hep c and harvoni

[linda803]

I haven't been in here for awhile, My husband took harvoni and is free of hep c,  He has been on the transplant list for 4 years, He had the tips procedure done in 2011 because of a bleed out that almost killed him, He has had liver cancer, They probed the cancer and it is gone, He is on lactolose because of H E , Also he vomits every third day and no one knows why, So we had a meeting with the transplant doctor yesterday, and because his hep c is gone and his meld score is only 16, They took him off the list, I asked what would happen if he got worse or what ever, And they said we would have to start over again, So now we have decided,  no matter what we have been sitting too long , it's time to enjoy life and start traveling,  What ever happens ,, happens,,, Had to vent Thanks

[HectorSF]

Typically if your husband had been diagnosed with HCC he should have gotten HCC “MELD exception points” for it and have accumulated enough MELD points until he reached a MELD score high enough for transplant. Before October of 2015 the patient received 22 MELD score points for having any HCC tumor 2.0 cm or larger. they then received extra points every 3 months until there MELD score was high enough to receive an organ. Typical wait times even in centers with the longest waiting times (such as in NYC and California) was about 1- 1 ½ years to accumulate a high enough MELD score to reach the top of the list. 2-3 years ago a MELD score in the low 30s got people with HCC liver transplants at my center here in Northern California.

Your husband must have had an unusual case of HCC and that the doctors thought could be treated with ablation treatment alone wouldn’t need a liver transplant. There are a few people who’s cirrhosis is in a very early stage or who have one small tumor who can have the HCC removed either by resection (removing a part of the liver with surgery) or with radiofrequency ablation (RFA) (literally cooking the tumor) who don’t need transplants. After treatment they are  monitored over time using CT or MRI scans to look for any newly developing tumors or recurrence of the treated tumor. If no new cancer appears after a certain amount of time the HCC is concerned cured.

For the vast majority of people with cirrhosis (90%+) once they develop HCC over time they will go on to develop new tumors and the treated tumors will regrow. This is why people who develop HCC are listed for liver transplant once their first tumor reaches 2.0 cm and even if that tumor or any tumors are totally obliterated by treatment (no tumors are seen), the patient will continue to accumulate HCC exception points every 3 months because the risk of developing new tumor and the cancer becoming untreatable is very high.

This is how I and everyone else who got a liver transplant for HCC did it.

Your husband should continue to have surveillance for HCC periodically to make sure that he doesn’t have recurrence of his HCC.

Best of luck to you both.
Hector

[linda803]

Hi Hector, I was talking about Gary,, Up here in Canada, I asked because of the stage he is in, but, That was there answer

[linda803]

His tumor was 1.5 cm

[HectorSF]

Here in the US what they typically do is wait for the tumor to grow to 2.0 cm, if it isn't that large when first detected, to get the initial 22 MELD exception points for the patient (this was how it was done before Oct 2015) then they would treat the tumor. Then they monitor the patient while they wait for transplant and treat any other tumors that arise during the waiting period.

I had two additional tumors occur after my first tumor before I got my transplant. I had 8 different HCC treatments on my 3 tumors. All of my friends who got liver transplants due to HCC here at my transplant center went through the same process.

This is what the American Association for the Study of Liver Diseases (AASLD) and the US United Network for Organ Sharing (UNOS) liver transplant protocols state. I believe the same or very similar protocols are used in Canada. Europe has their own but again it is very similar to the US protocol. Liver cancer is liver cancer no matter where it is found and treated at least in the industrialized world. In the underdeveloped world, liver cancer is a very common cancer and unfortunately often fatal. 550,000 death per year.

As I said previously your husband's case of HCC must have been different then typical HCC that is found in cirrhotic patients. Only his transplant center would know all of the details of his case that they used in assessing and deciding not to transplant your husband for his particular case of HCC.

Hector