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Posted 12/15/2012 3:50 PM (GMT 0)
hello let me change my story a little bit in 1998 i was told that i had hep c and was told to stop drinking so i did its been 14 yrs clean they put on the interferon with the pills i went through that 4 times the last time i did a shot every day i am a non responder each time this year in jan i was told that i would need a liver transfer in about 8 to 10 years then a few months back i was told i have liver cancer l have had microwave and kimo to keep the tumers down frist there was only one then 4 now there are about 10 more my meld is 23 right but this is my story

 

Posted 12/15/2012 5:16 PM (GMT 0)
Shaggers,

Where are you, in the world I mean?

Welcome to the forum. I see you are a non responder who has has Hep C for a long time.

In the US, you would be close to translpant time with your situation. My partner had his tranpslant at MELD 22 becuase he was diagnosed with liver cancer.

The trick with the tumors is to keep their size down. If they are larger than 5cm, you become ineligible for transplant. Not because UNOS is mean, but because those with advanced liver cancer do not have as good a long term outcome as those with less advanced cancers.

HOWEVER, the tumor was the reason my partner got to the top of the list. They give extra points for liver cancer on the MELD scoring algorithm.

The trick is to be seen at a transplant center, have all the tests run, be on the waiting list and keep the tumors small, and you pop to the top of the list.

Our Moderator, Connie, had a low MELD, like 8 or 12, something like that, and went to MELD 22 when they found her tumor. She will tell her own story I am sure when she sees this post.

How are you feeling? Ascites, Heptatic Encephalopathy, Kidney problems???? If not, good for you. Connie felt very well be fore transplant. My partner's liver was fully decompensated and he was sooo ill we didn't think he would make it to the top of the list. That little tumor (it was small) saved his life.

Let us hear from you again.

Will you seek transplant options?

Best.

Carol
Posted 12/15/2012 5:44 PM (GMT 0)
Hello, Shaggers, and welcome to the forum. I've had liver cancer twice. The first time, there was one tumor that took up the entire rt. lobe of my liver and had metastasized into the inferior vena cava. It was way too large to even consider transplant. However, they shrunk it some with chemoembolization. I then participated in a drug study with TheraSphere, which killed the tumor but also the entire rt. lobe, which was excised. I did well for 4 years (except for fatigue from hep C.) Then I was found to have a tumor on my left lobe. At that point, I was told I needed a transplant. I received my transplant in Oct. 2011. I've had many set backs since then, but everything now has settled down. The fatigue is even worse now. I will hopefully undergo treatment in Feb. with the new 3-drug protocol.

Are your tumors all in one lobe or both? If only in one, they would take that lobe. Are you on the transplant list? I'm thinking not, due to the multitude of tumors.

I'm really sorry that you have not responded to treatment to shrink the tumors or to treatment.

Hugs,
Connie
Posted 12/16/2012 9:16 PM (GMT 0)
yes i am on the list my tumors are on both lobes my meld is 22 but will jump to 25 jan 10 i am listed at UCLA what i dont understand is that i was told that the liver dose not feel pain but mine sure dose and i am densgirl husbeen out of lancaster ca
Posted 12/16/2012 9:26 PM (GMT 0)
Well, hi, Dennis! The pain that some feel is from the swelling of the liver and it pressing on nerves or other organs. The gall bladder is attached to the underside of the rt. lobe, so that can also cause pain. If you've had a liver biopsy, when they puncture the capsule surrounding the liver, it hurts or at least has a feeling of pressure pain.

When diagnosed with liver cancer, one is automatically given a MELD of 22. The extra 3 points you will receive in Jan. is due to being on the transplant list for 3 mos. Lots of places will transplant at that score. In your case, you're in CA. I understand that there are a large number of people on the waiting list there. Do you know how large each of your tumors are?

Hugs,
Connie
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