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Anyone with portal vein thrombosis and HCC?

Twomorefolks
Posts: 6
Joined: Apr 2012

My 63 yo husband was diagnosed with HCC 3 1/2 weeks ago. This came out of nowhere. He is healthy. Never smoked, done drugs, nor drank a lot. No hepatitis. Minuscule cirrhosis from age , etc. doctors tell me because of portal vein thrombosis with early signs of it leading into left lobe he can't have resection or transplant. He starts y-90 theraspheres radioembolization in one week and starts Nexavar tomorrow. I am looking at living donor hospitals (Florida doesn't have any) as well as ex-vivo transplant and overseas options.

Is there anyone out there who has found success in treating a similar case? If so, what did you do and where did you go?

We have a two-year-old daughter and I am desperately seeking help.

All comments welcome and greatly appreciated!!

Feel free to email me at sfolk@keewin.net or comment here.

All the best,
Sheila

XtremediverHCC
Posts: 59
Joined: Feb 2011

Sheila, I am sorry to hear of your husbands condition. I had portal vein thrombosis following a resection for HCC, it was approximately 15cm in size. I was treated with Warafin (which is a blood thinner) to breakup the thrombosis and that worked just fine. I am a little confused as to why they can't treat the thrombosis. Do you have the information on the location of the HCC lesion and it's size? I have survived 2 rounds with HCC in the last 5 years; I had hep-c (contracted during the Vietnam war) which I went through treatment for and now am undetectable, advanced stage of Cirrhosis, then HCC with 2 tumors first time treated with liver resection, then the Portal Vein Thrombosis, and then 1 tumor a 2nd time treated with a RFA procedure. I receive MRI's now every 6 months to help with early detection of another recurrence. I am 62 years of age. I would suggest seeking out a Comprehensive Cancer treatment center ( I go to the University of Michigan Hospital) and to obtain a 2nd opinion. Keep the faith, Jeff.

Twomorefolks
Posts: 6
Joined: Apr 2012

Thanks for your reply, Jeff. My husband has a 15cm tumor occupying his entire right lobe. He has a lot of portal vein thrombosis and I've been told it's starting to make it's way into the vein leading to the left lobe. An MRI two weeks ago revealed a lesion of 2.5 cm in the left lobe. No testing done to confirm if it's cancer in left lobe but likely is. He is being seen at the Mayo Clinic in Jacksonville. I've had two other surgeons in Orlando look at his case but nobody considers this to be a treatment destination, if you know what I mean. I am exploring other hospitals in other states. Can we talk by phone perhaps? If so email me at sfolk@keewin.net. I would love to pick your brain. Obviously time is of the essence with this type of disease. Much appreciated. Sheila

XtremediverHCC
Posts: 59
Joined: Feb 2011

Sheila, do you have a Cancer Center of America location nearby? They are known for treating cancers in an unconventional way that seems to have reasonable success. It sounds to me based upon your reply that your husbands cancer/thrombosis is much more involved than what mine was. My first round with HCC was with a 3.5cm tumor (confirmed through biopsy) that was located on the dome of the liver and a 1.4 cm tumor in the left lobe.. Not a good sign, however my surgeon was able to do a resection and obtain "a clear margin" - MRI's are typically pretty accurate with a diagnosis of cancer without the need for biopsy. If Mayo clinic is involved, then I would suspect that the diagnosis is accurate based upon their long standing involvement with cancer treatments. Seek out Cancer Center of America to see if they can be of help. I will add you both to my prayer list and please keep us informed; sharing can be very helpful.

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