cirhosis and how bad is it going to be

[daleray2]

Recently told that last biopsy showed bridging and advance in liver desease and doctor says cirhosis is near so what does that mean in the real world? Anyone have a clue and can explain to me what to expect and how long before it just isn't worth it anymore. Dale

[RobertBeWell]

I just tried it and came up with 11 active studies, many in Nashville and Memphis.

[RobertBeWell]

Well, if your interested in a trial, go to the following web site:

www.clinicaltrials.gov

Click on the "Search for Trials" link. Key in "Tennessee and Hepatitis C" and you should get a bunch of stuff to work on.

Good luck!

[GoofyDad]

Dale -

You mention "relapse". thhat actually a good thing. It means you responded to the treatment, even though you did not remain undetectable. This will give you a leg up if you treat again, whether with the newer PI drugs, or with interferon and Riba.

Bill's liver was in about the same shape as yours. I'll let him tell his story, but after relapse he went after it again more agressively and hit a homerun, to use an October metaphor.

Have you seeked a second opinion? I asked my doc for a second opinion, and he said, "Well now that you ask, you're ugly too!"

[daleray2]

Robert it would take a fool to say they were not interested in anything that could cure this Hep and let the liver heal. Whatcha got in mind. Dale

[RobertBeWell]

Howdy Dale,

Since you're from the Volunteer State (like myself in the past, from Middle Tennessee), perhaps you could VOLUNTEER to be in a drug study! No cost, excellent care, and a shot at something better than just interferon and ribavirin.

Don't give up bro - you're a long, long way from the end of the line. Stick around. Perhaps it'll get you pumped back up about curing this. Did you know your liver WILL GET BETTER if you get rid of the Hep C? In many cases it does.

Stay tight,

Robert

[daleray2]

Thanks for the info Bill. It has been such a long and miserable road trying to fix this thing. I never did drugs or anything so best guess was that I got it from a blood trasfusion in 1976. Who really knows. Yes I was a member some years ago here and have been gone for a while. After my last relapse I just gave up I think. I just wanted as far away from people and doctors as possible. I am stage 4 on last biopsy a few months ago. My doctor said no more interferon it simply has little value to me. I agree. I am usually pretty upbeat type of guy but I am depressed and I think severly. I think I just don't care right now but I know this will pass and I will be looking for ways to improve the quality of life. So far I have been a poor investment in the area of treating. I am so glad for you though. What is different about you than me is the big question? Do they study that I wonder. Have a great evening. Dale

[Bill1954]

Hi Dale—

Man, it’s always worth it! Do I remember you posting in here previously? You might want to post more detail in your profile somewhere so others can read and understand where you are in the treatment parade. I see you’ve treated twice in the past; maybe you can provide some specifics?

Bridging fibrosis might also be described as stage F3 or stage F3-4. While it’s discouraging news, it’s far from the end of the line. We’ve had cirrhotics in here that have lived for 15 years or more, so you probably have time left to manage this.

The single best thing you can do for yourself right now is to avoid alcohol; if that’s all you accomplish, it’ll likely buy you quite a few quality years.

Have you considered participating in some of the clinical trials that involve one or more of the new protease/polymerase inhibitor drugs? These are used in conjunction with interferon/ribavirin and have yielded impressive results in trial. One guy in here had treated seven times previously, and was finally successful using the drug ‘Telaprevir’ along with interferon and riba.

At least one of these new drugs might be approved and released as soon as 2011; at least according to internet rumor, mfgr press releases, etc.

I was genotype 1, stage 3-4 w/bridging fibrosis as well, Dale. I treated twice, but was eventually successful.

Good luck and take care—

Bill

[daleray2]

I don't drink and haven't in 30 years and I'm slender alway have been and I don't eat a lot of sweats and I get a reasonable amount of exercise. I moved from scarring and a lower rating to bridging and get ready while I was trying hardest not to do anything wrong. I was part of a study group last year and have treated two times. Once with interferon and then with interferon and the pills and the shots for low white count and on and on and on. I am getting close to the end of my ropes having this pistol to my head. I won't be a burden to my family. I thank you for your time and hope your health is good. I'm a glorious 1A so that makes me special I guess. PS I was diagnosed in early 80's when they first found out how to do it and I have been cautious about everything since. Dale

[GoofyDad]

The onset of cirrhosis, and also the progression throught its stages is usually quite slow. If you can stop the disease before the cirrhosis ges too far along, the outlook should be quite good. Has the Dr talke dto you about getting on a trial using the newer drugs? These drugs will be in the market without trials before too long.

Avoiding alcohol and excess sugar, as well as maintaining a healthy weight are things you can do that will have a meaningful impact on slowing progression of your disease, People can live with cirrhosis for a long time.