Retreat or not?

Retreat or not?  It

[friole]

Here

[FlGuy]

Tough call. For me it would hinge a lot on the re-read of the original bx to reaffirm the stage. If validated, back for a bx this time next year and run the logic again to determine any change. That will get you through another tax season.  37 years and stage 1, that's pretty good.  If she is 'SOC' like you said,  you've been there -done that, nothing to be gained, except mabe be longer.  Still no guarantee 72 is better than 56 or 52 weeks at und is better than 36 at und.  VX people have written about the mandatory clininc visits within very tight timeframes, 350 miles frequently - those are major frequent jaunts.  I realize that you want it 'gone' and that's a motivator, but seems like there are limitations to choices, which is not really a bad thing.  I think I'd chill til next year and take another look.  Unless you are planning to move and geography could change the perspective and choices.

[mikesimon]

Just refresh my memory regarding genotype, type of peg and dose, ribavirin dose and your weight. Mike

[zazza]

I have been wondering how your appointment with the hepatologist went. Thank you for sharing your visit with us. My thoughts are with you.

I agree with you that to retreat I would also want a different protocol. If 72 weeks does not work for me, I will wait for VX950 or some other new drug to be approved. Strange that the hepatologist wasn't into tailoring treatment, I am under the impression that this is what is coming more and more.

But... we are responders, even if slow, and as such I am quite convinced that one day there will be a cure and SVR for us too.

[illo]

This sure can be a trying disease.  I do hope there is something out there soon for everyone that has HCV.  No magic bullets.  I wonder why she didn't suggest 72 wks.  Did you ask her difinitively 'why'?

[friole]

Thanks for responding. Stage 1 at maybe 37 years gives me pause too.  Seems like me and my 3,500,000 friends may just have to live together for awhile. (she said the same thing  - that I will not die of liver disease---- then gave me the pitch about the colonoscopy ---- what's with these guys?)

Southwest has some cheap flights to Dallas, and after a $25 cab fare to the hospital, I talked to locals and found my way back to the airpost on the bus system  (for $2.25).  I am an old city rat anyway -- I may have lived the last 20+ years in a town without a bus system, but I wasn't raised that way.  Heck - I didn't even get a driver's license until I was 28.  I had learners permits in 5 states before I ever got a license.  But I digress....

It would have to be a study I could really get behind before I made that kind of committement but it is possible.  I even have a client in Dallas I could visit more often.

Still, I am not willing to fall asleep on the couch every evening for the rest of my life.  I want to be active to the bitter end, which I hope is a long long way off. So, I hope that I can see when this disease starts impacting my life and take action .

How is treatment feeling lately, FL?

[jmjm530]

You probably already know where I stand and it's with your current doctor who is recommending waiting for something to add to the SOC mix for better viral response. As a stage 1, unless your biopsy jumps up two stages, that's where I'd end up. That said, if you're anxious to treat, "Prove III" is an option if you can get in. Of course we don't know how it will pan out, but optimistic projections are for the half the treatment time (24 weeks) for geno 1's with close to double the rate of SVR (80%). But if it were me, I'd wait beyond the trials to evaluate the results as well as my liver condition. Treatments will only get better as time goes by and IMO future SVR rates will often trump any possible decline in SVR due to waiting. As to it being the ribavirin that let you down, she may indeed be right but I wouldn't be the farm on it, just not enough information on why some people relapse and why others don't. I assume you were on weight-based ribavirin throughout treatment and were compliant.

All the best with your decision.

-- Jim

[jmjm530]

I'll just add to the last statement, that while you were a "responder" as stated by your doctor, you were a slow responder by some current viral load standards in that the virus hung around at lower levels after week 12. Therefore, one might argue that the Peg also let you down and double-dosing protocols per the Clinical Options site teaching modules could have brought you non-detectible earlier. I'm by no means suggesting double dosing in your case, just commenting on your past treatment. As promising as double-dosing seems to be, nothing appears to bring the virus to non-detectible faster than Telaprevir combined with the SOC drugs.

-- Jim

[friole]

Mike -- I was am 1a, did the standard Pegasys dose (what is that -180 something units) and 1200mg  ribavirin (which was the right dose for my weight going in - 173 pounds -- I lost down to about 153 at one point and never reduced dose). I was anemic for the duration, but do wonder  (now) if I could have withstood a higher dose.

Jim -- yes, I do know your position very well.  However, you are now on the other side of the fence.  Remember how many years you were on this side and wanted to be done with it?  That is how I feel.    I was rather disapointed in her lack of concern with the 4 week viral load.  I  kept pressing her on the issue of clearing as soon as possible with weekly PCRs and she turned a deaf ear.  I will keep looking for my dream hepatologist, but at least I have a hepatologist now, not just a GI.

zazza - can't remember your liver damage but it sounds like we are like minded.  I will watch for your posts in the coming months.

There are so many other manifestations of this disease besides liver damage.  Both the NP and the doctor asked about joint pain - specifically joint.  Can't say I have experienced that to a large degree, but I do have concerns about pulmonary issues - inflammatin and such -- and hep C and have read several articles expressing the connection.  So just because I am stage 1 doesn't mean there aren't or won't be issues to watch for.

frijole

[mikesimon]

I don't see a reason to retreat. It could do your liver some good but I can't see any different outcome vis a vis SVR. Good luck, Mike

[zazza]

I posted below on my doctor's appointment today: "Doc approved 72 weeks". Yes, it is good to have like minded fellow travelers on this road.

[Tallahassee]

Difficult decision

[jmjm530]

Friole: However, you are now on the other side of the fence. Remember how many years you were on this side and wanted to be done with it? That is how I feel.
========================
First, I fully understand how much you and others want "to be done with it" and no doubt that is an important part of the decision making process.

But just to clarify your above statement, in my case I had no rush whatsoever to "be done with it".

From the very first time my liver specialist told me about interferon-based treatments, I decided to put it off as long as possible, and frankly never gave treatment any thought until my most recent biopsy showed me between stages 3 and 4.

And while I'm certainly not recommending this to anyone else, I waited THREE years after the 3-4 to treat, and never even joined a discussion group like this until after I started treating.

I mention this because I've been accused -- not by you -- of using two standards regarding treatment. A standard for me and a standard for others. My opinion/ standard has always been consistent for geno 1's -- treat if you have significant liver damage, wait it you don't. Whether that standard makes sense for you and others is one issue, but it's certainly a standard I've lived by it myself.

All the best,

-- Jim

[mkeela]

UGH!!! I can't imagine the dilemma your in right now. If it was me, I would wait QUITE some time before retreating, or even treating at all again given the mild damage...not to mention all the anemia and icky blood stuff you went through. I have a question for ya'll, what exactly is maintenance therepy? Is that any kind of option for you? Just curious. Love ya friole, and tell that depression to GET AWAY FROM YOU...ICK!                  -Mequila

[sunspot]

Hi girl.
I don't have anything to add to the replys above but I wanted to say HI and I've been thinking of you.
P.S. why would a Hep doc want to check your Butt? Why do the drive through ATM's have Braille on the keyboards?

[nygirl7]

Well as you know, I very well am thinking I"m in the exact same boat as you but have no word yet.

So, you know I've thought about this with the obsession only a hepper can mustar up.

My question is - why is she so sure it is the riba that let you down? I can only look at my own case where I was taking WAY too much riba and it destroyed my rbc's and I had a 6 point drop in 10 days - BUT no UND at that time.  You'd think with all that riba in my system that in those first 12 weeks (when I was sometimes doing 1600 a day) I would have killed off everything possible. Still yet I wasn't UND until somewhere after that.

That's why I wonder - I had about as much riba working inside (and I do take the drastic anemia as a sign it was working, even though there is no scientific backup I guess) as any human being could.  But still...........well you know the rest.

I am thinking that if the Infergen is a bit stronger it will KILL the mutants that were still roaming around. My understanding is if it killed them then I wouldn't be as desperate for the riba to do the job because quite simply...they wouldn't be there to replicate?

And with a daily shot versus a weekly shot - you'd have a pretty constant barrage of killers getting in there and not much chance for an break to let a few escape and replicate.

I know it doesn't help you but my insane "video game" mentality is the only way I can picture it in my head. I'm not the most scientific person...or the smartest...but you know I care. Big time.

I understand wanting it out desperately and even after I've gotten SVR sometime I will never forget why people are so desperate to want it. You have my word.

Write me anytime you want at all and if you want to talk...real time...I'll zip you over my phone.

It looks like we'll be around together for the long haul - and that is good at least we'll have someone to get it.

(Yes of course I don't know if I relapsed - I'm not being negative should anyone think so...but I do understand that my doctor said inconclusive and wierd but I saw "positive" even if he didn't so I'm trying to be practical instead).

I'll know late next Monday afternoon for good anyway and that will be something :)

Friole in the meantime if you find a miracle cure...be sure to let me know, ok?

Your pal and combatant in HepWorld,
Debby

[Tater-ToT]

Just popping in again real quick & was looking for your post... so I haven't read all your replies yet, because I wanted to give you my GUT INSTINCT before I let outside influences spark or trigger thoughts that I may not have considered yet... Soooo, I am Liable to change my tune in some degree of my reasoning process!

My GUT Say NO... WAIT!!!!!

Okay Reason being behind my thought process is:
One I can understand it being the Riba... I too was a responder (Slow to a degree) which meant I should have extended in the first dang place... but I was under dosed on that first round on my Riba & 800 for the entire course of the TX (which might of been WHY I was also a slow responder) I was not clear by the 12 wk mile marker, but was by the next PCR at 24)

Now Granite I was a skinny Minne back then when I started, & even lost nearly half my body weight on TX & got down to 86 lbs.... so maybe In the overall the 800 could have been right considering my weight half way thru TX!

Okay well next:
I jumped immediately back on that bandwagon upon news of my relapse... there was a method to my madness, & my idea was (In My Mind) knowing that I was under dosed & not allowed to extend.... to hurry up & get started again while I had the virus wounded & at bay.... the lower the VL, the better right... plus not giving it time to replicate into something more resistant!

Now again Granite we don't actually know yet that I am indeed SVR... I think we can safely assume that I am... & plus I was undetectable by week 12 on the second round.... however the goal was that I go the 72 weeks, & then due to my insurance snafu, I was very fortunate to obtain the 60 or 62 weeks worth that I did!

So we Are indeed responders... but my concern for you is TIME... soooo much time has passed, plus we have all this newer stuff available in the near future!

Had you immediately restarted, I'd of said Heck Yes, Go For it.... but I see that as no advantage at this point, plus look at how far you'd have to drive this time... & don't forget what a pain it is to get back & fourth to appointments & labs when they are close by!

Also without the significant damage... you have the option of waiting, & if they are not offering to extend ect & sticking to SOC protocal... I see no real advantage of putting yourself thru this again!

I know that was long winded (as usual) but I hope you can see where I am coming from... especially since I have never been one whom ever recommended the watch & wait  to anybody till I started looking at how things are changing when finishing TX last year.. but If I did or where to happen to relapse I would NOT treat under the same protocol.. & that's even if that option where made available to me on a Silver Platter... I'd be afraid after a grand total of over 100 weeks on that stuff, then a year off, that it would be harder than ever to get rid of... I'd probably be resistant!

Anyway, my heart really pours out to you, & I can understand your uneasiness about all this, but That's what My GUT says.... So Know I'll go read your other replies!

[Tater-ToT]

Ahh Bean,
I guess I wasn't that far off, although there may have been different reasoning...
Just wish I could have summed it up as beautifully as others...

Sounds like you got some great advice from the ones that make more sence than I...LoL...

Hang in there Lady... You're in my thoughts & prayers!

I have to tell you that not a day goes by that I don't think of you & the others in here... I honestly Treasure & Value "All" our friendships & Aquaintances.... we've all been thru sooo much, & I am a better person for having gone thru all this mess with such a great bunch of folks!

I have really missed you, & when & If You DO Absolutely decide to retreat... I'll always be here for ya... I might not have much medical advise to share... but maybe I might could help crack a smile or two!
;)

[friole]

Hey sunspot - she doesn't want to do the colonoscopy - just thinks we should all get one...........  Have you had yours???  There must be some new memo out to push those.

Jim - interesting that you sat the fence for 3 years after the 3/4 diagnosis. You indeed have been consistent.  I think you know my position too .  I believe you should give it a shot, most especially if you are past a grade 1. I do believe you should treat when you are healthy and the younger the better.  I do not believe in retreating under the same protocols, and maybe not at all at my stage.  But and ESPECIALLY if you are cirrhotic or near cirrhotic you must retreat.  In those cases it makes sense to take greater risks.  Remember, treatment was not too bad for me -- not that I am dying to do it again, but I could.

NY - I sure wish you would get that test run.  Won't it be funny if you are clear?  By the time you get it done, you will hve an ulcer with the worrying. I think the Hep doc threw around a 40% chance with infergen -- maybe even less - cant find my notes right now.   I do think she is wrong about knocking it out fast.

Tator - glad to see you popping by.  Always glad to get your opinion - a fellow low stager who treated and retreated and beat it!  Go get that PCR, girl, I want confirmation.  That Riba was nasty but I suppose I could handle it some more if I have to..  I think you reached a critical anemia stage -- probably becasue of your weight.  Don't think I was ever there.

bean

[Forseegood]

hi, remember a member you got on with quite well? 2Irish, unfortunatley, she relapsed too...Fortunately though, she's a stage 1 like you, and she probably did her liver some good by treating, but a second time? with soc? right now?...

I just hope some better things come down the pike for the both of you...Maybe I'm in Jim's school of thought, there are better things coming down the pike...my doc told me to get on something better and that I could afford to wait a little, (I have really good labs, viral load never over 200,000) or I'm looking to trial something out now...best of luck with whatever you decide to do, I just think we are all our own masters here, and we can get advice from fellow travelers, but ultimately, it's going to be our own decisions along with our doctors...I'm just glad youre not in some higher stage...very glad...

[goldyn]

Well frolie I would wait a little longer to see when the new tx is coming out , you were on 2 rescue drugs , i think, and with your low liver damage, its a tuff call but i know you will wiegh each side, i also can understand how you want to  not  be tired all the time ....
                       God Bless
                                           Goldyn

[spcecst2]

Double dose is not only option!http://www.hivandhepatitis.com/2006icr/aasld/docs/110706_e.html

[motheroffour]

Hi all, all this colonoscopy talk!  Our doc told my husband since it appeared he was going to live longer than 5 years he might as well get one.  Wonderful.  I'm so interested in what you all decide and what happens.  You all started treatment at the time my husband was diagnosed.  He had a long 6 months before he actually started tx so he's got about 12 weeks to go to 48.  He was a sloooow responder, wasn't UND until about 26 or 27 by Hetimax and  was undetected at about 30 weeks sooooo, I'll keep you posted, but interested in all the decisions that get made.  My H was a probable stage 4...but I looked back at his bx and they only took 2 samples which seems like not much so who knows - he's either a 3 or he's a very real 4 depending on whether you're a half full or half empty person I guess.  He's stopping at 48.  His decision, so we'll see what happens.  What do you all recommend for post treatment PCRs?  Does it show up that fast that it would show up at 1 month?

[orleans]

no way, not me-jm ps i envy your liver

[Bill1954]

Aww, Kathy;

There are so many unknowns about this disease and its concomitant treatment. My gut says the desicion plays out quite simply: can you peacefully coexist with the virus? If so, I just don

[Bill1954]

I forgot to mention that whatever you decide, I

[Bill1954]

Hey Vicki!!

Those were some thoughtful words you had for our pal Kathy. I just wanted to let you know that I miss you in here; great to see you post again.

Where is the world is Matt Lauer (oops, I mean Vicki ;)). Still in WA, or chumming for 'squitoes up north, maybe? Last we talked, a trip back to AK was a possibility. I think you mentioned a village, to boot. Also, how's  grandma-ing business going?

If you get a moment, I

[wyntre9]

So sorry, Friole to hear you're faced with this decision.

it stinks!

You're a responder-relapser?  Isn't that an oxymoron?

But I wish you the best in whatever you decide.

I have learned so much from you and others (I'm a slow responder, too - UND at week 16-18, now on week 20) and it's coz of this forum that I have even a clue about what to look out for in TX.

Hope you feel better,

Wyntre

[GoofyDad]

Hey friole - where have you bean, woman? (a touch of my famous legume humor to brighten you day)

I think Bill said it perfectly - it becomes a question of whather your QOL is significanly diminished by either knowing you have the virus or the lifestyle restrictions that it places? If not - I'd hang up the gloves and focus on enjoying life and counting the frijoles. Better treatment options are in the wind - so why push it....

There's my 2 cents.

[Tater-ToT]

LoL...
I got an e-mail last week entitled "Where In The World Is Carmen San Diago"...LoL .... I Like Matt Lauer ... seems more appropriate for a time, however with the grandson, my travels have been somewhat restricted!

I miss you too, I hope TX is being kind,.... you seem in such "good spirits"... but then again you always do... you're like a breath of fresh air!!! Ahhh!!!

Grandson is doing Great & Keeps me Entertained... he's quite the little ham, & my pride & joy..... He weighs darn near 30 lbs now, & finally in the 50 percentile for all babies... when I got him... he wasn't even on the charts... so he's especially THRIVING  considering he came into this world 7 weeks early & come quite a long ways from the 4lb 11oz peanut he used to be!

We're still in WA. & No Intended Offense to Native "Washingtonians" (SP) but This Place SUX... I HATE This State... I mean it's Pretty & Green, & Lots to see & take in... but Geez... It rains from the end of October & doesn't start slacking off the first of May... YUCK!  Only had two days so far that I could get into the yard with a Tank Top & Shorts on, still in the upper 30's at night..

I Like Cold... but Not This ****... I'd Rather be back up in Alaska... (I left my heart there), & there is a constant yearning to return!

Just think, IF I were in Alaska, then next month I would be enjoying the summer solstice & the 24 hour sun.... feeling energized & enjoying Midnight Mowing, Giant Vegetables, & Fishing, & Hiking, & taking pictures of wildlife, & enjoying all the moose spottings... Ahhhhh, but I like the Winter Solstice too ... I just find something about standing on a glacier watching an awesome Aurora Borealis... Rather Romantic...LoL.....{{{Sigh}}}

Okay, back to earth....

The project in the village (Delta Junction) was a small one which needed to be Done immediately... so they sent another representative there yesterday...Darn It (my better half is committed to this project thru May 2008) so we weren't available...However a bigger job (Which is better & will require a longer stay) should be opening up in Fairbanks... we are just hoping it don't get approved till next year... I would happily live in Fairbanks! My better half has A fishing trip scheduled for the end of July, first of August (but I don't get to go)... however I do get to buy a deep freezer for our garage & enjoy the Halibut, & Salmon he ships home (for the rest of the year)... Hopefully some shrimp too... so that'll be like a little taste of Home...

Okay... Wait... I'm on a Roll....back to Never Never Land for a moment... I like it out there...Tee Hee..

To me Home is where the heart is... & my heart is only truly happy in two places (both opposite ends of the spectrum)... I either want to Live in Alaska, or the Florida Keys..  I could just as easily be happy watching the sunset & watching for the "GREEN Flash" & trying to capture it on film...going out in my boat everyday catching fish... growing a year round garden, walk down my private beach..LoL....(preferably I'd have a home in BOTH, & go back & Fourth)....but I realize that is really REACHING!!!!

But Hey A Gal Can Dream Right!!!!

Actually, although there is an extreme difference in temperature... there is a common denominator .....It's the cultures, the atmosphere, & the people... they are BOTH just kind of" Laid Back" .. & God Knows, I prefer to be a simple laid back kind of gal...

I hate traffic, I am not a suburbanite, I detest keeping up with the Jones's....
I am a home body & enjoy my privacy, & solitude...

I just want to garden, have a deep freezer... put up my own vegetables, go to the store OCCASIONALLY as an OUTING & have my own space & personalize it to my liking... I don't need a fancy smancy car, or the latest fashions...Its Society that forces all this other **** on me.. Ugg!

Wouldn't life be simpler If we could all just be free, & have enough SPACE that we could Run around Naked (or Clothed) "If" we wanted & Not have to worry about anyone seeing us... much less having to have the perfect the perfect body to impress anyone with... Ha!

Humm, Now HOW Do I find all that... guess I better start playing the lottery or something! I don't think it exist for us commoners... it's a commodity that only the rich & famous can enjoy... BUMMER... Cause I'm sure I'd appreciate it a whole heck of a lot More...LoL

Anyway... How's that for an Update... Ha!

Hang In There Bill... I Know You Will... I Hope Time will just FLY By & you will experiance Minimal sxs!
Vicki
;)
;)

[willing]

I can sure empathize with the difficulty of your decision..and am going to go along with the rest of the "not now" group. Why? It goes back to "first do no harm". Had you pressed your Dr. about why she thought the riba rather than the ifn had let you down  I'm certain you would have come the conclusion it was an informed guess on her part. No one on the planet has  exact knowledge regarding the anti-hcv mechanics of the SOC. Riba dates back to the pre-rational-design, "let's make this and then see what it does", school of pharma and its synergistic combination with ifn wasn't discovered until much later. Ifn is part of an ancient general anti-viral alarm system our species evolved. However, we were never evolutionarily prepared to handle having that alarm blaring at the level that corresponds to current soc dosage and duration. The point is that we not only don't know the specific anti-hcv effects of these drugs, and thus why they do or don't work, we also don't know the extent of the collateral damage. The fact that so many Drs are ready to drop dosage at the first sign of trouble and unwilling to extend tx underscores their insecurity in that regard. The collateral damage is real, though, as this forum makes clear, the extent varies a lot.

On the other hand we know exactly how vx-950 and nm-283 work and can expect that since those molecules are  specifically designed to target hcv they are less likely to have unintented effects (however the failure of biln-2061 is a warning in that regard). I can certainly understand wanting to get rid of this freeloader virus. The extra "tax" imposed by its presence seems to be weighing heavier as the years   pass (in particular the fatigue). On the other hand, if I had to put a number on the cost of my last, failed, soc tx, I'd say it aged me  by about 5 years.  As a 53-year old stage 2 I'm gambling that even if my last bx was off a stage, it's a safe bet that my liver can manage at least another 15 years without intervention. This is more than enough time for the current crop of drugs to mature.. (at least consider waiting to make your decision until the results of the first combined nm-283/vx-950 trials start to come in). Take good care..

[jmjm530]

Well said. BTW we could use your assistance with Hep B transmisison about ten threads up. I'm thinking haunted house and occult transmission?

Hope this finds you well,

-- Jim

[jmjm530]

Will: there just might be enough framents around that house to support a positivre pcr test.. does that count?
--------------------------
I'd suppose you'd need one of them there sensitive vl tests to figer that out, eh.

-- Jim

[willing]

well, you know, if hbv integrates itself into our dna and they can manage to replicate neanderthal dna there just might be enough framents around that house to  support  a positivre pcr test.. does that count?
best wishes -stay well

[willing]

yeah, these threads  move fast..as monotherapy I seem to recall riba was in the single digits so when you get to und ifn definitely get the lion's share of the credit. Anyway all the best to you and your brother - I'm sure our time will come - and I suppose we should be grateful we have the option to choose.

[friole]

space - I do find the 5-day interferon shots interesting.  You are right, it is an option but I would have to find a doctor to do it....... but I think I will wait....

forsee -- I do keep in touch with 2irish.  We treated and relapsed about the same time.  I think she and I are like-minded - we will probably wait unless offered a Vertex study.  She did get a post tx biopsy and her damage reversed farom a stage 2 to a stage 1.  Wonderful, huh?  So it sounds like you are still in a holding pattern (?) or is there a study you are actively pursuing?

Bill - always glad to see my favorite buckeye-for-a-day.  I think I have slid off the fence onto the wait side.   I am not emotional as you have pegged, but I have become somewhat obsessive over all of this.  Our good friend candoman reminds me to step back and get away from it.  Good advice -- hey -- where is that guy?  Today is #72.....  I hope you, Bill are doing well.  When did you get to UND?

oleans - liver envy -- now, that's a good one.  Be Well.

goof guy - What happens if all I eat for a week is beans and then go in for the colonoscopy - think I will shoot the GI off the planet? (or is it like when I ate brown rice for a week, dropped acid and went to see the Who?)

goldyn - you are right about the 2 rescue drugs.  My blood levels were my worst side effects and maybe it is good not to push that.  

oh well, I am probably talking to myself over here on page 2, soon to be 3
Be well, my friends.  You have helped me to be more comfortable in my decison.
frijole - bean - kathy

[friole]

Boy - I had to go to a seminar yesterday and didn't get on the computer and I am already relegated to page 2.  That's like the death sentence for a thread.  I hate this new set up.

Chellski called me  a month or two ago and said her high school daughter was doing a paper on hep C and treatment and wanted to know what interferon did and what ribavirin did.  Boy, did I draw a blank.  I think the story we are given is that the interferon knocks out - kills - the virus and the ribivirin halts the replication but it isn't that simple at all.  I did some research after that call, and it seems like the experts can't really tell us why ribavirin works - just that it does help one stay clear.

My doctor said the interferon worked because I reached UND.  She attributed the UND to the interferon, not the Riba.  She said the Ribivirin was necessary for sustained viral response, but it was inadequate.  I gather that she has high hopes for protease inhibitors.

Willing, I can't decide if you are a scientist or a English professor!  Very well said.  One really has to weigh the odds and, even though I handled tx well, I too have aged permanently - 5 years you say?  I think maybe 10.  Sure don't want to age another 10.

  I believe my immune system must be to notch.  It functions effectively to keep the inflammation low and as long as my liver enzymes remain in the 20s I think I am okay.

  Sometimes it is easier to ask yourself, what would you recommend for others, not yourself.  I am in this position now.  My brother (age 58) has a dx of 1a with a viral load of about 262,000.  He has not had a biopsy yet and I am pushing him to do so.  I am assuming his immune system is like mine but I need him to start asking for reports and sending them to me.  Unlike me, he does not like the details.  So my point is, what's good for the goose is good for the gander.  If I do tell him not to treat, why should I.

[Bill1954]

Hi Kathy- this Tx I reached undetectable to <615 (bDNA quant) prior to 28 days, and <5 prior to 8 weeks. Still using 200+ mcgs PEG-Intron with 2000 mgs riba, currently on week 35/72. Sides are very tolerable, I could do the current Tx for maintance if needed.

It sounds as though you'll take a break for a bit; glad to hear it. Stick around for a while, I'll let you know eventually how my sledge-hammer approach pays off.

Take care,

Bill

[friole]

Willing, I appreciate your insights and always watch for your posts.  Perhaps we will both treat someday under better circumstances with kinder meds.

Bill -It sounds like you got the formula right this time but it is unbelieveable that you are tolerating it so well this time.  I would sure hate to get used to this stuff.  I am sure I will continue to check posts as the months go by, but probably not comment on much unless I could add value.  I will look for your continuing posts -- almost at the half way mile marker.
bean

[fishdoc]

Those of you that know my history, know I went through the riba/nonresponder issue (check out fishdocs consult in the archives:briefly 1a, since 70s, 51 yo, beginning viral load 2.9 m, 12 wk pcr 34K, clear at 24.  did 12 wks at 180 peg/ 1200 riba, did the rest of the 60 weeks at 1600 riba )  It sounds like your doc and the alb doc were on the same page.  I do not have a good feeling about my chances, given the tolerance of the riba.  For me, there is no decision, I won't give up another year of my life if there is not a better option.  I do my PCR friday, which will be 7 weeks since my last shot.  I really hope those that got into the vertex trial come through for us!!  Hang in there, we will survive!!

BTW, were those prairie fowl in big bend?? our only pop in NM is close to tatum, they can't hear each other boom because of the oil field equipment: a rig every 40 acres........they are doomed!!

[friole]

No, those Prarie chicken were in Yoakum Co Texas (kind of SW from Lubbock).  They don't even come as far south as Midland, much less the Bend).  It was a field trip for  the Master Naturalist Program progarm I am taking.  We heard a Praire Chicken expert with the TPW ( who is supposed to be writing the conservation plan for them) speak too.  They are concerned about the wind farms popping up all over the place and have determined that one per 160 acres is all a ranch can sustain.  Prairie chickens don't like noise OR high objects.  (I am going to cut and paste this to a more current thread, doc)