FATHER IN LAW

tuffenuff

Hi everyone! I'm an old pro at the head and neck discussion board but now I have a liver question.

Father in law was diagnosed with cirrhosis about 15 years ago. He went through a series of 3 different types of treatment, none of which worked. They gave him a life expectancy of about 5 years which he passed about 5 years ago.

Here is my question - He is saying that the doc says his treatment would consist of a shot once a week for 1 year. The cost is $20,000 per shot. What treatment are they talking about?? It just doesn't sound right to me. The cost or the duration. Thy both seem excessive.

I've asked him to please get a second opinion no matter what his doc recommends for treatment.

XtremediverHCC

Not aware of any treatment
Not aware of any treatment that will cure cirrhosis or I would do it. Sounds more like he might have hep-c which is a underlying cause of cirrhosis of the liver. That is treated by a self injected shot once a week for approximately 1 year to try to clear the virus. (48 weeks usually) I have stage 4-cirrhosis, I went through the treatment for hep-c virus as I previously described, cleared the virus and it was expensive when I did it-not $20K per shot, though. It was about $12K total for the full treatment (almost 6 years ago, now.) That is 3 times the cost for a liver transplant and not very viable in my opinion. Is he confused or is there something new that my hematologist doesn't know about? (She is one of the best in the country and located at the University of Michigan hospital). I would love to know more. I have had HCC from the cirrhosis now twice in that 6 year period, so....!

Dannielle

XtremediverHCC said:

Not aware of any treatment
Not aware of any treatment that will cure cirrhosis or I would do it. Sounds more like he might have hep-c which is a underlying cause of cirrhosis of the liver. That is treated by a self injected shot once a week for approximately 1 year to try to clear the virus. (48 weeks usually) I have stage 4-cirrhosis, I went through the treatment for hep-c virus as I previously described, cleared the virus and it was expensive when I did it-not $20K per shot, though. It was about $12K total for the full treatment (almost 6 years ago, now.) That is 3 times the cost for a liver transplant and not very viable in my opinion. Is he confused or is there something new that my hematologist doesn't know about? (She is one of the best in the country and located at the University of Michigan hospital). I would love to know more. I have had HCC from the cirrhosis now twice in that 6 year period, so....!

I would love for you to talk
I would love for you to talk to my dad. His situation is similar to yours. He is 62 and fought in Vietnam and contacted hep c. He also has cirrhosis and now just diagnosed with liver cancer with a blocked portal vein (tumor thrombus). They have told him there is nothing they can do besides Nexavar to try to shrink the tumor. He only has one tumor and it hasn't spread. He is feeling really depressed and feels like there is no hope...

tuffenuff

XtremediverHCC said:

Not aware of any treatment
Not aware of any treatment that will cure cirrhosis or I would do it. Sounds more like he might have hep-c which is a underlying cause of cirrhosis of the liver. That is treated by a self injected shot once a week for approximately 1 year to try to clear the virus. (48 weeks usually) I have stage 4-cirrhosis, I went through the treatment for hep-c virus as I previously described, cleared the virus and it was expensive when I did it-not $20K per shot, though. It was about $12K total for the full treatment (almost 6 years ago, now.) That is 3 times the cost for a liver transplant and not very viable in my opinion. Is he confused or is there something new that my hematologist doesn't know about? (She is one of the best in the country and located at the University of Michigan hospital). I would love to know more. I have had HCC from the cirrhosis now twice in that 6 year period, so....!

Yes it is hep-c. Sorry about
Yes it is hep-c. Sorry about that. I think he gets freaked out and really confused. Personally, if its an option, I think the transplant makes more sense. But he says his doc is talking about treatment then if it doesn't work then he will have to wait four years for a transplant???? He has finally applied with VA so maybe he will get some better info soon.

XtremediverHCC

Dannielle said:

I would love for you to talk
I would love for you to talk to my dad. His situation is similar to yours. He is 62 and fought in Vietnam and contacted hep c. He also has cirrhosis and now just diagnosed with liver cancer with a blocked portal vein (tumor thrombus). They have told him there is nothing they can do besides Nexavar to try to shrink the tumor. He only has one tumor and it hasn't spread. He is feeling really depressed and feels like there is no hope...

I am a Vietnam veteran, as
I am a Vietnam veteran, as well Dannielle. I will be 62 in 3 months. Cleared the Hep-C through the process I described in my other post you've read. Initially I had a 3.5 cm tumor on my liver which was treated by liver resection surgery-during that surgery they found a 2nd tumor that did not reveal itself during my MRI. Following recovery, 3 years later I had another one show up on a MRI and it was treated by RFA (radio frequency ablation) and have been tumor free for about 2 years now. I have been treated for a 15cm Portal Vein Thrombosis using Warafin which is a blood thinner and it dissipated completely. I believe I and many other Vietnam Vets contracted Hep-C from the inoculations we received by air gun prior to going over there. I am not knowledgable about Nexavar having not been on it. Share my story with your father, let him read your post and my response and let him know that this is not a death sentence. Get a 2nd opinion from a Comprehensive Cancer treatment center in your state-they can be more helpful than a typical doctor or hospital, I go to the University of Michigan hospital in Ann Arbor, Mich. My best wishes and prayers for both of you.

XtremediverHCC

tuffenuff said:

Yes it is hep-c. Sorry about
Yes it is hep-c. Sorry about that. I think he gets freaked out and really confused. Personally, if its an option, I think the transplant makes more sense. But he says his doc is talking about treatment then if it doesn't work then he will have to wait four years for a transplant???? He has finally applied with VA so maybe he will get some better info soon.

The transplant idea is
The transplant idea is wonderful, but Hep-C will only destroy the new liver if it is not treated first. The followup anti-rejection medicine is expensive and he would need to be on that for the rest of his life. A better option might be clear the virus, have RFA if possible or a liver resection and keep the transplant option as a last resort. That is the path of treatment I did under the advise of my team of specialist at the University of Michigan hospital. I have survived 6 years now and am back to living life completely and very thankfully. I go for a MRI twice a year as a precaution. Good luck.

tuffenuff

XtremediverHCC said:

The transplant idea is
The transplant idea is wonderful, but Hep-C will only destroy the new liver if it is not treated first. The followup anti-rejection medicine is expensive and he would need to be on that for the rest of his life. A better option might be clear the virus, have RFA if possible or a liver resection and keep the transplant option as a last resort. That is the path of treatment I did under the advise of my team of specialist at the University of Michigan hospital. I have survived 6 years now and am back to living life completely and very thankfully. I go for a MRI twice a year as a precaution. Good luck.

his scan came back no cancer
his scan came back no cancer or tumors of any kind! mother in law said they staged him at stage 4 hep-c. i dont know much about that. said he will start treatment with two meds he tried before (interferon and something else) plus will add a new pill to the mix. he was a nonresponsive subject with all the other treatments but some additional info we have now may explain that. hopefully it will work this time.

he was also in the military and suspects it was the air gun or dental work done in the military.

XtremediverHCC

tuffenuff said:

his scan came back no cancer
his scan came back no cancer or tumors of any kind! mother in law said they staged him at stage 4 hep-c. i dont know much about that. said he will start treatment with two meds he tried before (interferon and something else) plus will add a new pill to the mix. he was a nonresponsive subject with all the other treatments but some additional info we have now may explain that. hopefully it will work this time.

he was also in the military and suspects it was the air gun or dental work done in the military.

Hep-C attacks the liver and
Hep-C attacks the liver and causes the Cirrhosis; they don't stage Hep-C but they do stage Cirrhosis. Stage 4 is full blown Cirrhosis of the Liver and not curable. That being said, they will treat him for the Hep-C with the Interferon cocktail as before plus any new additives they now have. Once they are done with the treatment (and hopefully it clears the virus) then they should be watching him through periodic scans like a MRI, Ultrasound or CAT scan to find any tumors early enough to effectively treat them. Depending on his Genotype (version of the Hep-C virus) it may be difficult or easier to clear the virus. I personally went through the treatment twice as my Genotype was version 1a; the 2nd time cleared the virus. Based upon the information you have now, the news is basically good in that he has no cancer and they are working to clear the Hep-C virus. Cirrhosis of the Liver can be a fatal disease but it sounds like he has a good doctor who is working on the underlying problem and won't let it get out of hand. The VA will cover the cost and administrating of the Hep-C treatment if necessary. You can live a long time with Cirrhosis if you don't drink ANY alcohol, take Milk Thistle and eat healthy. Much better news than you originally thought.