stage 4 liver disease--questions

Notso, welcome to the forum. Was the combo even available in '95 or shortly thereafter? I was diagnosed with hep C in '93. At that time, the only treatment was interferon injections 3 x a week. After about 6 wks., my white count plummeted and I was taken off the drug. I tried again some months later and the same thing happened. I learned that trials were taking place on the new "combo" treatment, but when I was told I would need "frequent biopsies," I opted out. I'd had a very bad experience with the one that I'd had after diagnosis. Were you in a trial?

I've been fatigued since '91. It is what led to my diagnosis. In '93, it caused me to switch to only part-time work. It has definitely progressed over time, especially now that I have a new liver cancer. I find that I must get at least 11 hours of sleep to function...and sometimes still have to take a nap as I can't keep my eyes open. It seems nearly everyone with hep C has fatigue. Show your wife this response. Most also have their days and nights mixed up (here I am posting at 1 AM.)

Do you know what your genotype is? The new drugs are only effective for those with 1a or 1b. I'm guessing the Stage 4 is cirrhosis. Is that correct? Sorry for all the questions, but the more we know about your disease, the more we can help you.

Should you develop a cancerous liver tumor, your MELD score would increase. Mine went from a 7 to a 23 and I am on the transplant list. Have you been evaluated for transplant?

Hugs,
Connie

Good Morning to California,

My hubby has had HepC for over 40 years. Failed the treatment in 2003 and like you was very very ill the whole time. He lost 80+ pounds and looked like an escapee from a prison camp!

Though he was told to abstain from alcohol, he returned to daily driking within a year. This was NOT good as he already had cirrhosis and really did more andn more damage to his liver. He wasn't busting up bars and getting DUIs, he was having beer and wine or cocktails every night before and after dinner.

DO NOT DRINK ALCOHOL EVER. Lesson learned the hard way. IF YOU DRINK you will DIE sooner than later if you have cirrhosis.

They called it End Stage Liver Disease when Mike appeared the hepatology clinic in October 2010 after a bleeding episode while we were on vacation. His MELD was 24. He was so very sick. All his blood tests were bad. High liver functions, low red and white blood cells, anemia, low platelets, poor clotting, poor renal function...he was a mess. His urine was brown and his legs were full of fluids.

He was sleeping all the time and kinda acting crazy some days. They called that hepatic encephalopathy. Evidently you can't clear wastes and they can cause havoc with your mental status. He was told he couldn't drive...and did'nt drive for 9 months! He was aggressive and unreasonable often.

The sleeping is not unusual. Especially during the day. Lots of patients say their sleep time is upside down. Mike slept away many days and then was restless all night. Truth be told...he happed all the time, 24 hours a day, but never really slept a long time...2 or 3 hours at the most day and night. He stil naps everyday now,but usually sleeps most of the night.

With a boat load of meds and ABSTENANCE his MELD improved to high teens and he continued to have good and bad days for the next 8 months. The hepatologiest put him on blood pressure meds, diuretics, two meds to counteract the HE (hepatic encephalopathy), etc etc.

He had to go to an alcohol cecessation program (either in patient or AA -- he chose AA and went 4-6 times a week) and have a clean blood draw every week for 6 months to prove he was alcohol free. As he continued wiht his program he began an evaluation program for transplant here in Florida.

They also found a heptocellular carcinoma during one of the tests, so liver cancer on top of everything else. But on May 1st he got his new liver. And he is doing really well post transplant.

Others will post in later I am sure. Some patients themselves, and some spouses/caregivers like me who may share their stories. Some of those with ESLD don't quit drinking or can't. Their loved ones have sad stories to tell.

Best to you. This may be a difficult time for you. good luck with the treatment. Mike will likely need to do the treatment again...now that he has recuperated from the surgery.

Mama Lama

Notso, Loma Linda is indeed an excellent hospital for transplant.  Back in the 90s, I was working for Children's Medical Services here in FL and we had a baby who received 2 liver transplants from there.  I can't remember now if the liver came to her or she went there, but I believe that an air ambulance flew her there.  This was brand-new surgery for infants at the time and not many centers were doing it.

Are you on a transplant list?  Also, are you on any meds, such as diuretics?

David is right:  Nobody who doesn't have hep C can understand the fatigue, especially if one "looks good."  I've seen it described as "walking through molasses" and I think that description fits the feeling/physicality of the fatigue perfectly.  It's an effort to do things.  Even the thought of tackling something like ironing makes me tired.

Best of luck to you and I hope you will continue to post about your progress.

Hugs,

Connie

DDmom, is Dennis a candidate for the new treatment?

Hugs,

Connie

If he's genotype 1a or 1b, there can be a 75% or greater SVR. A subtype of 1a can increase that to 90%. Have him voice his concerns and ask questions at the appt. It may not be for him, but you don't know unless you investigate it.

Hugs,
Connie

There are 2 on the market, but one seems to get better results.  It is Vertex's telaprevir (brand name Incivek, (pronounced In-SEE-vik.)  It is only taken for 24 weeks.  It is like the combo, but with a 3rd drug (a protease inhibitor) added.  The first 12 weeks include the protease inhibitor (the new, 3rd drug) with interferon and ribavirin, and the final weeks are the combo alone.  Some may be asked to go longer on the combo part, depending on their response.  Everyone will be able to get this drug, regardless of ability to pay or lack of insurance (or problems with insurance paying for it.)

The other drug is Merck's boceprevir (brand name Victrelis.)  The protease inhibitor is in pill form with both drugs.  I believe there is only one injection a week of the interferon in both cases.

I was planning to start the Incevik the moment it became available (late May), but because I have a new liver cancer and it was decided to evaluate me for transplant and treat the tumor, I wasn't able to get on it.  I'm now on the transplant list and think it would be unlikely that I could start this treatment after TP, as they don't have data on the drug with post-transplant patients.  So I imagine I will end up on the combo.

If Dennis's doctor thinks he's a good candidate for this treatment, I hope he goes for it--shorter treatment time and much higher response rate.

Hugs and best of luck.  (I also see my hep doc on 9/6.)

Connie

That's great news, David!!  I surely hope I can get Incivek after transplant.  My hepatologist had said "possibly" when it first became available.  Thanks for the new info.

Hugs,

Connie