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919881 tn?1243657171

Continue treatment or not???

HELP - this is my first time posting a question although I have been observing for some time.  I will try to be succinct as it seems as though you all are so knowledgeable!!!  I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see.  I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right?  OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99.  I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.

She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx.  So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.

The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return.  I am having a hard time finding this information online and wondered if this is something that others are experienced with?  She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return.  She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.

Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year?  OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while?  She said no.

So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know.  Even though I have been watching from afar your comments and conversations have boosted me far more than I could say.  Thanks for any help or info you can offer.

Tracy Hopkins
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Avatar universal
Tracey:

You did have a very significant response to the medications. It's true that you didn't become undetectable by week 12, but you came quite close. Although there are no guarantees, you are on a likely path to clear the virus before week 24. Thus your chances of beating the virus are significant – not great but substantial.

The article you cite concerns 48 vs 72 week treatment regimens. I think most people on this board are advocating that you fight to maintain your treatment dosages and maintain 48 weeks of uninterrupted treatment. The question of whether you would continue past 48 weeks is a separate question, and one that only your treating physician could answer. According to the article you mentioned, there are a higher drop out rate for those treating for 72 weeks, which makes sense, since it doesn't necessarily get much easier.
Helpful - 0
919881 tn?1243657171
Thanks for your input but the specific url that antman posted discussed who could be called an evr - his contention was that i was not an early responder (the EVR was actually a 4 week number in this study)  I was telling him that i thought i was an evr based on the 100 fold decline.  did you read the url he posted?  It would be cool if you did that way i would know if i am reading correctly.

I have another question - everyone is telling me that i need to fight fight fight for longer tx but then here is this study from just a week ago???

http://www.medicalnewstoday.com/articles/148570.php

Extended Treatment Duration in Chronic Hepatitis C Genotype 1-Infected Slow Responders: Final Results of the SUCCESS Study(2)

The primary objective of the SUCCESS study was to evaluate the effect of extending treatment duration to 72 weeks with PEGINTRON and REBETOL(R) (ribavirin, USP) combination therapy in genotype 1-infected patients who have slow response to therapy, defined as having detectable virus (HCV RNA) with at least a 2 log10 reduction in viral load at treatment week 12 and undetectable virus at treatment week 24. In this large, prospective, randomized, multinational clinical trial, slow responders were randomized at treatment week 36 to receive PEGINTRON combination therapy for a total of 48 weeks (n=86) (standard approved duration) or 72 weeks (n=73). Patients with undetectable virus at week 12 (complete early virologic response), received treatment for 48 weeks (n=816), whereas patients who did not respond to treatment (less than a 2 log10 reduction in viral load at week 12) were discontinued from the study. In total, 1,419 patients were treated.

In this study, sustained virologic response (SVR)(3) with 72-week treatment was not statistically superior to the 48-week treatment in slow responders (47.9 percent (35/73) vs. 43.0 percent (37/86), respectively), the primary endpoint of the study. Relapse rates between these two arms also were not significantly different (32.7 percent (16/49) vs. 47.1 percent (32/68), respectively) and adverse events were similar among treatment groups (secondary endpoints). Early discontinuation rates were higher in the 72-week arm compared to the 48-week arm (23.3 percent (17/73) vs. 9.3 percent (8/86), respectively).
Helpful - 0
568322 tn?1370165440
"The absence of an early virologic response [EVR] at week 12, defined as undetectable HCV RNA ( 2-log decrease in HCV RNA at week 12 who have not become HCV RNA negative by week 24."

You started with a viral load of 700,000.  A 2 log drop means you remove the last two zeros.....a decrease down to 7,000 at week 12 would be a two log drop.  And your results were 99 so you got more than a 2 log drop.  

Co  
Helpful - 0
919881 tn?1243657171
Thanks for your input - I read the info on the Url  that you posted and it said that EVR defined as undetectable or greater than 100-fold decline in HCV RNA by week 12 have a 70% chance of svr whereas those who do not have less than 3%.  With my numbers going from 700,000 down to 3,000 and then down to 99 by week 12 my reduction was a 100 fold right?

More confused  Tracy
Helpful - 0
919881 tn?1243657171
Hey everyone - I was searching for the Berg study that someone referred me to and came accross this - it is from the Hepatitis Association from April 2009 - fairly recent and I think the number that they quote is 98%.  I have included the URL and the paragraph where i got the stat from - any thoughts on this?

http://www.hepcassoc.org/news/article183.html

Stopping Treatment in Likely Nonresponders

The absence of an early virologic response [EVR] at week 12, defined as undetectable HCV RNA ( 2-log decrease in HCV RNA at week 12 who have not become HCV RNA negative by week 24. Recent studies show that this information can be used to individualize the duration of therapy.

The HCV RNA status at week 4 also provides useful prognostic information that can be used to individualize the duration of therapy in genotype 1 patients (4,5). Normalization of ALT on treatment is an indicator of a therapeutic response but lacks specificity, and, thus cannot be used in place of serum HCV RNA determinations.
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Avatar universal
http://www.liverfoundation.org/downloads/alf_download_321.pdf

BTW- the stat for SVR at 12 weeks is <3% if not clear according to this article. you NP said 1% right? not too far off.
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