncologist either, but I stamped my foot and insisted on a referral. Thank God I did, because she is the only one doing anything about his treatment, the GI doctors kind of have pushed him to the side as well. We are still trying to get him on the transplant list because his liver function is too low for any chemo and so far, the cancer hasn't spread outside of the liver. He has had one bland embolization and is scheduled for another in the upcoming month. I post regularly in the Caregivers section as well. Theres a lot of support here.

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