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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.
V
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.

                                                                      Lauri
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.
Vincent
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):

http://www.pathology.vcu.edu/education/gi/images/3.3h-a.jpg
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
Avatar universal
I'd also like to ask how is my response -- half empty-half full -- so significantly different from your response: Just as much "ambiguity" as I see it and rightfully so, given the question.

Mre:"....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"

----------
Seems to me that both could be read the same way, so not sure what we're really debating here.

-- Jim
Avatar universal
I'd also like to ask how is my response -- half empty-half full -- so significantly different from your response: Just as much "ambiguity" as I see it and rightfully so, given the question.

Mre:"....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"

----------
Seems to me that both could be read the same way, so not sure what we're really debating here.

-- Jim
151263 tn?1243377877
Not trying to put you in the hot seat, but frankly I do think you sometimes intimate an overly blase "ohh it's not so serious" vibe when discussing a possible plan of action when it comes to people with advanced fibrosis (i.e F3) or even with people who outright have cirrhosis (even with fatty liver, a clearly confounding factor). And it's not that you word it explicitly in that way, you do choose your words carefully, but your general tone usually seems to be of the wait for something better genre. Just recently in gauf's "down" thread, in my view you didn't seem to communicate any sense of real urgency to gauf about his cirrhosis with fatty liver and even implied there may very well be "all the time you need":   "I don't know the exact condition of your liver, but cirrhosis is a very wide platform and hopefully you will have all the time you need for the right train to come in." etc. I've even seen you state that on some level you wished YOU had held off on treatment because of your tough tx and its after effects (even in the face of your F3-F4 status). I guess I just don't share your leanings towards the wait for something better philosophy when advanced, or even severe fibrosis is present.

Otherwise, of course I'm all for the "wait for something better" mode, but only in the case of people who truly can wait for 3-5 years with minimal risk. Anyone with F3 or worse, especially with fatty liver (and other confounding factors like type I diabetes), I wouldn't include in that category. If I had F3 with or without fatty liver, or cirrhosis with or without fatty liver, time would most certainly be of the essence. I'd be making tough decisions and would prepare myself for treatment via exercise/dietary changes and then aggressively treat with whatever I could get my hands on now. Even if I failed, even if it would be a miserable experience, it would buy time until I could get access to better drugs.

Anyway, just a difference in opinion I guess. I just think it's important to flatly state how serious F3 or beyond really is, including the possible consequences of waiting too long before treating.
Avatar universal
C'mon. I've stated probably close to a hundred times (maybe a thousand) that those with significant liver damage (stage 3 and 4) should treat. I've also stated numerous times, numerous times, that I didn't regret treating because I didn't have much of a choice being told I was between stage 3 and 4.

Yes, I might have mused -- but not recommended to anyone -- that maybe I should have waited but only a couple of times and probably in the context of finding out later that I was in actuality not between stage 3 and 4 but between stage 2 and 3. Big difference IMO and certainly I have a right to my musings, don't I?

Sorry you don't think I take signficant liver damage seriously but my trrack record here states otherwise. I have probably recommended among the most agressive treatment approaches of anyone here for those with signficant liver damage. And once and for the last time -- I've never minimized stage 3 or made it apart of my watch and wait point of view.

-- Jim

179856 tn?1333550962
Make no mistake there is no ambiguity in the statement - stage 3 is serious and it's bad. End of story.  There is no 'glass half full' here at this point - you've done poured all the water out already.

Liver damage does NOT move in a linear fashion.  Meaning it could have taken you ten years to go from 2 to 3 but it could take you less than one year to go from 3 to 4.  Nobody knows. Nobody CAN know.

What I do know is that right now there is nothing "better" on the horizon.  For all the talk about Vertex it is not available right now except in trials and there is no guarantee it will ever be approved by the FDA.

It is my firm opinion that you really don't have time to wait for something else and you need to try and treat again now if possible.  AT least doing treatment will give you a chance at some liver reversal and possibly at least put a hold on the continuing pattern of damage.

Were I you I would speak to a heptologist about doing Consensus Interferon on a daily basis.  For some relapsers and non-responders it has worked miracles.  Doing this will also enable you to be able to use rescue drugs so you aren't forced to opt out from low hemo or something.  They would not have to be forced to think of dose reduction because you COULD take the rescue drug and continue along on a full dose.  THAT is SO crucial!!!!!

I know it stinks.  I am a stage 3 too.  My doctor was ADAMENT that I did not have time to wait at all. I had already decided before my biopsy that I was going to treat regardless but when I found out I was that far along.........I started ASAP.

Good luck,  with all the different things that you have going against you right now (fatty liver, diabetes) I hope you seriously speak to a doctor about getting on the Infergen FAST.
151263 tn?1243377877
My initial "angels on the head of a pin" comment was in response to my interpretation of dscv's question. And my interpretation of his question was how long did he have until cirrhosis, ESLD, HCC and/or death? How fast would he progress and how quickly should he treat? And my response was fitting, who knows how long he has? Who knows how fast he will progress? Certainly not me (or anyone else for that matter), and thus my response. My response in no way was referring to how serious F3 with fatty liver was, and if you re-read the remaining context of my post, you'll see that's true. That's why I said " Stage 3 is advanced fibrosis, I wouldn't categorize it as "not that bad." etc.

As far as your statement that you've always recommended that those with F3 and F4 treat: You nearly always provide excellent, well reasoned and very helpful information to anyone who asks. And you're a great humanitarian for doing so, including helping me through my own treatment (which I'm thankful for, btw). And yes I'd say you usually do suggest that people with advanced liver disease treat. But on some occasions, without having a full blown J. Edgar Hoover FBI dossier of "jim statements" on hand, yeah, in my view I think you do at times give off the impression that existing drugs are so nasty that you should avoid them, perhaps even in the face of advanced fibrosis. Just my musings, but I've seen other people hit you with that notion as well. Not trying to start a flame war, but considering that your opinion is highly regarded and respected here (rightfully so), you have a special responsibility when it comes to life or death decision advice - which is precisely what a thread like this is about.

Peace bro.
Avatar universal
mre, I thought Jim's analogy was appropriate for his comment, I'll have to give him a full 2 points
"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?"


Jim,, sorry but, I  have to give mre a full 2 points,plus a half point extra credit for his analogy...:^)pro
"I suppose it's better than those things, but then so is a big kick in the nuts."
Avatar universal
You should probably take a look at this article. You need to register to view but it's free and easy to do so.

Insulin Resistance and Hepatic Steatosis in Patients With Chronic Hepatitis C
Source: Hepatitis Annual Update 2007
By: Stephen A. Harrison, MD, LTC, MC

Copy and past this abbreviated link:     http://www.tiny.cc/DWl2H
Avatar universal
Thanks for the nice words but for the rest of the stuff...

Mre:I think you do at times give off the impression that existing drugs are so nasty that you should avoid them, perhaps even in the face of advanced fibrosis.
-----------------------------------------------
I don't think so and please supply me with any advice I've given to hold off treatment in cases of advanced fibrosis because I haven't. The caveat being in a recent post to Gauf (or similar where someone treated unsuccessfuly, repeatedly, with SOC, and therefore I offered the thought of waiting for something that might actually work (do you see any problems here) again with the stipulation that his doctor thought he had time.

And speaking about Gauf, and your statement about my response, which I quote "...in my view you didn't seem to communicate any sense of real urgency to gauf about his cirrhosis with fatty liver and even implied there may very well be "all the time you need":..  Thread here: http://www.medhelp.org/posts/show/319744

I am truly at a loss for words. Gauf posts out of dispair seeing nothing but blackness and all I did was to try and put things into perspective. The entire thread is there (see link earlier) for anyone to read. And someone you've twisted this to mean I don't see any sense of urgency? Please read Gauf's original post again and my response.

Well, I guess both of us have gotten some stuff off our chests today -- actually, as long as we're unloading, maybe you should be a little more careful (as esteemed and influential member that YOU have now become) about raising false hope with Alinia, -- with numerous daily postings. -- and at least mention that no SVR data is in. I have the same hope with Alinia that you do, but while your intentions and words are usually OK, some of your posts can quite easily be misread -- hey, that was your line :)

Moving forward, I know you will do as you wish, but I do ask you to limit your responses to things I say -- and your views -- as opposed to characterizing how I say things or your opinions of my opinions. In other words, avoid the ad hominem.  I'll try to do the same, and do keep up the good work you've been doing here.

-- Jim

229003 tn?1193705524
thanks for posting that link, what a kewl site!  I thought I had seen them all..I liked how it allows you  to take a quiz on how to  instruct tx in certain scenarios, very kewl :)

Beth
Avatar universal
I do not post alot, but, I feel I must enter the ring on this one. This is my opinion & mine only, in MY case. (recognizing that everyone treats differently with different sides.) I am 64, F, 1B, stage 3, Grade 4, with beginning cirrhosis.I was diagnosed in May of 02. My biopsy read as follows: Moderately severe chronic hepatitus, compatible with chronic viral hepatitus and with probable early cirrhosis. I panicked, how, when and why did this happen? I researched & went to supposedly the best Gastroenterologist In Orlando, Fl., as Hepatologists were not that easily found. I wasted 48 wks. of treatment(Peg-Intron/Riba), with very little Doctor support. I was told I was a responder, then later informed a relapser. I suffered severe side effects, I guess the good news is that I didn't remember alot of them, being so heavenly drugged. I do remember the various times in the ER, the blood transfusions, and the anger. I took medical leave from my employer as I could not function, and yes the Riba was reduced to 800, and I took procrit. I waited 6 mths., researched & gathered every bit of info I could, found a highly recommended Hepatologist and started treatment again. This time I treated 52 wks. with Infergen/Riba. It was a virtual nightmare. Again horrendous sides, but this time my Doctor saw me every week for at least 12 wks. straight and provided me with appropriate meds and encouragement to continue. Guess what, it was so terrible that once again I vaguely remember and I showed 6 straight undetectibles and as soon as the treatment ended I relapsed. Again waiting, I then tried Pegasys Maintainence and at the end of 3 mths., I had to quit, because of the sides. I am not stating this to scare anybody away from treatment, for as you can see, I tried everything available!

Now, here comes the kicker. As a result of the Hep C, I have develped Neuropathy. My feet, legs & hands are involved. Numbness sets in without any warning, resulting in 16 falls, as I cannot feel my feet. On top of the Neuropathy which their really is no concrete treatment, Cryoglobulin appeared, with extreme purpura, itching and coldness. I am now treating at Shands Hospital at the University of Florida, after having gathered a team of 5 of the very best Doctors, the last one being Dr. Nelson, who is the Director of Hepatology for Shands, and we are putting the Hep C on the back burner, and attempting to eliminate the cryo with Rituxin, hoping that this will help to alleviate the Neuropathy. Their is no Doctor that will state that this is all connected to the Hep C, BUT, I am here to tell you that it is.

So, I guess the moral of this story is that Hep C can lead to many other dangerous diseases and it has to be your personal opinion whether to treat or not-and whatever your decision is will be the right one for you at the time. Personally, I wish that I had never started treatment. I was not sick-nor did I have any symptoms other than general fatigue, which comes with any career path.I asked many pertinent questions on my 2nd. round of therapy and was told by my Hepatologist, that I would probably have no problems for 10 yrs.,if I didn't treat at this time, and then we would probably have to react. Instead, I treated and have lost 5 yrs. of my life. I have had to face retirement, feeling like s--- and so on & so on. I cannot physically do many things which I used to do, which includes my writing skills and loss of short term memory. Interferon is extremely TOXIC and if your body rejects it, as mine, you are screwing yourself by continuing to attempt treatment, with what they have available today. But, it's a crapshoot, odds not being the best, but when life or death is the winning pot, most people will try anything. Again, alot of people can & do sail completely through these therapies and come out a winner! I congratulate them all immensely, as I know what they have been through.

As for JMJM's post, he has helped me tremendously. His research which he so readily shares has been very valuable to me. Everyone has a different story and everyone tells it differently, but when it comes down to treatment, it's your decision and as I stated it is usually right for you at the time. Don't sweat it, as I did, trust your gut instinct and listen to your heart.

I wish you the very Best, knowing that in a couple of years that their will be a cure for Hep C., and many of us will be able to celebrate! Until then-----------

My thoughts are with all,
SJL
Avatar universal
Thanks for the nice words and always good to hear from you although I truly wish your circumstances were very different.

And because of your circumstance, I think you understand some of my points better than most.

Not sure if you were referring to my post to Gauf or not, but what I told him  was in the context of his previous failed treatments. I was trying to offer some hope and perspective, not minimize the seriousness of his condition. When someone says they have stage 4 and failed two treatments, I think you have to look carefully at all the options. Of course, if he was treatment naive that would be an entirely different story.

You might want to post to him as someone who has been there. Here's the thread: http://www.medhelp.org/posts/show/319744

Hope you get the help you need at Shands.

All the best,

-- Jim
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