How much time

[RonDougherty]

I am on the border of f3 and f4. g type 1 and failed the treatment after 6 months. The viral load went from 3 mil to 3 thousand the all of a sudden it went back to 3 mill. The hep c also went from the end of f2 the the end of f3 in one year. I have had hep c for 30 years. Will it progress through f4 fast now. I know you can only guess.

[nygirl7]

Ron,

I'm not implying otherwise, but this time make sure you have the best most busy heptologist that you can find - you'd be surprised at how many of us treated with doctors who knew less than we did and hadn't even bothered to keep up with all the latest studies that are out there that make a HUGE difference.

Learning everything you possibly can helps you to make better decisions that usually lead to a better outcome (my own doctor did not know about extending my treatment to 72 weeks (for example) but I had learned about it in here when it was brand new so I went to one of the worlds leading hep docs to get a second opinion - he is the one who allowed me to continue onwards, without it and the knowledge from the forum I probably would not be cured for three years now.)

I wish one of us had a crystal ball and could give you all the answers but like the others guys I think 100% in the end - as unfair as it is - it's our responsibility to monitor our doctors treatment of our bodies and their decisions.

It's just a lesson a lot of us learned while in here and thank God we did.

BEST orf luck.

[RonDougherty]

You guys are all great. I'm glad I found this site

[GrandOak]

I was diagnosed 5 years ago as G1a grade 0 stage 4 and did 10 months of Tx 4 years ago to no avail (VL went from 94 mil to 1.4 mil before rising back to 4 mil at end).  For me it's been regular checkups each 6 months with annual CT, Endoscopy, etc. to stay ahead of curve should progression commence.  During that time, my state as remained compensated, and even improved as MELD score has dropped to near normal with all other blood tests being near normal on all counts.

As stated, there are options to re-treat, but I would advise you have a good healthy relationship with your doctor in order to discuss the pros and cons of doing so before jumping into anything as they know your situation better than anyone.

One downside of trials is often not knowing or controling which arm you get placed.  So you could wind up in a control arm receiving a placebo and consequently not gaining any thing beyond current standardized treatment.

In some cases it may perhaps be even less if they drop any or both of the current meds to test new med against the current Tx to determine if it replaces any of the existing meds or stands on it's own right.  Albeit, most trials these days do appear to be geared towards augmenting current therapy medication, so the chances of not receiving any of the existing meds or having one of them dropped is not very likely.

The other risk is that since virus already has demonstrated a resistance to current Tx meds, that introducing newones may result in increasing resistance, or worse mutation which renders existing meds to be less effective.  I think this is why most trials only want Tx naive participants until last leg, coupled with a better means of measuring new drug with respect to existing meds before seeing if it improves odds for those who have already demonstrated a resistance to existing Tx.

Being in a similar position, I realize it is not promising position to be in and can empathize with concerns of what lies in store.  Being stage 4 already, it sounds like you may actually be in a bit better position than I.  

But as you've said, it's all for the most part a guessing game at this point and no one really can say what, when, or how fast situations may change.  Granted it's becoming more of an educated guessing game as more is learned, but still in the end highly unpredictable.

All I would suggest at this point is that if you do not feel you currently have a doctor who is keeping atop the testing and advancements being attempted in treating this insideous disease, then see if you can team up with one who is in order to be able to have a more informative exchange on what to do next and when to do it.

More often than not, it is a team effort and unfortunately we seems to always end up being the ones that ultimately must make the choice.

[WriteItDown]

I also want to add that, IMHO, if you can, you are better off retreating as soon as possible, before you progress any further. Treating earlier will give you a better chance of clearing, and that way, if you did happen to be one of the unlucky people who would progress rapidly, it won't matter.

Stick around and let us know how we can help.

[Bill1954]

Hi Ron,

Yeah, there’s just a lot of c@p involved; and if you go in armed with knowledge, you should be able to advocate more effectively for yourself. It’s not like going to the doctor with a broken arm, where they tell you what has to happen, and you’re done. With HCV, you’ll find you’re given lots of options to consider; hopefully they’ll offer guidance as well :o). I feel I was able to provide fairly intelligent input to the management process; this made it easier for me, as well as my medical team.

Another invaluable page is here in Medhelp; you can also find it on this page under ‘most viewed health pages’ in the right hand column of this page. It lists the abbreviations used so frequently in here:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Be sure to cruise through Janis and Friends; it’ll give you a good base to work from. Take care, and keep in touch—

Bill

[RonDougherty]

Thanks for the welcome Bill. At first i said who needs a support group? It's really starting to set in now.

[Bill1954]

Welcome to the discussion group. There’s a pretty good site for general HCV knowledge called Janis and Friends; if you haven’t seen it, it’d be a good idea to give it a once over:

http://janis7hepc.com/

Here’s a link to their page on cirrhosis too:

http://janis7hepc.com/Cirrhosis.htm

Click on any topic of interest in right hand column under ‘other HCV information’, and save the homepage to favorites for future reference.

Best of luck to you—

Bill

[RonDougherty]

Thank you. I suppose there is no answer as to how long it takes. I'll check out the site

[WriteItDown]

Unfortunately there is no way to tell how fast you will progress.  However, my advice would be to retreat with one of the new drugs (triple therapy), either a protease or a polymerase inhibitor. In your position I would seek a clinical trial so as not to have to wait for Telaprevir and  Boceprevir to be approved by the FDA.

My husband is just finishing up a clinical trial of TMC435 for treatment-naive patients, but they are recruiting now for a trial for people who have failed previous treatment.  You would have a 6 out of 7 chance of getting the trial drug, a protease inhibitor. There are 4 trial locations in Florida.  Here's the link:

http://www.clinicaltrials.gov/ct2/show/study/NCT00980330?term=tmc435&show_locs=Y#locn

I imagine there are also other possibilities out there. I would ask the doc about it.

Best of luck to you!