Diag in December 2008

I have been told that I need to treat. Have been researching for alternatives. High load and stage 2 fibrosis. It has been 5 months since diag. Thinking about starting treatment in June. I have many opportunities for advancements related to work. I am afraid of not being able to work major finacial support for family. My husband is supportive, belives in prayer, my sister does energy medicine and works on me weekly. Has anyone else tried alternatives to conventional tx.

T

[newleaf09]

The VL does not matter except if it comes back low.  In that case you are much closer to a guaranteed cure and lots of folks would go for it just to get it over with.  Another issue is that people with level 3 and 4 (cirrhosis) fibrosis are considered less responsive to treatment.

There is a lot of scientific research currently on some of the non-traditional treatments, like chinese herbs, but to my knowledge, none of it has so far been found to be effective.  

Talk to your hepatologist and explain your work opportunity and try to feel him out for a fair opinion.  Maybe promise to get another biopsy in a year or so to monitor the progression of the disease.

[jmjm530]

Don't know your history or even genotype, but in general as a stage 2 you have the reasonable option to wait for better drugs. If this wasn't pointed out to you by your current doctor, than ask why. If the answer isn't satisfactory, by all means seek a second opinion from a liver specialist (hepatologist). Unless you're genotype 2 or 3, you will need to treat a minimum of 48 weeks given your high viral load. Some end up treating for 72 weeks if they still have virus present at week 12. There are good reasons to treat and there are good reasons not to. Educate yourself and find out what is best for you.

-- Jim

[jmjm530]

Cured4Life: I just wanted to mention that at Stages 3 and 4 your chances of a cure, according to the latest medical journals, are reduced.
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This is not true and this is the second time I have pointed it out to you. Please revise your future advise per the facts or post a more current and credible study in rebuttal.

The very large Win-R study (4913 patients) shows the same SVR rates for all stages except stage 4. According to the study commentary, the reason the medical articles you cite may have shown treating earlier offers better SVR rates is because earlier studies probably lumped stage 4's with stage 3's. Certainly not criticizing your decision at all, just adding balance to a discussion and some statements you have made.
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From Win-R

"In the entire population of patients logistic regression showed no statistically significant difference in SVR rates between Stage 0 (44%), Stage 1 (46%), Stage 2 (44%) and Stage 3 (44%). "

http://www.hivandhepatitis.com/2006icr/ddw/docs/052306_e.html

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[jmjm530]

Cured: It doesn't get any clearer then that - for those who have eyes.  Fibrosis is a predictor of successful treatment
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I'm afraid it does get clearer if you read the entire abstract instead of just a headline.

The study clearly states: "In the entire population of patients logistic regression showed no statistically significant difference in SVR rates between Stage 0 (44%), Stage 1 (46%), Stage 2 (44%) and Stage 3 (44%). "

In any event here is the entire abstract for anyone who wants to check:\
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The Effect of Liver Fibrosis and Scirrhosis on Sustianed Virological Response in 4913 patients with hepatitis C: Results from the Win-R Trial

Fibrosis is a predictor of sustained virological response (SVR) in hepatitis C (HCV). The majority of prior studies do not involve enough patients with cirrhosis to truly define the contribution of advanced fibrosis to SVR and nearly all combine Stage 3 and Stage 4 in their analyses.

The primary objective of the study was to analyze the effect of fibrosis on SVR in the Win-R trial of 4913 patients receiving PEG-IFN alfa 2b and ribavirin (RBV: fixed-dose (FD) 800 mg or weight-based (WBD) 800 – 1400mg daily.

Fibrosis stage was obtained on biopsies within 3 years of randomization using the Metavir scoring system by local pathologists. SVR was determined by PCR negativity ( 65kg were included in this analysis (n = 4223). The effect of each individual fibrosis stage on SVR was determined by logistic regression for all patients (n = 4913) regardless of treatment group.

Results

    * The distribution of fibrosis score was as follows; Stage 0 = 654; stage 1 = 1460; Stage 2 = 1324; Stage 3 = 975; Stage 4 = 500.
    * SVR was no different between WBD (657/1464; 45%) and FD 611/1445; 42%) RBV in patients with stage 0 – 2 fibrosis.
    * However SVR in stage 3 to 4 was significantly increased in the WBD group ( 282 / 657; 43%) compared to the FD group ( 242 / 657; 37%); p = 0.02.
    * In the entire population of patients logistic regression showed no statistically significant difference in SVR rates between Stage 0 (44%), Stage 1 (46%), Stage 2 (44%) and Stage 3 (44%).
    * However all stages were significantly superior to Stage 4 which only had an SVR of 34% (p < 0.0001).



In conclusion, the authors write, “WBD of RBV is important to increase SVR in patients with more advanced stages of liver disease. However, overall only cirrhosis is a negative predictor of SVR when individual fibrosis stage and SVR is evaluated.”

“The cirrhotic patient represents a difficult to treat patient requiring optimal therapy, including weight-based RBV.”

The Win-R trial was supported by Schering-Plough.

05/23-06
Reference
N. Afdhal, I. Jacobsen, R. Brown, and others. The effect of liver fibrosis and cirrhosis on SVR in 4913 patients with hepatitis C; Results from the Win-R trial. Abstract 655 (Oral Presentation). Digestive Disease Week 2006 (DDW 2006). May 20-25, 2006. Los Angeles, CA.

http://www.hivandhepatitis.com/2006icr/ddw/docs/052306_e.html

[jmjm530]

Cirrhotic patients are DIFFICULT TO TREAT Jim - as opposed to non-cirrhotic patients.  That's what your study that you quoted said.  Advising people to become more cirrhotic before they start treatment, as you - a non-doctor- do , makes them harder to treat,
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Yes, cirrhotic (stage 4) patients are more difficult to treat. That's what the study says. What the study does not say is what you said earlier in the thread: "Another issue is that people with level 3 and 4 (cirrhosis) fibrosis are considered less responsive to treatment. "

That simply isn't true. Stage 4 is more difficult to treat, not stage 3. And no, I'm not advising anyone to become "more cirrhotic", and in fact I think anyone who is stage 3 should seriously consider treatment.  Stage 3 is not cirrhosis. And in fact I have no problem with anyone treating be it stage 0,1,2 or 3, as long as they have done their homework and understands the facts not the fiction.

-- Jim

[newleaf09]

The information I saw was a poster at last November's liver meeting that was published afterwards online.  Big survey of data, lower responce in stage 3 and 4 patients.  Scared me because I have cirrhosis.  HOWEVER, I cleared after 10 days - 2 shots of peginterferon (heck maybe one, they didn't test till I had 2 under my belt).   I had low VL and apparently that trumps cirrhosis.  Individualism is still important here.  A lot of the papers try to offer prognosications of success but when you get right down to it, everybody has an individualized response.  The predictions can lead you astray; shouldn't take them as gospel or you'll get unnecessarily freaked out.

[jmjm530]

New:  Big survey of data, lower responce in stage 3 and 4 patients.  
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Are you sure it wasn't in the "3 and 4" group as a whole as opposed to in either 3 or 4 individually. As in life, the truth is often in the details with these studies per the Win-R study posted above.

In any event, it would be foolish to say that fibrosis progression doesn't play a role in making a treatment decision, the question is what is best for an individual patient at a given time and that decision has to take into account many variables, now including the imminent availability of the PIs. So good minds, professional and otherwise can disagree whether someone should treat now or wait for better drugs.

Hopefully those trying to make a decision will see that there are pro's and con's on both sides and there are  more reasonable options than simply "try it and see what happens".

People certainly shouldn't be scared from treatment but at the same time they shouldn't be scared into treatment. It's a tough enough decision as is.

-- Jim

[portann]

bump

[portann]

I congratulate you on your UND RVR status. That's extremely promising and one of the best indicators for ultimate success.

I find it incorrect that you say you’re CURED, even though you also say:

“May 02, 2009 01:29AM in the Hepatitis C Community
Thank you for your words. Several weeks - almost a month now after stopping treatment I feel great!”

"Treatment cured me."

"successfully treated for Hepatitis C this past year."

“If I had not tried I would still be infected today."


I don't want to rain on anyone's parade but I fail to see how you could say categorically that you beat this thing when the jury is officially out.

You said in another thread that you had an interest in the arcane topic of occult hepatitis even BEFORE your diagnosis, so declaring yourself SVR at this stage is, well......puzzling.

I'm also a 1A, with little damage but lower starting viral load than you. I started my own tx of 48 weeks BEFORE you did and finished AFTER you. Did you cut your tx short and on what basis? Your viral load was high.

I simply wouldn't dream of posting I'm CURED until at least my three month post-tx PCR and even then with reservations.

So I’m scratching my head because you say you're CURED but it seems you haven’t had your four week post-tx PCR. Did you?

You were familiar with the arcane topic of occult hepatitis even before your diagnosis but say:

"I was diagnosed at age 51, one year ago. Of course I was devastated and thought my life was over."

This is quite confusing to me that you thought mild liver damage was the end of you. I’ve had HCV for over forty years and was a stage zero.

I sincerely hope you’re cured and believe you will be with that RVR.

That said, it is wrong to say you’re cured less than four weeks after your EOT. You are mis-stating your case in a falsely authoritative manner.