Talk about conflicting opinions !

[Upbeat]

Its been 5 years now since I saw a gastro doc. Seeing how I like more then one opinion I set appointments to see 2 today. The first guy named Craig Gross was under the impression that if you have hep-c you should be doing TX no matter the condition of your liver or anything else. Treat Treat Treat was all he could say. I got to tell you he sounded like a sales man for Roche. A couple of hours later I saw a guy by the name of Gary Steven. This guy said the only time you should do TX is as a last resort. He said if your handling the virus without much damage then leave it alone as the treatment could cause more damage then the virus. Now 5 years ago I went through much the same thing. I saw a Gastro who was pro Tx, He was also under the impression that  at the first instant you knew you had chronic hep-c you need to treat. I then went and saw Dr weil here at the University Medical Center.  He has a whole wing at the hospital and after explaining my situtation to him he says forget TX and refers me to a DR Zhang. (could be the wrong spelling) Anyhow this guy wanted me to do some kinda herbs. It was like take four of these three times a day and take 2 of these twice a day and on and on. I might also mention quite spendy. Needless to say I forgot about that. Here I sit 5 years later and still nothen has changed. It seem everyone has their own opinion. Male 60 Geno 1b viral load 5 years ago 7 mil. Viral load today 3 mil. No liver biopsy.  I think I will do a fibrosure but not sure why.
                                                           Ron    

[Upbeat]

For those of you who would suggest I should see a hepatolgist.  Here in Tucson we have only one.  He is at the University Medical Center and it takes 6 months to see him.

                                                                                                       Ron

[pigeonca]

I've heard very good things about Dr. Zhang, and I know that Chinese medicine can do just about everything short of curing hcv.  It can probably keep fibrosis from progressing and/or even reverse fibrosis, but it will not get rid of hcv.  That may not matter, if you have no sides from the virus and your liver is in reasonably good shape.

OTOH, most insurance doesn't pay for TCM and herbal treatments, which are nearly as costly as SOC.  Additionally, whatever the extent of your liver damage, it will probably increase more quickly after the age of 60 than it has up till now.  I'm 63 years old, stage 2, grade 2, so I was certainly able to hold off treatment if I so chose, but because of my age I decided to plunge in and get it over with.  Also I was suffering from fatigue, which influenced my decision.  Unfortunately, there's no cut and dried answer to your question.  All I know is that treatment was very hard on me, and I'm glad I did it now as I'd shudder to think what it would be like as an older person.

[FlGuy]

Sounds like you could have saved time and a couple of co-pays with a coin toss.  The only opinion that it comes down to is yours.  Choose wisely, grasshopper.  Or, go up the road a hundred miles for a tie-breaking opinion. And then toss a coin.

[GrandmaA]

I've been on Dr. Zhang's herbs over 4 years. I take 2 of the same on tx now and one is different. I took them for 3 years before I decided to tx. His formulas are terrific. I forgot to take them on my recent 4 day vacation and I was totally wiped out the first day without them. I just got home and took them tonight again.  My enzymes normalized on his herbs. They control the inflammation so they keep your liver from getting worse and could even make it better.
II have my last 2 months shipment. I will be done with tx in 9 weeks. They are worth the cost. What price can you put on how you feel and to help protect your liver? I have no regrets taking his herbs the past 4 years. They have helped me tremendously.

[debnevada]

saw one gastro....she was awful.

saw second gastro - my VL was 192 and he said you're cured.

Saw third one. VL 4000.     started treating.  UND at week two. Still UND at week 14.

it was an easy decision for me because of the acute thing. best chance to treat is within 6 months of infection. my UND seems to bear it out.

we'll see.

every case is different.

deb

[debnevada]

not treatment itself....sigh

[jboyhk]

Look at post on 6/30 by sankk.

" have been recently done the Liver Biopsy, as suggested dr. Two years back I came to know ,i have the Hep-b positive. Then started the treatmnet with Gastroentrologist/Hepologist. As the SGPT/SGOT were in the normal range , no specific medicine was advised except herbal medicine.
Now last month during the followup check ,found the sgpt/sgot values elevated above the normal values,And the HBV Dna quantative 1406306.0 IU/ml."

Basically the herbs did nothing, in fact his hep reactivated. There are always 2 sides to a story whether its treatement drugs or herbs.

[Happyhungry]

I was in a similar situation to you. Male 60, Geno 1b, starting viral load 13 million. Stage 2 fibrosis and level 2 inflamation (inflammation).  Had been deferring TX for years 'cos the odds were so bad.  I had done whatever I could to reduce the danger - looked after myself, never drank nor smoked and did Chinese Medicine for a while  to hold down the liver enzymes and try to minimize the damage. But the disease still progressed, especially once I hit my late 50's.  My wake up call came following the death of three friends from hep-C related causes.  But still I resisted going on SOC, trying all the herbal formulas, liver cleansing routines etc. on the market. Can't say that anything actually made a difference and I spent a fortune.   Finally I got my biopsy done which was absoutely crucial to getting over what was, in fact, mental paralysis. Once I knew that my liver was seriosly inflamed and the scar tissue was spreading, my head came out of the sand.  I decided to go for a VX 950 trial and was lucky enough to get into a triple therapy arm that took VX-950 as well as peg and riba.  That cocktail stopped the virus cold.  I went undetectable in three weeks and my various hep symptoms (intense migraine headaches, rashes, joint pains mimicking arthritis, elevated AST and ALT levels) all dissapeared in weeks.  Most other folks on triple therapy also seem to get similar results. The triple therapy cocktail is hard to take and I had a lot of the side effects.  But it worked.  I decided to continue with SOC after the end of the 12 week trial to get some additional insurance. I am now in week 26/39 of TX, following the Drusano model. Hopefully I will get my SVR, although there are no guarrantees, of course.  The treatment has been hard for me, but faced with the alternative that was fast approaching - serious liver disease - the decision to go ahead was a no-brainer.

My advice to anyone hitting the mid 50's with geno 1 is to get the biopsy done. Whether and when you then go ahead with TX is a very tough call that depends on disease stage, your general condition and (in my opinion) availability of protease inhibitors. What has changed over the last 5 years is that we now know that VX-950 as part of a triple cocktail is very effective and its a fair best that the combo will find its way to the market by 2009 at the latest. At that point the success odds for geno 1's approach those of geno 2s and 3's :  ie 75% or better.  TX is not without its dangers, but what other option actually gets rid of your problem?
  

[Tallahassee]

Good post, Happy!

I never understood "wait & watch" technique - to me it is the same as "hide & watch your decease to progress and more difficult to treat"...

Good luck on your decision, Upbeat!

All the best

[katerika]

I travel over 1 hr. to see my Dr. I say make the appointment and have a Biopsy done. I waited for 5 years between Biopsy's and went from stage 2 - 3/4. My March  Dr. visit basically said "it's time to treat" and here I am on shot 6. Hindsight is always 20/20. I had friends who said treat in 2002, before it does the damage. I waited, I probably have been walking around with this 35 years. It is your decision, Not to be too negative but, It is called the "silent killer."

[stacyb321]

That was a very infomative post in a language I could understand - thank you!
Im 43  - diagnosed 2 months ago - go for ultrasound next week - if no damage - will wait for that "triple cocktail" hopefully by 2009.

[az hepper]

You have gotten some great responses, I would like to add, with the exeption of
I am 1A geno, and 56 years of age, your research and evoloution is very similar to mine. in fact I am tucson as well, and did a year  thru the "integrative clinic" at UMC.
In the end didn't do much to help my enzymes, which was the my goal to slow to inflammation and hopefully the fibrosis, didn't quite work out that way. I did a telephone consult with Dr. Zhang and was turned off when the first thing he asked was for my Master Card #. It was just a bit overwhelming the amount of herbs he was suggesting. I know some are very happy with that approach,
but I don't know if his statistics have ever been verified...

I have had two Biopsy and a fibrosure blood test in the past,
decided to treat because of my level of Fibrosis, now, just few weeks left on my 48 weeks. I wish I would have done even earlier, for all my consternation on the subject, I know the odds, but I decided to just get it over with.
HCV is not going away on its own.

Would encourage you to get a Biopsy, that's the key, I think most would agree, perhaps your damage is minimal , requiring no interventions. If you don't want to do the Biopsy, try the fibrosure, it's not that expensive, supposedly fairly relaible on the lower or higher ends of Fibrosis. At least another data point for you to consider.
good luck
PS if you ever do treat, try and time it away from summer, the heat is murder...

[bobbyullc]

the wait and watch idea is because in the last 10 years the svr rate has gone from about 10% to 45%.
in the next 5 years it should go from 45% to 95% with the new drugs. it should also drop time in tx from 48 weeks to maybe 4 weeks. SO why tx now when in 1 or 2 years from now tx may be so much more successfull in such a short time unless you MUST tx now? FEAR?
WHAT IS WRONG WITH WAITING

[bobbyullc]

the wait and watch idea is because in the last 10 years the svr rate has gone from about 10% to 45%.
in the next 5 years it should go from 45% to 95% with the new drugs. it should also drop time in tx from 48 weeks to maybe 4 weeks. SO why tx now when in 1 or 2 years from now tx may be so much more successfull in such a short time unless you MUST tx now? FEAR?
WHAT IS WRONG WITH WAITING

[mremeet]

What the others have said about the biopsy is right on. You really need to accurately investigate the condition of your liver before deciding to abstain from treatment any longer. And I would not rely on a fibrosure test to assess liver damage. I've had two fibrosure tests within a year of each other. The first said I was F0 (i.e. no fibrosis), the second said I was F2 verging on an F3 (i.e. extensive fibrosis). Unless something is *drastically* wrong with you, there's no way you can progress from F0 to nearly an F3 within less than a year (I've had a typical mild/stable case of hepC for almost 25 years). I also had an actual biopsy performed 6 years ago and it indicated F1 damage (i.e. minimal fibrosis). A followup biopsy was performed just prior to starting on the vertex trial (about a year ago) and it indicated no progression beyond the F1 measured 6 years ago. So in my case I had two biopsies over the past 6 years, both indicating F1 damage. And then two fairly recent fibrosure tests within one year of each other with one resulting in F0 and the other resulting in F2/F3. To me this demonstrates a very poor accuracy/reliability/repeatability of the fibrosure test - I would not trust the critically important assessment of liver condition to a fibrosure test alone. Get a biopsy performed by a competent, experienced liver doctor (and NO @#$%* interns or student doctors either!) and have the slides evaluated by an equally experienced and competent technician for grading (and preferably have it graded by 2 or 3  good techs and get an average). Once you know what your liver "gas gauge" is reading (i.e. E 1/2 F), then you can make an intelligent and informed decision about when (or even if) to start treatment. In my opinion, if I were in your shoes I'd be looking real hard into getting into a phase 3 vertex trial (as long as I was assured of getting ribavirin and a treatment duration of no less than 24 weeks).

Happy - great post, hope you're hangin' in there ok. Keep marching towards the promised land, by now it should be coming into view.

bobbybull quote: "the wait and watch idea is because in the last 10 years the svr rate has gone from about 10% to 45%. in the next 5 years it should go from 45% to 95% with the new drugs. it should also drop time in tx from 48 weeks to maybe 4 weeks."

Dude, what in the world are you talking about? How do you know that genotype 1 treatment will be so drastically improved in only 5 years so that the SVR rate will go from 45% to 95%??? And how do you know that the treatment duration will be drastically chopped from 48 weeks to a mere 4 weeks simultaneously??? C'mon, that's absurd, there is no evidence or anecdote to even suggest anything like that will happen that soon. Maybe in another 10 or 20 years, but certainly not within 5.

[APKhaos]

This is another STRONG suggestion that a biopsy is essential for anyone in their 50s with a positive HCV diagnosis. Regardless of any other indicators, including VL, ALT, AST, a biopsy is the ONLY sure way to determine the damage done to your liver. Knowing that fact is the single most important factor in making a sensible treatment decision. There is NO substitute for the biopsy, period.

If it turns out that you have some time [Fibrosis <=2], then my vote would be to follow the development of current new treatment drugs, with a view to treating with them when they come to market. On current data, VX-950 should be generally available in 2008/2009, and others are in the pipeline as well.

If it turns out that you have later stage liver damage already [Fibrosis >=3], then the choice becomes more difficult. The longer you wait, the more the disease will damage your liver. Concensus is that Stage 3 and below will actually regress once the insult to the liver [HCV] is removed. There are some who say that Stage 4 damage [cirrhosis] may regress as well, but the jury is out on this point.

mremeet & happyhungry: While I agree that there is absolutely no data to support anything less than 24 weeks [12 SOC = VX & 12 of SOC], there are always outliers to confound the general case. Just for grins, one subject in our trial group bailed out very early - less than 28 days of VX + SOC. Had nasty GI issues. That subject is still SVR at more than 28 weeks post. Amazing, huh?

[mremeet]

Yes, I remember you referring to the guy who svr-ed after merely 4 weeks of treatment. That's great, fantastic really. But it hardly suggests/means/proves in any way, shape or form whatsoever that 95% of geno 1 patients in general are going to SVR with a mere 4 weeks of treatment - ain't gonna happen. It's not even gonna happen with 24 or even 48 weeks of treatment (with respect to SOC+telaprevir). And I'd be willing to bet ~ONE MILLION DOLLARS~ on that statement too.

[APKhaos]

Agreed. My only point is that there will be outliers that some will see as proof positive of some dubious general proposition. Our 4 week SVR guy is a case in point. He was lucky, but the fact remain that 95% Geno 1 SVR is not possible with any treatment known or in trial today. Your $1M is safe.