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Avatar universal

other's opinions please

I have Hep C. Geno type 1, stage 3 w fatty liver. Never overweight.
How long can stage 3 hold?
My impression is this is not that bad - correct?
Past treatment w 3 meds (over last 2-3 years).
Interferon w copegus
Albuferon w copegus
Infergin w copegus
I was told I was a "non responder" each time (but my viral loads DID respond some, to each)
Anyone similar & any info?
Thanks - not a "worrier" but Do want to know realism.
138 Responses
151263 tn?1243377877
That's really a loaded question akin to "how many angels can you fit onto the head of a pin?" It depends; it depends on the individual person's tolerance for risk and it depends physiologically on what your body will do in the next few years (which is impossible to predict). Stage 3 is advanced fibrosis, I wouldn't categorize it as "not that bad." Remember that the next stop is stage 4, which is cirrhosis. Plus on top of that you have fatty liver, which is another factor that doesn't weigh in your favor. Usually non-alcoholic fatty liver is associated with obesity, and can be alleviated (or resolved altogether) by dieting and proper weight control. Considering you are already at normal weight, there's not much you can do there (other than stop drinking if you do drink). Someone at stage 3 can progress to cirrhosis within just a few years, although some can hold their pattern for longer. But eventually if you've already deteriorated to that stage, you'll continue to progress onward to cirrhosis sooner or later. Also keep in mind that a biopsy evaluation is a subjective art and is only determined by a single tissue sample taken from a single tiny location. It's possible that the sample was taken from an area that may have had more or less damage than the rest of your liver. If it was less, the rest of your liver may already be closer to cirrhosis. Also, the clinician grading your slides may grade them as F3, another clinician might grade them as F4/early cirrhosis. Biopsy evaluations can vary, possibly even up to a whole grade one way or the other depending on who's doing the grading.

As far as what to do now: In my opinion I'd be hot to get cured, stage 3 with fatty liver would scare me. Should you lapse into cirrhosis, that could make it considerably more difficult for you to be cured. Not to mention your liver could be damaged irreparably even if you do get cured. If you arrest the damage before the onset of cirrhosis you stand a better chance of reversing at least some of the fibrosis (and perhaps regress to F2 or maybe even F1 over time). I wouldn't want it to get any worse. Here are some of your best options - first is to wait until a new drug called a protease inhibitor is available. The best one in the running right now is probably Telaprevir. It's in trials right now (I took it myself and was cured), and you might be able to sign up for  the phase 3 trial coming up soon (but they may not accept you because of your repeated treatment failures). If you can't get into a PI trial, one of them will probably be available from your doctor within about 3 years (maybe). Another option would be to treat again, except this time raise your ribavirin and/or Interferon dose above what is normally prescribed for the first several weeks of treatment. You can also treat for a longer period of time, 72 weeks is a common target duration for geno 1 "tough to treaters" (several here have treated that long). These two strategies either singularly or especially combined can significantly enhance your odds of achieving your SVR. Also there is a drug called Alinia that was originally not developed for hep C but has been found in early studies to apparently be a powerful HCV antiviral when dosed in conjunction with SOC (IFN+riba). There isn't conclusive data yet that proves Alinia would help someone with HCV become cured, but the prelim data suggests it probably will. Alinia also has a very low toxicity and side effect profile (unlike IFN and riba), so it shouldn't add to your treatment misery if you take it. And the best part is that it's already FDA approved and is already sitting on the pharmacist's shelf.

Hope this helps a little, good luck whatever you decide.
151263 tn?1243377877
One other question - how much do you weigh and how much ribavirin were you given during your various attempts?
Avatar universal
Thanks for all the info!
1. I am not a drinker; never was and I found that perplexing.  My Dr of 23 years, who also is close personal friend, knew that and therefore triple checked the original results before sending me for Hep C treatments.
2. I was taking 3 pills every morning & 3 every night ... Dr's warned me about the toxicity to others.
3. My current weight is 170; was 187 when originally diagnosed; dropped to 155 when on treatmnt
4. Height 5'10"
Avatar universal
Just re-read my write - did forget to add Diabetes Type I (15 years now) and just had a bone marrow infusion on Friday (12th) to bring constantly low iron (level 5) to better levels; terrible, terrible cramping lately. Told that swollen liver outer arteries are rubbing against other organs, at times, causing them to rupture / bleed; hence blood loss adds to low iron levels. Hopefully i will at least have my bone marrow restart making iron. Thanks again for passing along what you've learned. I have been being treated at Mayo Clinic, Jacksonville. They have great attitude, but you have told me some new about "near future" drugs.  I will ask them. Thanks again.
Avatar universal
Asking someone if stage 3 is good or bad is like asking is 65 young or old? It's very relative. One liver specialist suggested to me that stage 3 is very serious and another actually used the words "it's not that bad". Glass half empty or half full?

That said, it begs the question how long ago was your last biospy. I ask because unless you had a very recent biopsy, treating for the past three years may have reversed your liver damage from stag 3 to stage 2 or even better. So, if your biopsy is 3 years or more, either time for another, or perhaps find a Fibroscan site and get one of those.

Your options are to treat with current drugs; to enter a trial; to wait.

Regardless of your choice -- and to help make your choice -- you will want to see a liver specialist (hepatologist) who will help determine current liver condtion as well as figure out what went wrong with your past treatment attemps. If you're already seeing a liver specialist, maybe time for a fresh opinion after three previous tries.

Should you decide to treat again, you don't want to do the same thing all over again, or you will probably end up with the same results. You say you're a non-responder, so simply extending treatment may not be the answer and a change in dose (peg and.or riba) or drug may be necessary -- possibly including a trial drug like Telaprevir. Again, something a liver specialist should be able to help you with.

Good luck moving forward.

-- Jim
Avatar universal
hi, what is the cost of a Biospy ( Liver, Hep C)
Avatar universal
Thanks for the reply: The last bill I saw, from the Mayo Clinic, was about $2,700 - it may have included other Dr visits that day, too.
Avatar universal
Hi Jim ... & thanks for the input.
My last Biopsy was july 28th, '07
I am, and have been, under what I consider good hepatologist's at the Mayo Clinic in Jacksonville. They are always thorough and supportive - I am just looking to hear from "real patients", too.
Hoping for another trial - but the last one only allowed 2 very heavy doses and then an 18 month "evaluation"
250084 tn?1303311035
I was a 'weekend' drinker, but have carried Hep C @ 30 years. I am at stage 3 fibrosis and was sent straight to tx within 4 weeks. I was told, at Shands and excellent Dr., to start now as in "5-10" years I would be in cirrhosis, even having stopped all alcohol with otherwise healthy lifestyle, weight, etc.
  I am surprised anyone would call stage 3 'not that bad'??
Good luck in your decision and other health problems.

Avatar universal
Hi - thanks for you reply.  What is "TX"?
No one has told me that stage 3 "is not that bad"; that is what I was asking ....
trying to learn the reality and the "badness" of that stage.
151263 tn?1243377877
In regards to the iron deficit you mention, I don't know much about the marrow infusion, but you should know that excess iron in your blood can cause the virus to multiply in a more aggressive manner. Not suggesting you don't have the marrow infusion of course, but just make sure if you are on any type of iron supplementation your hepatologist is aware of that and knows how much you're taking. As to the diabetes, unfortunately HCV patients with diabetes (or insulin resistance) have been shown to be somewhat less responsive to IFN+riba treatment than those without diabetes (and that may have played a role in your previous treatment failures).

Also you mention being treated three times previously - were any of the treatments within a clinical trial environment? If so were there any restrictions on increased IFN and/or riba dosing and "rescue drugs" (Procrit/Neupogen) and /or treatment duration? If so, these restrictions can work against you in a very significant manner. I was in a blinded clinical trial where some people were given placebo, some weren't (without us knowing which was which). Some were given ribavirin, others weren't. Some were treated for 12 weeks, others 24, and others 48 weeks (all randomly assigned). And rescue drugs were prohibited during the first 12 weeks of treatment (even for those not receiving Telaprevir or ribavirin), which meant IFN/riba/VX950 dose reductions during the most critical phase of viral clearance (which caused some to fail treatment). We were also blinded from seeing our viral loads until week 20-24, which keeps you from knowing how you're doing - which keeps you from adjusting your treatment in a way that may enhance your odds of success. All in all the trial experience is a mixed experience, there's a lot of odds making and "sport" in it. Just because you *might* get access to a heraled new drug, it ain't all good for everyone, believe me (and lets not even get into the possible side effects of new drugs). Anyway, I was just asking for the purpose of giving you some insight as to why you may have failed some of your previous treatments, especially the albuferon one. Also wanted to give you a heads up as to what's really involved with signing up to clinical trials (if you decide that's your next step), and also trying to understand why you may have failed some of your previous treatments, especially the albuferon one.

And returning to stage 3 + fatty liver and the seriousness of it: I have to disagree with jim's insinuation of it being a somewhat ambiguous condition of "half full and half empy", or it depends on who you ask, or that it falls into some kind of ill defined, vague, esoteric "who's to say?" realm. Stage 3 with fatty liver is serious business, there just isn't any way of getting around it or viewing it as a "glass half full". Unless you want to compare it to cirrhosis, end stage liver disease, HCC (liver cancer), or death. I suppose it's better than those things, but then so is a big kick in the nuts. Jim was stage 3 by the way, and he treated aggressively for 54 weeks (or thereabouts) with greatly increased ribavirin levels that were well above the standard weight based dosage. I don't think he viewed his stage 3 status in a very ambiguous manner nor his glass as being half full when he learned of his stage 3 status (jim's SVR now too, btw). Not trying to scare you, but I don't think you should either. Below is a link with a picture of a stage 4 cirrhotic liver. That's only one stage more progressed than stage 3, and stage 3 really isn't that far off from what's seen in this image (and this isn't even considering the additional confounding factor of fatty liver):

Avatar universal
Mre: nd returning to stage 3 + fatty liver and the seriousness of it: I have to disagree with jim's insinuation of it being a somewhat ambiguous condition of "half full and half empy", or it depends on who you ask,
It was an analogy, not an "insinuation" and I guess just points out the deficiencies of using analogies to make a point. The hepatologist in question wasn't minimizing the seriousness (nor am I) of stage 3. He was most probably just comparing it to the many stage 4's he treats, some probably in need of transplant. So in that sense, his comment "it's not that bad", or my analogy (here we go again :) ) "half full/half empty" is relevant. IMO.

As to my case which you brought up. Let's look at the facts and what I've stated here from the very beginning. The latter first. I've always stated that watch and hold is my opinion for those with little or no liver damage but I've also advocated agressive treatment (like how I treated) for those with significant liver damage, as for example stage 3. Don't see how I've deviated from that here. But to further clarify -- and I'm certainly not advocating ANYONE do this -- but my diagmosis as told to me at the time was actually between stage 3 and 4 -- and I still waited 3 years to treat. So, no, I didn't panic and write my will as your post seems to suggest my reaction might have been :)

-- Jim
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