stage 4 liver disease--questions

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notso1951
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/31/2011 11:19 PM (GMT -6)   
Hi Everyone, glad I found this site.
I'm a 60 yr. old white male living in California. I was told I had hep c in 1995. I got on the combo medication soon after I got the news. I did the treatment for 8 months with no sign of helping except to make me miserable for 8 months.
I now have stage 4 liver disease with a 13 MELD score. I will be starting the new drugs soon. There are two things I really notice with this disease. I have no appetite and somedays sleep most of the day away. I'm wondering if anyone else is fighting the sleep thing. My wife just doesn't understand how tired I am. Anyone have any feedback on this it would be much appreciated!
notso1951

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2011 12:14 AM (GMT -6)   
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
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3352
   Posted 8/1/2011 8:02 AM (GMT -6)   
ns1951,
Your symptoms are the same as everyone I spoken to (including myself) over the past 10 years. Nobody who hasn't been there understands what you're going through. People kept saying I looked fine, so why was I always tired, etc.. Are you prone to feeling chills as well?
Have a nice day!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3931
   Posted 8/1/2011 9:50 AM (GMT -6)   
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

notso1951
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 8/1/2011 12:07 PM (GMT -6)   
Wow--thanks for all the feedback. I took the first combo drug in 2000. I haven't had a drink in years. I do have cirrhosis. Yes the stage 4 is cirrhosis. I have been to Loma Linda transplant hospital. It's a very well know hospital here in so. Calif.
I am praying the new drug will work for me! Thanks for all your comments.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2011 12:50 PM (GMT -6)   

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



hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 8/1/2011 4:56:46 PM (GMT-6)


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 153
   Posted 8/1/2011 5:48 PM (GMT -6)   
Hi Notso,
 
My husband was a patient at Loma Linda as well and he was listed for transplant in 2000.  He was a patient of Dr. Hillebrands and when Dr. Hillebrand left Loma Linda and went to la Jolla he followed him there.  We miss Loma Linda and especially Judith but at the time he left there the hospital was having a change over and my husband wanted to stay with the same doctor.  Dr. Hillebrand practices in La Jolla and Las Vegas and there are times we have thought about coming back to Loma Linda just because we don't have the same connections with everyone in La Jolla as we did at Loma Linda....
 
My husband had treatment three different times starting in 1993 and last being in 2003.  The first two, he made it through treatment and responded well but then after a few months it was back....The last time his blood cells went crazy and he was taken off treatment.
 
His sleeping is just crazy to be honest.  He acts tired all the time but doesn't sleep at night but sleeps all day.  He also had had bouts of Encepalopathy(confusion, anger, not making much sense) He is on Xifaxan and Kristalose and is doing pretty good.
 
I know as a wife it's not easy understanding what is going on with my husband as some times he seems ok and then the next he seems off.  So this blog has been great and a lot of help for both of us....
 
Hey its cool seeing someone from our area!!
 
DDMom(Kathy and Dennis)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2011 5:58 PM (GMT -6)   

DDmom, is Dennis a candidate for the new treatment?

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 153
   Posted 8/1/2011 8:58 PM (GMT -6)   
Connie,


We are not sure yet Dennis has a appointment on the 6th of September with the Transplant doctor(Hepatologist) so we are going to ask him then. I've been talking to Dennis about it and he's a little nervous about it. He's afraid that any more treatments and it might mess up his chances for transplant as it will cause other issues. Then again every treatment he has had in the past has brought down his Liver levels and I think it has prevented him from getting worse. He has been on the transplant list for over 10 years now and when he was first put on he was really bad, so Dennis has mixed feelings about it....We will have to see after his appt.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2011 9:35 PM (GMT -6)   
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
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 153
   Posted 8/2/2011 9:42 AM (GMT -6)   
Connie,

I talked to Dennis and he said he is going to ask about it at his next appointment....He seemed very open to it. Dennis is a 1b. What is the name of the treatment you are talking about. I want to make sure we are asking about the right one.

Thanks Connie,
DDMom(Kathy and Dennis)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/2/2011 12:39 PM (GMT -6)   

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



hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 8/2/2011 11:42:51 AM (GMT-6)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3352
   Posted 8/2/2011 3:59 PM (GMT -6)   
Connie,
I think you're being too pessimistic about post transplant folks getting Incivek. By the time you receive a new liver, they will have tested it on many people who've had a transplant. Unless Incivek is proven to be bad for post transplant patients, that's probably going to be the accepted treatment. Remember, the drug doesn't need further FDA approval. Now it's up to transplant clinics to decide what to do.

The idea of Incivek was broached to me at my last appointment in Boston. Then, yesterday I had an interesting thing take place. I called in my prescription to Walgreen's for interferon/ribavirin and was asked some questions. That was a first. The pharmacist wanted to know my genotype and if I'd heard about Incivek. Sounds to me like they're getting ready for new orders from doctors.
Have a nice day!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/2/2011 4:48 PM (GMT -6)   

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

 


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 153
   Posted 8/3/2011 10:55 AM (GMT -6)   
 
  Thanks Connie for the information....We've been watching your process of getting listed for transplant as well as your cancer treatment and we are amazed at your strenghth and determination.  We are so excited for you being listed now...You went through a lot and finally made it!!:)  Thank goodness the getting listed part is over, now you just wait for the call!!
 
We'll let you know what we find out at Dennis's next appointment whether the doctor thinks he would be ok to start treatment.
 
Thanks,
DDMom(Kathy and Dennis)
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