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Thread: Looking for some guidance and help.

  1. #1

    Looking for some guidance and help.

    Hi. I am a daughter of a liver cancer patient. She has had Hep C since the early seventies not caught until 2008 and diagnosed with hepatocellular carcinoma in 2010. We have been through a lot of the ups and downs that I have read about on these threads. We are down now to the Mayo Clinic in Jacksonville. Has anyone heard anything about them? UPMC said there is nothing left but Nexavar since the portal vein has been invaded.

    I guess the Mayo Clinic there uses heat to kill the tumor. Anyone had any success with this type of treatment?

    She is on Nexevar now and having bad side effects....mostly with her skin and massive fatigue. From what I have read these are normal side effects.

    I guess I am just looking for some guidance. If anyone has any I would love to hear it.

    I posted 3 or 4 times on cancer compass and no one answered by posts. I figured I would try this one since I scroll through here once a week.


  2. #2
    Administrator Top User brainman's Avatar
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    Oct 2005
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    Hi silverlining. I am very sorry about your mother’s Liver Cancer. I am not sure about heat treatment. Are you sure it is not Radiofrequency Ablation? RFA is a common way to treat Liver Cancers.

    I hope someone with more personal experience with Liver Cancer will reply. Unfortunately, I do not know much.

    You and your mother are in my thoughts and prayers.
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Administrator Top User pbj11's Avatar
    Join Date
    May 2007
    Hi silverlining,

    I wanted to reply earlier, but forgot the name for RFA that Brainman mentioned. I am excited to see it being utilized. Mayo is pretty top flight, so if it's their recommendation, it's probably a good thing to do, if your Mom wants to pursue further treatment.

    I'm sorry about this long journey for your mother. My father also had liver cancer. His went through the Hep C, to cirrhosis, and wasn't officially diagnosed with the cancer until the night before he passed. That was in 1989 and detection/diagnosis seems to be done better now. Your Mom has a fighting chance for more time.

    I'm not aware of the complexities of the portal vein and why Nexavar is the only treatment at that point. It sounds like Mayo is your second stop or opinion for treatment or I'd suggest a second opinion.

    I hope others with more info will post to you, but please feel free to share with us, as we can offer you support. It's tough to watch your Mom get fatigued from the chemo, but you seem to understand that it goes with the territory. Hopefully they are doing regular bloodwork and helping with Neulasta, Neupogen, etc. if her counts are down. Low hemoglobin, platelets, and white blood count can really fatigue a person.

    God bless and keep us posted as to what the heat procedure is, but it sounds like Brainman knows RFA is used for liver cancer.

    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  4. #4
    Yes...it is RFA. The names of treatments for liver cancer, and I am sure other cancers, are very hard to pronounce and spell. She has gone to WVU cancer center and UPMC cancer center...no luck with either.

    Thank you both for your response. I appreciate it.


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