Liver Transplant - - insights? end-arounds?

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KP
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Liver Transplant - - insights? end-arounds?

Postby KP » Mon Mar 26, 2007 9:07 pm

Hi All
This may be a sensitive subject but I have to ask.

It appears the "rules" for getting a liver transplant from a donor prohibit a transplant when the primary cancer is not in the liver. I know this is to prevent damaging a perfectly good liver with cancer if it comes back... but if the primary site is removed (colon) then the risk of cancer isn't so great right? I know it can travel...

Anyway - Is there ANY way that any of you know, to get a transplant if your cancer originates elsewhere, outside of the liver? Perhaps a private donor - I think its called donor-to-donor or a direct donor? Maybe in another country?

The stats show that although post survival rates for liver transplants where there was a primary site of cancer on the liver are LESS than other types of transplants (cirhossis etc) - they are better than not doing it at all.

My tumors are too large to resect my liver. The locations prevent a salvageable piece to use to sustain life while it grows back.

IDEAS????

Thanks,
Karen :wink:

missjv
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Postby missjv » Mon Mar 26, 2007 9:38 pm

hi karen,
well i think that the reason liver transplants are not done is because once cancer metastasis it becomes a systemic disease and replacing the liver with another would not do any good because the cancer could return. i know primary liver cancer they do transplants for because the cancer is confined and not traveling through your system. alot can be done though for liver mets. i was reading on a website from the university of pittsburgh medical center about different treatment options and there are several such as rfa, alcohol injections, chemobilization, sirt spheres, and the drug avastin has been doing a great job in helping people with large tumors become candidates for surgery for large tumors because it helps shrink them to where they can operate. i know from different people that they can remove up to 70% of liver cause it regenerates itself some on this board have had that much removed and are doing great. check out the upmc website they have good info on the liver.

missjv

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KP
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options limited!

Postby KP » Tue Mar 27, 2007 11:43 am

Thanks for your reply. I will check it out. I was at a presentation from Johns Hopkins on RFA, Cyberknife and some other treatments -then asked my dr and he said my tumors were too big for those....
I have been on chemo for 14 treatments so far - and admit I am lucky to be here and Avastin has done wonders. The tumors have shrunk to 1/2 their original size. I guess I am just stir crazy now. The last scan showed no change.....

I appreciate your input very much!
Karen

Christine
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Postby Christine » Tue Mar 27, 2007 12:34 pm

One of the biggest problems with a liver transplant is that you will have to go on immuno-suppression drugs for the rest of your life to prevent your body from rejecting the new liver. Your body would not be able to do anything to fight any remaining cancer cells.

I was lucky to qualify for a liver resection. They had to take about 70% of my liver and a few days later, the remaining liver was failing and I was put into the ICU and put on the transplant list. Two days later, my liver functions started to go back to normal and within a week I was taken off the transplant list.

Karen, have you gotten a second opinion or asked your doctor to refer you to a specialist in any of those treatments? When my oncologist referred me to my liver surgeon, he didn't think that the surgery would be possible, but he wanted to have an expert check it out. The liver surgeon didn't even pause before agreeing to do the surgery. Because of my age (29), he wanted to be agressive and as he said "we want you to see 70, so we're going to get that cancer out of you."

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KP
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WOW

Postby KP » Tue Mar 27, 2007 6:29 pm

Christine,
What a great story.
Are you NED?

I think I am right around the 70% mark. I am going to see my surgeon in two weeks. Originally it was "we'll do it even if they don't shrink" - then they started shrinking, and so they continued chemo. Its not shrinking the tumors any more. Now, they are staying the same.

The decision went before the "tumor board" - so the status of NO GO may be some sort of political or insurance related one??? Any ideas??

Karen

missjv
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Postby missjv » Tue Mar 27, 2007 6:57 pm

HI,
WOW IF THEY SHRUNK THAT MUCH THAT IS GREAT I HAD THE SAME RESPONSE TO CHEMO AND MY METS SHRUNK AND SURGERY WAS DONE AND I AM CURRENTLY NED. I HOPE THEY WILL DO SURGERY THAT IS THE ONLY CHANCE OF GETTING RID OF THIS CRAP. IF THEY WON'T DO IT CAN YOU GO SEE ANOTHER SURGEON? YOU NEED THAT SURGERY I WOULD FIND OUT WHAT THEIR DEAL IS AND I CERTAINLY HOPE IT IS NOT SOME POLITICAL THING LIKE YOU SAY THAT IS JUST NOT RIGHT THIS IS YOUR LIFE THEY ARE MESSING WITH. GOOD LUCK KEEP US POSTED.

MISSJV


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