other's opinions please

[DSCVG]

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.

[mremeet]

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.

[mremeet]

One other question - how much do you weigh and how much ribavirin were you given during your various attempts?

[DSCVG]

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"

[DSCVG]

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.

[jmjm530]

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

[hephepC]

hi, what is the cost of a Biospy ( Liver, Hep C)

[DSCVG]

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

[DSCVG]

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"

[Lady Lauri]

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

[DSCVG]

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

[mremeet]

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

[jmjm530]

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

[jmjm530]

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

[jmjm530]

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

[mremeet]

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.

[jmjm530]

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

[nygirl7]

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.

[mremeet]

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.

[Proactive]

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."

[mikesimon]

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

[jmjm530]

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

[PSP-n-Me]

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

[SJL]

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 (hepatitis), compatible with chronic viral hepatitus (hepatitis) 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

[jmjm530]

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

[mremeet]

I really don't have an interest in rehashing my sentiments about how I perceive you being a little "overly subdued" when it comes to your assessment/critique of advanced fibrosis in certain threads. My only point is that when I offer advice or information, I try and put myself in the situation that is being described and think to myself: What would I do? Not what would someone else do, but what would I do? And then offer whatever advice I can based on that premise. Based on this thread, and perhaps some others along a similar line of thought, I just get the impression you don't do the same thing. You appear more dispassionate when discussing treatment options of advanced liver disease then you were in your own F3 assessment and subsequent treatment action - which obviously entailed a very aggressive ribavirin regimen and an extended 48+ week treatment duration combined. In other words, you wisely recognized the seriousness and timeliness of being stage 3, you planned an aggressive action to do all you could within your power to eradicate - and then you acted and took decisive action and followed it through ALL the way to the bitter end. You went through hell and you *still* didn't let up on yourself even with the horrendous skin problems etc, and I know you did so because you deeply feared the consequences of failure...rightfully and smartly so in my view. I think you played the odds and your treatment just about perfectly. I guess I'm just a little perplexed as to why that philosophy (which you vigorously employed to your own benefit) doesn't come through more clearly and with more "verve" in threads like this, that's all.

As to your comments about alinia: "...maybe you should be a little more careful...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..."

Yes I noticed that you think I'm ringing the Alinia bell a little too loudly. But that's ok, I think it's appropriate to discuss it in the manner I have been. I think it might be the cat's meow, or perhaps a big part of what might become the cat's meow. I almost always choose my words carefully when it comes to what I say here, which certainly includes comments about Alinia. Again, here's what I said in this thread about it above:

"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."

Please explain to me what's wrong, or what's 'boy cried wolfish' about this statement? And although I didn't verbatimly state that it hasn't been proven to deliver SVR's I did address the issue as not being a proven cure yet (I don't know if DSCV even knows what an SVR is yet). I think it's important to talk about it and spread the word to those who may not already know about it, and I think I'm doing it in a responsible manner - I know I am. And as far as I know I usually mention Alinia within the context of threads like this; that is, when someone is more or less between a rock and a hard place. A place where life and death is at stake, tough decisions have to be made and it's appropriate to reach out and grab onto whatever straws might help. Take advantage of any edge that might be useful, even in the face of an absence of complete proof it will be helpful (which is also why I signed onto the first phase II VX950 trial, incidentally). Especially so if there seems to be very minimal (or essentially no) downsides in the event the drug turns out to be a dud (as in the case of Alinia). Don't you agree? C'mon dude, you know if you were back in the F3 saddle you'd be lasso-ing up Alinia in a heartbeat.

I mean what's worse, adding Alinia into the mix or getting a kick in the nuts? (that was specially for you proactive)  Need I say more? ;-)

[PSP-n-Me]

I just had to jump in here and tell you this - for the 1st time in MH history I think everything you have said in this post is right on the money honey!!!  Kudos to you...

This member (name withheld but you know who you are) is a dangerous member of this group if you ask me (and also the same is shared to me in email by others) He flip flops - he takes cut and pasted studies and adds "his own flare" to it...One day he is telling a newbie to take 1600 dose of riba after her Doc suggeted 800 (which incidently this person was on Procrit 2 weeks after the first shot of Interferon due to this double up) Next day he is telling people with significant liver damage to "watch and wait" for something that is not even frigging available!  I personally delayed my tx by a year due to the horrific stories he posted on here about his side effect's (which in my opinion were self induced by his playing with med doses) and if that isn't bad enough he now comes here on a daily basis and tells people it is okay to drink alcohol with HCV...I strongly warn people to listen to their doc's and not some name on the Internet...

God forbid a newbie would not make good choices about something as important as their health due to bad advise given by a "respected" member of this Community, that does not have any Medical Training...

[susan400]

I am a patient a Mayo-Jacksonville, too.   Susan

[jmjm530]

Mre: My only point is that when I offer advice or information, I try and put myself in the situation that is being described and think to myself: What would I do? Not what would someone else do, but what would I do?
---------------------
I'll try it one last time. I have stated my opinion that those that have little or no liver damage consider "watch n' wait". And that those with significant liver damage treat agressively.

I "watched n' waited" for over 20 years when I had little or no liver damage*. About five years ago I found out I had signficant liver damage (told between stage 3 and stage 4) and then decided it was time to treat. Three years later I actually did treat and treated agressively.

If you can show any inconsistency here, please let me know.
--------------
That said, what I have done is offered other reasonable options (and advice) other than what I personally did or would have done. I think this important because people here are looking for options as well as personal stories.

So, when in fact, I waited three years after finding out I was between stage 3 and 4, before treating -- I don't advise anyone else to wait that long and have so stated. That's why I tell people who have stage 3 and 4 liver damage that it's time to treat. Or am I a hypocrite because I'm not advising them to wait three years after being dx as stage 3 like I did?

-- Jim

* Actually I've been living with this for close to 40 years. I know the date exactly because I was one of the minority with a very symptomatic acute stage. Of course, no treatments offered back then. They didn't even call it Hep C at that time since it hadn't een discovered yet.

[mikesimon]

You're both right and you're both extremely brilliant, knowledgeable and compassionate and you're both the best source of advice we have here - collectively and individually. There, does that settle this? Mike

[PSP-n-Me]

hehe you're such a good moderator :)

[gauf]

I want to say something. I need this forum. This forum may very well save my life. I blindly followed my doc's recommendations because she was the expert and I was the good patient. 2 relapses later I am still kicking myself for not getting educated. My best hope of getting SVR was BEFORE I treated the first time. I suffered in vain. I know that now. I stumbled onto this forum when I decided to get some info and info I got. I feel guilty because I truly believed I had slain the dragon after my 2nd tox. I did not come back until I relapsed. I know better now. I have come to admire and trust the people here and feel a real bond.  I went through AA and in AA nobody is black, or white, or Dem or Rep, or rich, or poor; we were all just sick and some getting better. It's like that here. I know there are people here who have cleared and have not gone anywhere. I love these people. If someone takes the time to google Hep info every morning and cut and paste it along with his/her personal opinions on this forum, well God Bless you and thank you. And if someone has a different opinion or take on that info then God Bless you too.  Some doctors are humanitarians, and some doctors are scientists. I need both. I also need to talk to people that know what the hell it's like to have this disease.  I am sure we are all reasonably intelligent and can take info and opinions from all sides to help us with the very personel decision of "If, When, and How" to TX.  Jim's advice was instrumental in my decision to dump my doc and see a bona fide Hepatologist. FlGuy was instrumental in MY decision to pursue the double dosing option. HR & Mrmeet along with Forseegood were instrumental in my decision to pursue Alinia. I could go on. The point is that I needed all this input and knowledge to help me make the best decision for me. And I am most grateful. Beyond that, the forum really can cut through the seriousness of our plight by interjecting good humor!  I can relate to jims dry humor, I tend to do that too, however, as I recently found on another post, some people who do not know me may take a little offense at times. That's when I know I need to clarify my intentions. Thank you for that. I am just getting comfortable with being here!  It just gives me the warm fuzzies sometimes when I think of the people I never would have met if not for the forum. The ones who have really been through it..(NYGirl, Jim, Mrm, Fl guy, and on and on...) The good cheer from those like Meki (I envy your hubby!LOL) and Forseegood and Susan and on and on and on... I need all of you guys so keep doing what you do here.  Hi my name is Geoffrey D. (aka gauf) and I am a hepper.... and I want to live.... and I need you all. God Bless us.

[PSP-n-Me]

Is this your "idea" of dry humor -

Gauf said:

" all  Well duhhh. We all know that those scummy white trash nascar fans are all a bunch of inbred hillbillies whit all kinds of diseases.  Us progressive liberal commie loving aristocats have known that forever, duhhh!  "

[gauf]

Yes it is.

[PSP-n-Me]

well then you have a serious problem bud! it's discriminative and offensive to people like me that have family members who live in NC and frequently attend NASCAR, as well as any of the fans of the sport - and just for the record, my son in law works for the UNC - My daughter is a school teacher and my grandson is a 9 yer old gifted student - they are not white trash and most likely have more class in their fingers than someone who thinks the comment you made is "acceptable" humor..

[gauf]

Like i said before, Just illustrating the absurb by being absurb. Meant no offense.

[nygirl7]

I love NHRA drag car racing.  In fact, it's one of my biggest passions and I"m sitting here at work in a shirt Jeg Coughlin sent to me personally that says "Jegs Girls Rock" and pretty damn proud of it.  Does NHRA = Nascar mentality is what I'm curious about?  Cause I think I"m pretty damn cool.;)

Anyway in regard to this statement 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)

I find it pretty hard to swallow because two years ago it was the exact opposite advice - double dose, treat hard, do extra weeks.....

I think everyone has to again be reminded...use COMMON SENSE.  It depends not only on how bad your liver is damaged but also what stage of life you are in at the moment.  If you have great support and great insurance and a good job that will understand it might be better to treat right away than wait for it to progress and you are in another stage of life as well.  Personally I would have wanted to attack this disease whole heartidly even if I was stage 1 ... BEFORE I could advance any further. I'm bummed I didn't have that opportunity and instead didn't find out until I was stage 3.

[jmjm530]

NY:I find it pretty hard to swallow because two years ago it was the exact opposite advice - double dose, treat hard, do extra weeks.....
-----------------------------------------------
My advice hasn't changed. And I still advocate agressive treatment for stage 3 and stage 4. In fact, I've probably posted as much as anyone here on these agressive approaches including double-dosing, increased riba, pre-dosing riba, extending to 72, frequent PCRs, etc, etc.

But all of a sudden because of two posts -- one to Gauf where I simply wanted to let him know that cirrhosis was not the end of the world as he apparently was feeling at that time -- and another post where I made an analogy that is only "blase" if that is your bias -- all of a sudden I'm soft on treating stage 3? Frankly this is rubbish and anyone who has read my posts here knows its rubbish. And why I have to repeat myself on this numerous times in this post is beyond me. I'm done on this.

[Lady Lauri]

  I haven't read all the above pots, and most of them are the pro's in this.
I want to reply to what you asked me.
I do believe on the scale of 1-6, stage 3 IS serious, bottom line, and that stage for is the start of cirrhosis. My Dr. said as NYgirl, START NOW! (tho I am type 2b, easier to cure, less time on tx).
EACH situation is so different but I stongly suggest you see another Dr. and be sure a Hepatologist/liver specialist.
On the plain fact side of all.......stage 3 is nothing to take lightly.

OOP's.....just re-read your orig. post! You have done tx. 3 times?!  I guess my comment remains perhaps see another Dr. and until than, I am sure you are aware of all the diet/lifestyle changes to help slow damage down. The herb Milkthistle (PROVEN to help the liver function/process/detox so no new threads here. LOL) can help also.
I see you did the Albuferon. How did you tolerate that one? I am in the albuferon/Riba trial at Shands but 'drew' the norm-pegasy's/riba on that trial day. Just curious as to if you tolerated that better and obvioulsy you were in thier study trial. Very sorry it did not work for you. I have read stats on that trial and it seemd to be a bit better for Type 1's.
   Best to you,                                                 Lauri

[jmjm530]

And speaking of rubbish, I can't believe you not only sit back and stay silent on the ad homonem attack by one of your buddies here (PSP: "...This member (name withheld but you know who you are) is a dangerous member of this group if..." but now you pile on.

Who was here every step of the way for you on treatment, regardless of your liver damage? Who got you to take that early PCR? Who stayed on your a*ss to see Dr. J? I guess it's the guy who's not very agressive on treatment, huh? I tell you, I'm pretty fed up right now.

[Lady Lauri]

Uh oh! Now I did read all the post above. As I said to 'lookinnomore'
"you will find we all don't always agree here" :}. Keeps it from getting boring , for sure.

Nygirl...me to, me too! (on wish I could have tx'd BEFORE stage 3), but, (tell me this again later as it is slamming me NOW! :)  tx is 'easier' now than even a few years ago. And I try hard to live by that "everything happens for a reason' line :) Of course, have not figured out the Hep C reason :}
(actually, I have! But would be too long, another thread, another story, another day:} And meeting all you lovely people.
Gauf.....WITHOUT 'taking sides', getting into any of this debate- I have not been here long enough to get into it- BUT..... Your post about this site was faabuloouss :}  and ditto from me on this site and the people here.

Nascar? What's Nascar? Kidding, kidding! I don't follow much of any sports and not getting into that one.
  Just realized .....It's shot day.....sheeeett!
                  
                     HAVE A GOOD DAY ALL,                            Lauri

[Tallahassee]

Curious about your statement: "a bone marrow infusion on Friday (12th) to bring constantly low iron (level 5) to better levels".

Do you have low iron levels in the bone marrow? What are your BLOOD iron levels?
The reason I'm asking that after about 6-7 years of diff. Interferons treatments (in ~2002) my Dr. referred me to a Hematologist for a bone marrow biopsy (he wanted to be assured that my bone marrow was okay, since there was little knowledge of the long term bone marrow exposure to the interferon).

My bone marrow biopsy was beautiful, except I had “zero iron”.  Mean time, my blood tests indicated normal levels of iron.  Hematologist was insisting on “infusions of iron”.  I’m not sure now if he wanted to infuse in the bone marrow, I assumed that he recommended intravenous infusions.  Since iron is crucial to virus survival, I categorically refused this option.  I explained to a Hematologist that since my Hepatitis diagnosis, I’m working hard to prevent additional impute of iron in my system (except through my diet).  I remember a Hematologist’s reply: “Apparently, you succeeded, because you have zero storage of iron”.

Since I’m a pre-menopausal female, I said that instead of infusions, I’ll take iron supplements once a month for one week.  For better absorption, I suggested Iron Gluconate instead of Iron Sulfate (there are all over-the-counter supplemental forms of iron).  My Hematologist was so reluctant to give up the idea of infusions – he contacted my liver Dr., but my Doc. basically said that she is a chemist and she knows what she is doing.

Personally, I think “storage” levels are only crucial in times of starvation, bleeding episodes, and other emergencies.  I just was hoping that none of that will occur…

Speaking of your future treatment – there is no doubt you need one and you know it.  In my opinion, you can’t relax at all, but you need thoroughly to evaluate all your prior responses, new treatment options, etc.  Also, you need to consult at least a couple of Hematologists, no matter how happy and satisfied you are right now … new streams of thoughts are very important for creation of YOUR opinion.

I would like to suggest a general guideline:
1) Did you respond at all to regular Interferon (or Pegalated) w/ Riba (or co-pegasys, as you said)?  How fast was your response?? If you responded, you may discuss w/ Drs. about repeating treatment with higher dose of Peg and Riba (there are many people on this forum very knowledgeable about it) and/ or extending treatment.  You may also qualify to Vertex clinical trial (I personally would not consider any other trial, since you don’t have time to play around with different experiments).  Also, I would not wait for Vertex Fed. Approval, since again, in my opinion, your treatment is quiet urgent and you don’t know, when and if VX will be officially approved and when it will be manufactured in sufficient amount to satisfy expected high demand.

2) If you DID NOT respond at all to regular or pegalated interferon – Infergen w/ Riba is your only option (again, my humble opinion).  I see that you tried Infergen and failed … Before infergen max dose was approved 15 mcg x 3 times weekly.  Now you can take daily the same dose … sometimes Drs may prescribe higher dose at the beginning or at some point during your treatment and expect it to be a l-o-n-g run, but with Neupogen (for white blood cells) and Procrit (for red blood cells) and determination … and a little luck … everything is possible!  If you select this option, I can share with you more ideas on this treatment plan.

In any case, Interferon should at least slow down fibrosis of your liver.   Plus, Hep. C affects not only liver --- lymphatic system, kidneys, brain, joins, all possible kinds of autoimmune diseases, promotes osteoporosis … just to mention a few … and, I’m sure, with time scientists will discover more reasons for you to treat.

All the best!!  And act… do your research … just remember, you and only YOU responsible for your health!!!

[PSP-n-Me]

(PSP: "...This member (name withheld but you know who you are) is a dangerous member of this group if

if the shoe fits - wear it!

[nygirl7]

Jim, I certainly didn't mean to hurt your feelings.  I just honestly don't understand where the aggressive advivce went to and now it always seems to be "wait for the new drugs if you have time" well stage 3 isn't really in the place to be able to "wait" if you ask me. The Old Jim would never have said that. What if the new drug isn't approved for YEARS? It might not ever be. You did advise me to get the early PCR and give me some excellent advice. I just don't understand at all why you've become so much the opposite of what you used to say.

I just want you to know I didn't mean to hurt your feelings at all in any way.  it just very much confuses me that two years ago your whole philosphy was completely backwards to now - and I believe being cautiously optimistic about doing treatment is the better avenue, especially to a stage 3 with fatty liver. How much time is left? Nobody knows but it's over the tipping point of 2. you NEVER would have advised to wait before so it confuses the heck out of me that they guy who advocated extra riba - extra weeks - extra peg is now so ultra conservative sounding?

[Tallahassee]

Ditto... Doble Ditto!  Excellent post!

[Tallahassee]

I meant to say that you need to consult a couple of HEPATOLOGISTS, instead of "a couple of Hematologists".

[Susie2007]

I haven't read even half of these posts so I am not leaving anyone out attentionally. I think both Jim and mremeet have given you some fabulous advice. The only thing I want to share is that I was diagnosed in 1992 and had cirrhosis at that time with no way to know how long I had had it. I got my hep C in 1966. I've treated every time a new drug comes out. I also use low doses of interferon as maintenance even though the HALT C study will tell us at AASLD that it doesn't work. Here it is 2007 and I am still here with a well compensated liver. No one can tell us how long we will stay at any stage. Dr. Mitch Shiffman, lead hepdoc at Medical College of Va and one of the HALT C investigators told me that the natural history of cirrhosis is that over 80% of patients are still doing well 10 years after diagnosis. Please try to get that fat out of your liver with diet and exercise. Don't drink alcohol and stay in close contact with your doctor.

[gauf]

Very incouraging. Do you modify your diet or take Milk Thistle and/or supplements? Do you think that maintenance halted your cirrhotic progression?

[Whrose]

[jmjm530]

NY: I just honestly don't understand where the aggressive advivce went to and now it always seems to be "wait for the new drugs if you have time" well stage 3 isn't really in the place to be able to "wait" if you ask me. The Old Jim would never have said that
-------------------------------------------
I"ll try once again. I have NEVER changed my advice/opinion for those with significant liver damage. I almost always advise treating. And almost always agressively -- in fact more so than most here.

In this thread I gave DSCVG three options -- (1) to treat with current drugs; (2) to enter a trial; (1) to wait.

Issue has been taken with suggestions #2 and #3.

My suggestion #2 (enter a trial). The reason I felt this was a reasonable option is because DSCVG has failed treatment with the current drugs THREE times. Possibly his best chance then is with the newer PI's. Same choice btw that your Dr. J. included  in this thread here: http://www.medhelp.org/posts/show/323061 The exact same advice that your pal "PCP" ridiculed in one of the posts above after she called me "dangerous". Yes, Dr. J. told someone with signficant liver damage that one option was to wait for a PI trial. I hope you don't consider him "dangerous" as well.

My suggestion #3: (Wait).

Please read my post again. First, I said that DSC should re-biopsy to see if the three treatments had regressed the liver damage. I also advised to see a liver specialist and take the current liver damage into account. So, yes, if damage had regressed to stage 2 or 1, then "waiting" for something better becomes a reasonable option, especially with someone that has failed treatment THREE TIMES with the current drugs.

Bottom line is that my advice/opinion has never changed on this matter in the two years I've been here and offering someone who has failed treatment THREE TIMES with current drugs the option of waiting -- either for PI' or to re-biopsy to see if damage has regressed -- seemed reasonable to me at the time and still does.

It's nice to have friendships in a discussion group, but your pal was very much out of line both mischarcterizing what I said and calling me "dangerous". You should know that and your silence tells me more than frankly I wanted to know.

-- Jim

[Whrose]

i would like to come and support reason to all of the members and  great educators on this forum.

i am confident that jim and mre can hash out their differences. both are excellent debators and very informed. their dialogue is an asset to us all.

however i do take offense to some others below the belt comments to jim. that his personal opinions have been influenced by his experiences may be as informative as his exceptional ability to support others, digest and relay information, and share his insights. to anyone who has listened and supported him during his journey it would be quite obvious why he shares his view points which are not withour merit and are part of the process of an informed decision. i have never heard him prescribe  or direct treatment to any one in fact he always advises one to seek expert opinion of a hepatologist.
there is some big misunderstandings going on and some big bruises to others who are valuable to this community.
PSP....you in particular have crossed the line with your comment that jim is dangerous. "you know who you are" comment. please...grow up and take responsibilty for your own choices instead of placing them at jims feet. i certainly don't buy your statements.
Jim you certainly do not have to defend yourself or any of your comments. that you do try to debate with others is only another admirable quality in your wonderful heart of gold. i am sorry you had to have all this on your plate this morning. stay strong. your words stand on their own merit and this is a gift to us all.

hoping peace comes to all of us at the end of this debate.

[gauf]

Jim, see the new posts from Krusing and Debnevada. They need your input.

[jmjm530]

Thanks for the nice words. Yes, "Mre" and I have hashed things out before. No problem. Bottom line is that I'm right and he's wrong. Case closed :)

As to the other nonsense -- I'm always at a loss what to do against an ad hominem attack that grossly mischarcterizes what I say. As you suggest, "defending" yourself is unecessary and futile because the person doing the attacks has an agenda other than debating an issue. On the other hand, those new here may take what they read as fact, and that's not good either. Again, thanks for chiming in because frankly I was getting weary doing so.  

All the best,

-- Jim

[PSP-n-Me]

LMAO

[PSP-n-Me]

fools rush in -
beware of a wolf in a sheep skin is my last coment on this subject -

[jmjm530]

PSP: beware of a wolf in a sheep skin is my last coment on this subject -
--------------------------------------------------------
Are you referring to the fact that this is your THIRD screen name on Med Help, because Med Help booted you off before for similar ad hominem attacks? And don't try the "I was defending you" bit because the reason you got thrown off the first time was for mouthing off to administration in a very public manner.

[PSP-n-Me]

once again you haven't got a clue what you're talking about - you make these erroneous statements and people fall for it - I am asking you for the LAST time - no more communicationg with me - not in here, not in e-mal, no where - you got it!

[Whrose]

i wonder what the A stands for in LMAO...because it surely is an adjective to describe you.
instead of an apology to jim you have chosen to self righteous insulting response. your colors are quite obvious to everyone.
and as for the sheep that cross your path i extend a good luck and dose of insight that they will be able to get pass your wolfish behavior.
you may continue to comment all you like but hopefully you HAVE said your last...but lol i have a feeling it won't be.
yes all please beware there is a wolf on the loose here. read for yourselves and she will be obvious.

[jmjm530]

The statement isn't erroneous and "dip" sign off you sometimes use was part of your original screen name. If you don't want me to post to you, then stop posting to me in a cowardly way with veiled references such as "..This member (name withheld but you know who you are) is a dangerous member of this group if." Believe me, I have no reason or desire to post to you ever again as long as you do not post to me.

[PSP-n-Me]

deal - stay out of my way and I will stay out of yours -

But I warn you, I WILL speak up when I see you giving members bogus advice...either in here or in Delphi or anywhere else I come across you...In good conscience I will not sit back and let you tell people that have substantial liver damage to "watch and wait" for drugs that are not even on the market - or tell people that it is OKAY to drink alcohol with HCV or that it is OKAY to do what you say and not their Dcotors...You have a magical way with words and are very talented with your presentation to allow people to think how brilliant you are - well those of us that have been around here a long time know you - so I will not sit back anymore and just ignore the things you advise when they are not what a DOCTOR would advise...But other than that I DO NOT have a problem co exsisting with you and will try to ignore your puppet protectors

[gauf]

Just curious, do you happen to work for the U.S. Postal service?

[jmjm530]

And you should speak your opinions like everyone else should. And if they disagree with mine, so be it. That's what this place is all about. Just nix the personal sh*t and  so will I. Good day and have a good life and truly all the best with your SVR. It's been a long haul, I know because I've been there.

[mremeet]

Geez this has turned into an ugly thread. PCP you're outta line. I don't know what's transpired between you and jim in the past, but he's certainly not the bogeyman you make him out to be. I don't appreciate you using my honest disagreement/discussion with jim as an opportunity to attack him. I meant what I said, but lets get real here. This place is for us to help each other, not harm each other. Lets leave reality TV on the TV where it belongs.

[nygirl7]

I adore you both.  Please - let's just let the thread go and the poor person who posted it is going to be traumatized forever by this argument and will probably leave rather than deal with us morons.

Please just agree to disagree and move on.  You are both good people and I don't want to see either of you go for any reason.

If you want to you can pick apart my latest numbers - won't get my PCR back until Friday at the earliest possible BUT I did just get my liver enzymes back and while they were mid 200s pre-tx they are not 8 months after treatment ast 20 - alt 14.  I'd say 72 was indeed the magic number for me as I do believe that enzymes are excellent predictors of what is going on in your liver (indeed since that is how most of us are diagnosed with the disease to begin with!).  So - hopefully I have to plan a party in here and I'd like to invite you both.

So chill out!  :)  Said with a smile.

[Susie2007]

Personally I see nothing wrong with Jim's advice. One size fits all does not exist in this disease. The poster has said he has treated 3 times with standard of care (I presume the interferon was pegylated). Unless he goes to a trial with a PI or other new drug, his chance of responding to the same old thing is negligible. Also with counts so horrible, I can't imagine a trial would be available to him. It isn't to me either. I think we are all intelligent enough to know that things you read on a message board should be discussed with your own doctor as they are the ones who know your medical history. I hardly think Jim is acting in a dangerous manner.

To Gauf....I do not take any supplements nor do I watch my diet. I don't drink alcohol. I try to go without over-the-counter or prescription d meds unless it is absolutely necessary. To answer your question about whether or not maintenance has worked...up until this past May I would have said yes, absolutely. However, I now know the results of the maintenance part of the HALT C trial and it doesn't look good. I also know now that people can live with cirrhosis for a very long time if they take good care of themselves and nothing else medically goes too wrong. So I can't really answer your question now.l

[PSP-n-Me]

curse up - we already agreed to stay out of each others face :) No more from me unless of course I see advice that is bogus - but until then I am officially - as you say - chilled out - too bad others couldn't follow suite..

*dippy do dah*  

[gauf]

Thank you Susie. i have cirrhosis comp and hearing of those doing well with it helps keep me calm. Also, i was not aware that maintenance might not be a good way to bide time. Do you have a link to the Halt C study?

[mremeet]

ALT=14??? AST=20??? And at 8 months post tx??? (has it already been that long??) Well hot damn, I think that's it. Looks like all you went through was worth it after all. That's GOTTA feel good!

http://www.darkharbor.com/snoopydance/

[nygirl7]

I stopped Feb 2 with the interferon - 72 weeks so that makes it 8 months.  Wow.  I can't believe those numbers I'm too excited!

[katerika]

I am stage 3 grade 3/4, with NASH, so far not a diabetic. As far as a glass half full, I try to think in those terms. Somedays the glass looks empty, but it "never" looks full. I am now on week 22 of 1200 Riba, 150 Interferon, I am still not UND.  I have 2 more weeks to go for my PCR. After my biopsy in March, my Dr. suggested tx, within the next 6 months. I was like Okay lets start tomarrow!

Mremeet, maybe I am biased, it seems when you and jim disagree it starts with you disagreeing with him. It would be helpful if you voiced your "expert" opinion without attacking someone elses opinion. A little professional diplomacy is in order.
At this point I do value all opinions, I am here looking for various opinions and I need to do the research and make my own personal choices, because I have to live with them.
Thank all of you for all of your input.
Teri

[gauf]

Wow! Way to turn a thread around! Lookin goooooooodddd!

[jmjm530]

Well, now that we've gotten this all straightened out, anyone want to discuss alcohol ?

[jmjm530]

Yes, that was a joke.

And as we sometimes see, jokes (and analogies) don't always go over the way they're intended on the Net.

Hope everyone is having an otherwise good day.

-- Jim

[gauf]

Just what are you trying to imply?!  Do you think alcoholism is a joke!!!! Cause if you dooooo.... You are 1 sick son of a b$%#@!!!!!!!

[jmjm530]

LOL

[PSP-n-Me]

I think you two should share a couple 40 ouncers

[Whrose]

LOL!  maybe we should get together and go to treasure island! i heard puppets and cons do real well there!

[merryBe]

I don't know what I would have done without this forum.

You all brought me up to speed in record time, I knew to insidt on a biopsy, I knew to treat immediately when I got the result.

THANK YOU ALL SO MUCH.

Regarding stage 3......mine is stage 3/4      based on ALL the advice I've gotten, from member's and doctors, the bottom line as I see it, assuming I've correctly assimilated from said sources is as follows:

Hep C is a virus that attacts the liver which lead to the formation of fibrosis, (little pieces if grissle)
bridging fibrosis (bigger pieces that start connecting up) and chirrosis, final stage where fat and fibre has all replaced all normal tissue and there not enough left to do the 10,000 types of daily metaboloism that allows for life in the flesh.

Now from fibrosis the liver can recover, and even regenerate to normal in as little as 18 months.
People who donate parts of their liver actual grow back the part they donated, which is amazing!!
The further along the disease however, the less chance of full recovery. So those in stage 3/4 are playing russian roulette waiting around to see when Vertex or whomever will come out with something with no side effects. (Correct me whereever I'm wrong, anybody.)

which is why, based on ALL your advice I am on tx and glad of it. THANK YOU ONE AND ALL!!

But to the AUTHOR of this THREAD

Look, by the time you are at stage 3 and a non-responder, I'd be looking for any trial out there just to get your viral load down, even if it turns out not to get you to SVR at least it will have maybe knocked the virus back for a few more months. At some point, and it seems different for everyone,
some get to 10 or 20 million VRL before feeling really sick, but mine was only 1.4 mil and REALLY sick.........LOOK, the virus is doing damage whether you feel it or not!
the only question is to what extent, and since the liver itself has not got nerve cells in it, but only nerve cells in the surrounding tissue, you may not feel all that bad until the later stages when the inflamation (inflammation) and fluid accumulation starts pushing on your ribs and other things. By then,you won't be asking "how bad is this" or, how long really do I have.....

the question becomes, what can I do, and how soon can I do it. Meanwhile, don't drink, smoke anything, or do anything that is counter productive to your health as all this really does harm the liver.
there's bunches of trials out there, there may be a doctor willing to give you interferon everyday, as some are now on, think of it kinda like the AIDS epidemic. You don't see a bunch of HIV people going around wondering, should I take these medicines and live an extra 10 or 20 good years or should I just advance through the disease tofull blown AIDS in a year or 2 and be done with it. Most opt for the extra years, all joking and side effects aside.
that's what I'd do, not that I like feeling sick, just that the idea of being a whole lot sicker isn't much of a choice.
that's my opinion, and at least I'm sparing you what end stage liver disease entails.
You did ask for honesty though, so there's some to go with how others have weighed in. It's all good. Hope that helps.

[merryBe]

I'd also like to add, based on your later remark about internal bleeding that I did learn there are proceedured to remove excess fluid from the abdomen and that fluid tends to accumulate in various places. I'm not sure what type scans they use to determine where to aspirate, but I'm told that this does bring some relief temporarily, and if you are having bleeds from pressure I would definitely suggest you ask about this.
Evidently several quarts of excess fluid are removed from some people, and this may alieviate your anemia as well, assuming ;ess pressure means less bleeds.
Perhaps they've already ruled this out for you, but I was told it was a common procedure by a nurse.

[lanier]

WOW was I glad to see your post, I lived the same nightmare, but dumped my treatment after week13 of a scheduled 48.  I had developed skins issues that can only be descibed as "unreal"  I feel sometimes like I can not find a soft enough t-shirt to put on my body.  My hands are numb all the time, I became depressed to the point of suicidal idiation, and my fatigue reached a point that I had to plan at least 2 days in advance to go to the market.  All of these things I did not have prior to treatment, I have had a history of low platelets for at least 10 years, and autoimmune disorders by the stack, a general inner sadness that could be diagnosed as long term mild depression, but never a full blown dysfunction and a total lack of cognition.  I worked in health care for years, I am self aware, and I know what I did to myself with the decision to treat was a huge mistake.  Qaulity of life?  remember that. I had the biopsy in jan 07 I often wonder if I will ever be anything close to the same person I was, ever again.  

[foofighter]

Awesome discussion! The spirited discourse has clarified some earlier points you have made Jim, so that I don't have to go diggin through the archives to find them. It also brought people out of the woodwork with invalueable insight that couldn't have come at a better time as I agonize over what path to take.

I have been reading since May 06 and post occasionally. As so many others here, I have had some frustrating moments getting a clear picture of what is going on/what the next step is and communicating with my care team. You may remember Jim, I was told by my NP that in spite of a biopsy that indicated I was a 2/2, other factors say I am stage 4. The visit summary says "well-compensated early cirhossis." When talking to him about options, I mentioned what I have been reading here about 950 and made the comment unfortunately I can't wait the 3 years or more for it to become available. His reply: "Why not? You can wait." He is NP to a top hepatologist in the midwest.

I didn't "get" him at first (thanks Grand Oak for the insight), but now having gleaned so much info here regarding EVERY aspect of dealing with this disease, I now know he is just one guy, giving me his opinion based on his experience, not some all-powerful "decider" of my future. It is my job to continue to educate myself and somehow, put all of their opinions together to try suss out what is right for me. It would have been a nightmare without you peeps here going back and forth and telling your tales. More valuable than anything I have learned from the docs.

SJL, THANKS for your post. Your story may tip the scales for me. I am hoping to hear more info on a Hoffman LaRoche trial in the next couple days and I just don't know what I want to do (if I qualify). Jim I am absolutely on the same page as you, as far as waiting to treat if at al possible, so I will need your two cents (as well as anyone else who cares to chime in). I am working on a post with my particulars that I will hit you with after the trial nurse contacts me, so please look for my post.

Again, thanks to everyone for sharing your info.

[jmjm530]

Fighter: "You may remember Jim, I was told by my NP that in spite of a biopsy that indicated I was a 2/2, other factors say I am stage 4. "
-----------------------------------
Good to hear from you, it's been awhile.

As you know, half of "watch and wait" is watch, and sometimes you have to do that in an agressive manner. If your biopsy isn't within three years, you might want to re-biopsy. If the biopsy is recent, you might want to collect the slide set and send it to Mayo or a top-line hepatologist for evaluation, even if not local. And, if it were me, in addition to doing that, I would want to have a Fibroscan.

Asuming Fibroscan is still in trial, here are a list of the trial centers. It's a painless/non-invasive procedure that takes 5 minutes and should be very useful given the disparity of your last biopsy and symptons.
http://clinicaltrials.gov/ct/show/NCT00125762?order=1

Alternatively, we have a very knowledgeable hepatitis researcher who posts here from time to time, that we nickname "HR". He's based in CA and has his own Fibroscan machine, and in fact has scanned several members here. If you want to pursue that route, post, or send a private message to one of our members "Forseegood" who is in contact with "HR".

Don't know too much about the LaRoche trial, but I do hope it's something that can benefit you.

All the best,

-- Jim

[R Glass]

And as we sometimes see, jokes (and analogies) don't always go over the way they're intended on the Net.

You just had to bring that up LOL

[foofighter]

Just left a message for the Fibroscan trial contact in St. Louis. Hopefully it just one appointment (10-hour drive). Do you know?

Excellent suggestion that for some reason had not occurred to me before, in spite of all the posts about it. Heck, if it will help me know whether I am closer to a  2 than a solid 4 my decision will probably be to wait. My last biopsy was July 06 but it was re-read for the HCV-796 trial this past May. The pathologist's report again contradicted my NP's diagnosis. In fact he upgraded me to a 2-1 (less inflamation (inflammation)). I tell ya.

Anyway, hopefully I will qualify for this study and I can get down there before much more happens with the polymerase trial.

Thanks!

[jmjm530]

Not familiar with the St. Louis site, but based on another Fibroscan site protocol, it's all done in one day.

The way it went was you see the doc, get the scan, then see the doc again and review the results.

The scan itself takes only a few minutes and is non-evasive unless you're extremely ticklish :)

They will probably want your biopsy slides either in advance or at the time of the scan, so you might want to start gathering your original biopsy slides. It's not one slide by a set of around 4-6, so make sure you get them all.

Best to get send the slides in advance if given the option, because then you might not only be able to get the scan result at your visit, but possibly a second-opinion on your biopsy slides. If not, you should be able to get a copy of the trial center's pathology report (on your slides) at a later date. Of course you will want to go over all this with the trial coordinator.

-- Jim

[jmjm530]

To be more specific, it all should be done  within a couple of hours (exam, scan, review of scan results) as the scan results are generated by the computer in real time.

[foofighter]

Do you have to go through your liver guy to get the slides? Are they copies or originals? Can I contact the hospital and request them myself? Or have my primary care doc do it?  The results have all the contact info at the top of the fax.

[FlGuy]

A couple of thing to check out.  If you see the trial link that Jim in this thread (here it is again)
http://clinicaltrials.gov/ct/show/NCT00125762?order=1    .  You'll see that, if in the test population, that the bx needs to be within 6 month of the fibroscan.  Just something to research.

As for location of the slides.  I had mine done by a radiologist who has privileges at a local hospital in the same day surgery area.  When I went hunting for them, the hospital had them and would have given them to me without ragiologist, tx doc or PCP approval.  I guess they think it's me getting myself together.  At least that's my core belief. It all clicked for me.

[foofighter]

I read and re-read that line. I thought it meant that if you had not had a biopsy, it would be required within 6 months. Or have I read it wrong? I bet my liver guy would not give me a referral for another.

Subject has had or will have a liver biopsy for chronic liver disease, secondary to HBV or HCV or within 6 months of FibroScan (experimental cohort 1 only).

[jmjm530]

Some of these sites have different and/or multiple Fibroscan trials going on at the same time. I believe at one point a biopsy 2-3 years old was OK. Just check with the trial coordinator and you'll know for sure.

As to hunting down the slides, I suppose there are various ways. I tried to cut out the "middle-man", i.e. my doctor's very busy office -- and called the hosptital records department -- or whatever dept handled it -- directly. After a few transfers I finally got to the right place and they explained the protocol which is usually filling out some sort of release.

If I remember correctly, I think I went to pick them up within a week or so, but came home and only found one slide. Then I called back and they could only find a couple more slides. Getting the entire slide set -- including the special stain slides -- was like pulling teeth, but they finally found them in slide warehouse, or wherever they keep them.

Bottom line is you want the in a hurry is to hunt them down yourself and keep on top of it. If I let my doc's secretary do it, I'm sure I still wouldn't have the entire set.

-- Jim

[FlGuy]

That's what I meant.  Some assumptions or questions in that phrasing.  Let's say that they'll do the scan if you promise to do the bx later.  Will they give you scan results or wait until you deliver on the subsequent bx?

You might shoot an question to Copyman.  He may have just (couple months) gone through the same scenario in Boston.  Little fuzzy on what he said.

[jmjm530]

Here's what they say: "Subject has had or will have a liver biopsy for chronic liver disease, secondary to HBV or HCV or within 6 months of FibroScan (experimental cohort 1 only)."
http://clinicaltrials.gov/ct/show/NCT00125762?order=1

I assume then that those who got scanned with a biospy older than six months are in a different cohort and I know for a fact that people have been scanned in the past with biopsies older then six months.

Again, just check with the trial coordinator. And yes, I believe they will scan you based on the promise of a subsequent biopsy. Again check.

[foofighter]

I'm on it. I was fortunate to reach someone at the trial site and she not only transferred me to his voicemail, but gave me his e-mail address as well. The hospital where my biopsy was done is just a few blocks from my house, so it is easy to drop in if necessary.

Thanks guys. Best I have felt about this in a long while. It will be like a second opinion, without the hassle of changing docs.

[Susie2007]

The HALT C study is not yet published. It is being presented at AASLD in early November. I will be there and promise to come and tell you what they say. Hopefully the presentation will come with written material that I can scan and post for everyone.

[DSCVG]

I want to thank All of you for your opinions & advice.  I welcome different points of view and realize that you'r is not the only one and "weigh and consider everything". So far, it's been lots of help!

[holdinghope]

To Treat or Not to Treat!  I joined this forum six weeks ago, when my husband was admitted to the hospital with the most horrendous case of cutaneous vasculitis the doctors had ever seen.  He was diagnosed with Hep C, cryo, leukocytoclastic vasculitis, along with the SLE and ITP that he already had, post splenectomy.  I met a wonderful friend on this forum, that has helped me wade through the vast uncertainty that is the virus Heptatitis C and has given me her valuable input on her experiences.  Please remember this, it is very important to know all of the facts.  Do not listen to just one doctor, and challenge the doctors to answer the questions and prove themselves.  Listen to the people on this forum.  They live with the disease and they live with the treatments.  They can give you the best input on what really happens when you are home, going through treatment.  Not what the doctor sees on  your monthly appointment.  

In my husband's case, there are many factors to weigh.  He is a 1B genotype, grade 2 stage 4, and the doctor's in the hospital all pushed the interferon.  That may not be the answer for him.  I have spent countless hours researching and asking and asking again, question after question.  What will happen to him if he has the treatment???  I have seen him suffer through severe ITP and now the vasculitis and cryo.  I don't know if he could last through interferon, with the GI doctor suggesting the infegen?  With all of his auto-immune issues, they may awaken with the interferon treatment and there may be no way to stop them.  My instinct tells me to wait, treat the cryo with Rituxin and do more and more research, ask more questions.  It is a personal decision.  Do not let the doctors dictate your life and your treatment.  YOU are the one that has to live through it, day after day, and YOUR family has to watch you go through it.  My husband trusts in me to do all I can for him and we talk about the possible outcomes.  We are going by instinct at this point, regardless of what the doctors read in the "textbook".  My husband and I are deciding on his care, NOT the doctors.    

[DSCVG]

I forgot to ask, so I can compare:
What kind of viral load #'s are you displaying?
What is their correlation to time of progression?
Mine have really increased ...
Thanks,
V

[DSCVG]

:)

[Lady Lauri]

D*m V, even in having the couple confusing mails about understanding the albuferon trial, I didn't realize you had so many other health issue's. So sorry. I wonder, was the bone marrow problem there before that odd 2 week trial???
Going to reply more later on the other mail. As usual lately, tired, going to bed. :{
                                                             LL

[geterdone]

The best thing MedHelp has done for this site is to develop the under ground railroad. I for one have noticed that many people who started out posting do not post on top as much anymore because of not being heard and too many pissing contest which disrupts the ebbs and tides of the various stages of the TX cycles of each member here and it is a shame that this is happening. The new people coming here will also learn the same in time, so what will be left, just ****.

jasper

[DSCVG]

I have treated 3 different times now; 3 different drugs.
"non Responder" all 3 times.
Going to Duke Univ Med Center on the 8th, for different evaluation, by different doctor, just in case.  Very happy so far with Mayo.
No, I do not "post much" - not learning by my talking, but by me reading & listening ... unless I have a specific question.
Thanks for the input, though.
V

[alagirl]

My instinct tells me to wait, treat the cryo with Rituxin and do more and more research, ask more questions.
--------------------------------------------------
I don't know if this helps but I did read a recent study where they said that the pre-existing positive ana's did not predict who would develop autoimmune issues on treatment.  It made me feel a little better going in since I have some issues along those lines, and in fact, my very underlying anemia may be autoimmune in nature.  If I find it I will post it for you or send it to you.

[alagirl]

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.
------------------------------------------
It really seems to me that with hepc alcohol is not necessarily the keynote in the speech that declares how much damage will be done to your liver how fast.  I have the same type of background.  I rarely drink and when I do it is a glass of whatever.  By rarely I mean not even monthly.  I don't have a moral issue with it, its just something I only do if I have to entertain customers and most of my business is conducted long distance.  Yet I had immediate acute hepatitis soon after exposure and very quickly my enzymes in my liver increased.  I can only speculate that damage, for me, would have occurred sooner rather than later.

I think the stigma in this area harkens back from the days when the type of cihrrosis that was seen was so frequently alcoholic in nature.  And indeed, looking back, it may be that even some of those cases were hepc, unbeknownst to anyone.

[alagirl]

and of course, lest the alcohol nazis pounce on me, it should go without saying that I don't drink at all since I've been diagnosed with acute hepc and I'm currently treating.

[DSCVG]

I forgot to ask, so I can compare:
What kind of viral load #'s are you displaying?
What is their correlation to time of progression?
Mine have really increased ...
Thanks,
V

[jmjm530]

No correlation between viral load numbers at any point in time and the amount of liver damage or progression of liver damage. Viral load can go up an down. You can have low viral load with a lot of damage and high viral load with very little damage. Or vice versa. BTW are you seeing Dr. McHutch at Duke? The place has an excellent reputation.

All the best,

-- Jim

[Willy50]

I just finally read this thread; sheesh!!

This is just one more opinion.  Some doctors would refuse to treat you since they don't have much that would be much different that what you've already done.

Some insurance companies would refuse to pay for re-treatment for the same reason.  

What chances are you given if you retreat?

I would venture a guess that you already know that stage 3 is serious but that it depends if this is a recent score oand if this is an accurate score.  What other personal situations are going on that make you more likely to Succeed or Fail?

With your staging you will benefit from feedback and investigation but it probably comes down to your choice based on the doctors recomendation .  

Since you've failed 3 times....i would want to be convinced by my doctor that retreating was a sound decision.

Could you look into trials so that you might be able to find something more effective?  Even if you get randomised into a control arm you may get free SOC and a chance to roll into a "real" trial arm should your viral response in the SOC arm fail.

Just an idea.

By the way people.......If you took a poll..... who would be one of the HEP forums top responders to threads?  Who would people post questions to when they needed a respected answer?  The answer; someone that deserves at the very least some level of politeness.

Willy

[Mr Liver]

" I personally delayed my tx by a year due to the horrific stories he posted on here about his side effect's"

You delayed tx because of ONE person's tx stories ? On the INTERNET, no less ? You don't expect anyone to really believe this do you ?  Incredible.
Mr Liver

[alagirl]

and if that isn't bad enough he now comes here on a daily basis and tells people it is okay to drink alcohol with HCV...I strongly warn people to listen to their doc's and not some name on the Internet...
-------------------------------------------------------------
On a daily basis?  It must have escaped me.  And Jim is constantly telling people to check with their doctor.  I can't remember these missives he's purportedly sent out instrucling me to drink as a treatment protocol, all I remember is a lot of supportive info regarding my own tx and the fact that I needed to watch carefully my red blood cell count given my history (advice which, by the way, has paid out in spades - were it not for my early ramping up I would probably already have had either a transfusion or a brief stoppage in treatment and if not forewarned, I would not have known to even think of doing it so soon).  

I can't see blaming another board member for personal treatment decisions though, including failure or reluctance to treat due to fear of sides.  

Certainly I ask advice on this board and I do assess different members a credibility rating in terms of overall articulartion, knowledge, iq, research, and a number of other factors before deciding how sound I feel their advice is.   Jim's advice to me has been excellent.  

We disagree somewhat perhaps on ferocity of treatment, although I am starting to see the value in balancing all things, toxicity of drugs, vs. damage, vs. etc.

The reason that I feel most strongly about the absolute eradication of the virus from the system using any and all means possible is that I strongly believe that newer studies will continue to show more and more impact on other organ systems of the body due to hepc.  So I am basing, actually, my view on theory, or my hunch based on some recent research.  It is not necessarily the soundest way to go.  For me, I have plenty of room to theorize and speculate because I am a new hep c'er.  New acute infection and new in treatment.  I can spin theories until the cows come home.  I have plenty of room to posture and speculate.  And even more time.

To give advice to most people here, who have had this virus for years, if not decades, is a horse of an entirely different color.  I can give you theory and research and plenty of medical information in general about how different systems work, but real experience and years of experience living with hepc?  not so much.  That's something Jim can and does do.  I can only sit back and watch.  (Right.  So I still chime in, that's just me liking the sound of my own voice.  Can't help it.)

And Gauf - that info would be coming to you straight from my pinko commie liberal non-nascar lovin' home (even if it is located in the heart of dixie).

Jim can offer advice from someone who has been there and who knows protocols and who has seen hep c'ers come and go.  He gained my respect very quickly.

Mremeet I also see as a sharp guy.  He may be more like me in terms of a treat at all costs approach, but my treat at all costs approach has been tempered certainly by one question, which I think is valuable.  What is different about this treatment than the last treatment you tried.  

Because I am converted to the unalienable fact that if you have not SVR'd previously, you are not going to SVR on the same tx that failed before.  You have to have a new tx that offers some reasonable chance of success based on one of these following factors or what is the point of putting your body through it.  I call it the "harder, longer, other," quotient.  Which of these things is being manipulated in the new treatment?  Is it harder, meaning a higher dose, longer, meaning more time, or other, meaning something added to the combo, (a different form of interferon, same interferon/riba combo, but alinia or another drug added in), or a mixture of the three?

If I don't go UND by week 12, that will be my next consideration in how to proceed - what is the new tx being discussed and in what way is it different from the one I've already tried in the context of being harder/longer/other.

[Forseegood]

who the alcohol nazi's are? do they have the same zippy uniforms? this thread is a trip...

[merryBe]

ala-like yer thinking girl.

foreseegood,
after I saw the stats/charts for the progression of the disease with or without alcohol/maijuana use it's be hard not to click your heels, suit up and sign on. They got my attention. 10 times faster progression of disease, miniscule chance of SVR while using them.....who but a true alcoholic or roach head..... who would continue to go there besides a addict, fatalist, or one with a death wish.

Like HI, here's a drink/drug that will kill you ten times faster...so who wants to sigh up for it !!!!?
I don't think sharing a rare chardonay with a long lost friend is even is worth another cubic centimenter of my liver turning to rock....learning to find joy without substances nececcary is part of growing up.....besides, its just common sense.

[CockSparrow]

Think the Alcohol Nazi uniform consists of the word Alcohol written inside a Red Circle with a slash thru it. Not that zippy really.
CS

[DSCVG]

Thanks for the comments. Jim, I will be seeing a Dr Patel.
Yes, I will be asking all kinds of "what is's" & "what are's" & Why & Why not, before going on a 4th med - believe me.
Regards,  V

[Forseegood]

I like your interpretation of what an "alcohol nazi" is much better, then I believe was intended...leave it to another member to soften blows, etc...and make them humorous, love your posts btw, whether I agree with them or not, they are interesting as heck!

[mikesimon]

There must be an election coming up. I don't know the date or the office but the slate is easy enough to figure out. Mike

[PSP-n-Me]

:)

[CockSparrow]

Your knowledge of international Politics is very good. Theres an election happening in Aust.
CS

[CockSparrow]

Wouldnt be much point to this forum if we all agreed with each other all the time.
Part of joy of participateing is that it makes you think.
Its a bit of a pity that the Alcohol threads get a little toooo interesting sometimes.
But at least no can say there isnt any passion.
CS

[EarthMan]

Posted by JimJim

PSP: beware of a wolf in a sheep skin is my last coment on this subject -
--------------------------------------------------------
Are you referring to the fact that this is your THIRD screen name on Med Help, because Med Help booted you off before for similar ad hominem attacks? And don't try the "I was defending you" bit because the reason you got thrown off the first time was for mouthing off to administration in a very public manner.


Boy does Jim have this Chick down pat. Everywhere she goes with that big mouth of hers, can't help but get her in trouble. You need to take some Chill Pills Lady!! Veggie doesn't have to be on treatment to have a tantrum. She is like that on the Natch. LMAO I've known this broad for years now and she really does have some serious mental issues. So for the ones who do not already know, beware!!

Oh, and Veggie apologize to Jim? or anyone for that matter? Don't hold your breath.

EarthMan

[merryBe]

well, been accused of lots of things, but never nazi before....does someone miss their brewskys???

chuckle, well so be it,

I guess perspective is everything, attend at the death bed of a couple folks who went from this, and you are never quite the same.

for the record, I never got the idea from anyone "not" to treat at stage 3 or 4....

It's hard to know exactly how to word things anyway, but's it's good that each person has their own voice, some calm and steady generals, some more sargents in yer face private!!
thank God there are even people willing to take the time, however apt/funny or not/informed they may be or not.
It's all acts of love, or attempts on some level.

I guess when people share their symptoms we all presume a newbie will either have the intelligence to read more than one response, horror story, or explaination before reaching conclusions one way or the other because there's way too much at stake for that knee jerk of a response.

Something tells me that most incapable of processing would not be seeking out this kind of forum for answers much anyway...(except for the occasional jerk off artist who breaks the monotony of disease dialouge with his comin' on the bobbies tales....at least there's that...)

[DSCVG]

I wrote here to try to get input from numerous people with various treatment experiences that might offer different points of view.  All views are read and then weighed as to pertaining to my situation.

Quite frankly, I am very surprised with all the back & forth "squabbling & bickering"!  Everyone is entitled to post their trtmnt & reactions, etc - I believe "it's ok" to do that ... doesnt have to be The Only View; just another one.

Supposedly we are all fighting Hep C, so why not agree to allow others their input without attacking each other ... then that person feels the need to "retaliate" in writing; and on, and on, and on?

Personally, I read them all, looking for possibilities and would appreciate if everyone could kinda not take thins as a personal affront from another person's thoughts.  I believe we are all adults fighting similar wars.  On the 7th I am being flown, to NC, by Angelflight, to be seen by Dr Keyur Patel at Duke for the Fibroscan / Liver slides evaluation - I never would have known anything about this if it had not been mentioned by someone on this forum.  Thgank You, whomever you are.  Night to all.
Vincent

[merryBe]

4CGD-  of course I did start the whole idea.......grin...thanks for the comp. though, luvu2
still, it coulda been dorothy's slippers I was referrenceing.......grin...
oh to heck with it....who doesn't say "sig heil" when their life depends on it...and this coming from a jew.......well now pilgrim...how does ya spell dilemnas?



on a more serious note: this is the first time in 10 years any forum has ever shocked me.
with all due respect to PSP.....is that what you are taking dude????? elephant tranquilizer ah hence the handle?

how do any in here help the many while not jeopardizing the infomationally challenged anyway!?!
or, now to disagree with you is to be a puppet.....get real....it's almost like,
I can't imagine any one piece of advice, doctor or otherwise, being the sole source of anyone's treatment choices.
Not in a day and age when a plethora of opinions is at the fingertips.

i've only been in here for a short time, read endlessly, never saw much of anything that wasn't well thought out, never saw but one Lamo still hugging his bottle, and it was't Jim.

still we do live in an age where some will spend more time deciding which latte to buy than what chemo therapy is best. rolleyes....Maybe that's not you, maybe when the verdict was still out on the efficacy your stage and circumstances made you want to wait. Or maybe you just freaked, it's been known to happen!!!

I think fear is a very compelling emotion, and it's one every person that ever came in here and tried to face this disease has had to deal with. we go away, we cry, we come back and we learn more.
that's what it means to face life head on....to not let fear paralyize us.
Sometimes, we don't win those battles, sometimes we run for cover....we saw another guy shot and bleeding...that's what war's do, and like it or not we are in one.
but that doesn't mean the war is over, you still have your own gun, your own mind, and because someone else took some metal doesn't mean you will.

So again, with all due respect cause it's never easy for any of us, but I just can't imagine that anyone can blame one persons examples for their own decison, or fear, or lack of voracity to search out a subject.
Besides which no mitigating circumstances of other life challenged were divulged in the accusayion, like family/finance/etc all of which play in whether we acknowledge that outloud or not.... and where was your actual medical advice????

it almost sounds like "anything wrong in my life is now the fault of one else".
that may not be tthe way you ment it, but as you can see by reactions a lot of people thought you were going there. I hope for your sake we're wrong about this.

[merryBe]

wanted to address your horror story, so sorry to hear, and many similars. the thing I wonder is did you ever stop to consider that maybe the hep was destroying nerves cia the route of your bodies own interferon before tx, and then that neuropathy is a side of diebetes.
I'm convinced no one should even be on tx without monitoring that, but also, something has been causing my brain to go all white spots, and peripheral damage even before discovery or tx of the hep C. Just saying, it can all be cumulative, and yes, I've been bedridden for 5 yrs, so not a fun time.
not saying any of it lightly. But it's kinda hard to know that the virus in it's 30-40th year would not have caused all of that on it's own...because due to one dumber than dirt GP I had to take educated guesses for years to get to diagnosis with no grey cells working on her end...and by the time I did, spleen was also very enlerged cause the body fights to live....just saying....it may be that in early stages one bounces back, but for most we the age where that's not so easy and more damage than we realize has already been done.
Are you hopefully controling blood sugars and reading up on neuropathy, the sudden onset makes me wonder why and if you've had brain scans regarding it all.

[PSP-n-Me]

yawn

[burned74]

First, I think we all need to thank jmjm and mrmeet for all the time they have spent on this forum helping other human beings with hepc. I think that their disagreement and  spirited but civil discussion itself was enlightening.
Back to the original question. Since DSCVG has treated 3 times already with an interferon based product, would treating again with an interferon based product reduce the chances of clearing in the future. In other words, would the virus in his body build up still more resistance to interfereon so that when another drug , (maybe teleprevir alinia or something else) becomes available and he treats with that drug plus interfereon, he will have used his interfereon opportunity already.
Any studies about how long would it take for the virus to revert to its wild form after interferon treatment?

Lastly a question for jmjm. I see where you cleared your own virus by increased doses of riba. Was this treatment approved by your hep doctor? Are the top hepdocs able to give their patiemts something more than the SOC?

[mikesimon]

First I want to thank you for pointing out that we should thank Jim and mremeet. That was very instructive. Thank you burned. Mike

[jmjm530]

Thanks for nice words. Yes, my increased doses of ribavirin (only very early in treatment) were approved by my liver specialist, as was my initial double-dosing, and the extension from 48 to 54 weeks. These are very powerful drugs and important your doctor is always onboard. Don't really have an answer to your first question, but my concern had more to do with the fact that interferon-only based treatment had failed DSCVG three times previously.

All the best,

-- Jim

[mikesimon]

If the question is about resistance I have never seen a study that suggests that treatment can result in resistance. If you have seen something that suggests or concludes this could you post it for me. Thanks, Mike

[jmjm530]

You misread my post. I was not referring to resistance at all (i.e. first question) , and my understanding is the same as yours.

[burned74]

I have not seen a study about resistance one way or the other. i was wondering if anyone else had knowledge of such a study.

most everyone knows that the chance of success with retreatment is very low. in my own situation, my VL went down from 10 million to 400K at 12 weeks but then increased to 1 million so I stopped treatment at 24 weeks.

I am assuming that the virus that remained in my body was resistant at that time (3 years ago). Is the virus that is there now (or 2 or 3 years from now) resistant to interferon?

If that were the case,it might be near impossible for retreatment with peg and riba to work now and it just might inhibit the chances of future success.

[mikesimon]

I treated with low dose ribavirin and standard dose regular interferon for a year and didn't clear. I treated again with a higher but inadequate dose of ribavirin and standard dose of Peg-Intron for 53 weeks and cleared late and relapsed. I treated again with a higher and adequate ribavirin dose and standard dose Pegasys for 73 weeks cleared at week 12 and have been SVR since 2004. Mike

[nygirl7]

Just goes to show how important it is to get that riba dose right and not skimp on it as much as that stinks.  More and more I am seeing how crucial the riba really and truly is, when I first started to treat it was something that I took on faith but didn't really understand.

[mikesimon]

I agree. Though Pegasys was a lot easier for me to tolerate I don't believe that the change from Peg-Intron was a factor. I really don't know that the extended treatment was crucial either but, at the time, I felt it gave me the best shot. Looking back on it I think that the ribavirin dose might have been the deciding factor in my response. Mike

[Myown]

As far as the riba, I'm wondering if anemia early on is a good sign, as some tend to believe - saturation etc...I'm also wondering if I should change interferons tho my doc said no, stay the same (pegasys) and he leans towards longer tx should do it. But also,,,going the 48 and knowing I didn't have sx from pegasys makes me want to stay with pegaysys,but maybe I wouldn't get sx from pegintron either and the smaller molecule that the pegintron has is something that has me interested so I don't know which way I want to go. Flip a coin I guess.

I wonder if they ever let a person do half the tx time with pegasys and last half pegintron. Well I'll be going for a 2nd opinion so I'll see what this doc says and weigh it all.

[gauf]

Hello conservative pal. I did pegasys on my 1st tox. and pegintron on my 2nd tox. My 6 mos pcr on pegasys was 250,000. My 6 mos pcr on the pegintron was 4 million!  Round 3 will be back to pegasys for me.

[nygirl7]

All I know is I upped my riba pretty drastically and suffered just as drastically back from the anemia - in fact I almost didn't make it thru the first two months.

I wouldn't worry about not having side effects - if you're gonna do treatment just do treatment.  If you already tried the pegasys I'd try upping the riba and going with the Intron...why not?  You know how it went the first time, maybe this time it'd be like a miracle (although honestly I dont think it makes a difference which one but does greatly matter to get the riba correct, don't let them make you skimp...no matter what).

[Myown]

Hey gauf, high 5 tuhya!  Maybe we will be starting at the same time, we can count down the weeks together as we go along. That would be good.

NYgirl,
yeah the last time it was weight based, but I don't know the doc thinks longer tx may be the answer, but I'm getting another opinion and may even tx at the place I get the 2nd opinion so I'll see. Starting all over again, yuk, but I shouldn't complain so many others have gone down this road over and over again.

[DSCVG]

My vir load as of yesterday has gone to  25, 785, 00.  Does anyone know if there is a way to get that to drop?  Two of the trtmnts did drop it when it was down in the ten million range - but only for a while.  Any input would be great.  Thanks,  V

[Lady Lauri]

  At the risk of starting another debate.....as your not in tx right now.....milk thistle. Try it. It DID do a lot for me for a few mths. that I did it and had to stop 30 days before tx.

My VL while on milk thistle.....   812,000
My VL after stopping 30 days.....4,430,000

google it, it helps the liver function/process, which our livers need help! It is being recognized in the medical world more now as helpful with Hep/liver.

                                                                                        LL