Medical Forum / Diseases and Disorders / Hepatitis / July 2006
Less then 600
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Ally - 19 Jul 2006 14:32 GMT My Dr left a message on my machine about my 12th week blood test. She said that the count is less then 600 which is considered undetectable (yay!!!!!!!!!!!!!!!!!) but I read here that ppl are clearing the virus completely so... this is a bit confusing to me. Is less the 600 enough or do I need to be at 0. Well, the great thing is that because I am considered undetectable, I can start counting my weeks till I am done which means I have approxiamtely 45 weeks to go. She also said she is still waiting for the "false negative" test to come in. I have no idea what that is, I assume it means the virus is too low to be detected, yes? So it would just be confirmation on the VL test. What if it comes back positive? What does that mean?
Ally
Thomas Wagner - 19 Jul 2006 16:32 GMT >My Dr left a message on my machine about my 12th week blood test. She >said that the count is less then 600 which is considered undetectable >(yay!!!!!!!!!!!!!!!!!) but I read here that ppl are clearing the virus >completely so... this is a bit confusing to me. Is less the 600 enough >or do I need to be at 0. There's no test that can detect 0. All virus tests have a level below which they can't detect anything. The test your doc ordered needs at least 600 virus particles for a positive result, but they can't guarantee that there's no virus left if the result is negative. But in reality, a level below the detection limit during treatment means you've cleared.
>Well, the great thing is that because I am >considered undetectable, I can start counting my weeks till I am done [quoted text clipped - 3 lines] >yes? So it would just be confirmation on the VL test. What if it comes >back positive? What does that mean? There are a few tests that have a lower detection limit, qualitative tests (that don't count) can detect down to 10-20 virus particles. She might have ordered one of those to make sure. I wouldn't worry about that turning up positive, that's pretty unlikely since you're obviously a responder to treatment.
Thomas
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Burke Gilman - 19 Jul 2006 16:42 GMT > My Dr left a message on my machine about my 12th week blood test. She > said that the count is less then 600 which is considered undetectable [quoted text clipped - 9 lines] > > Ally
>From the laboratory perspective, the virus is either detectable or it is not detectable. In your case now, the virus is undectable -- the lab test cannot give you a better result than that!
"Undetectable" means the viral load in your blood is somewhere between zero and 60 (or 600 or whatever). I guess that because the viruses are so small that they essentially cannot be seen unless there are a bunch of them, that the laboratory can't say for sure if the viruses are entirely gone or not. All they can say is that they cannot see the viruses, not even using their fancy, expensive, RNA-muliplying PCR tests. Thus, it certainly appears that you have cleared the virus.
But science advises it would be premature to say the virus is gone for good at this stage. There could still be some hiding out somewhere, and the numbers therefore could be multiplied to detectable levels again. Consequently, the most accurate conclusion is a simple statement of the facts: The lab could not detect any virus in your blood serum.
Do you have a cure today? Of course not. What your really have, from the statistical perspective (for genotype-1 patients such as yourself) is what they call an Early Virological Response (EVR).
An EVR is a "virological response" because the virus has *responded* to the battle by suffering an apparently total destruction. It is "early" because" the response was attained *early* in treatment -- which is defined for geno-1 as within the first 12 weeks.
Because patients who attain EVR prove more likely to attain the hoped-for SVR in the long run, your lab results are good news. If you started out with a 50-50 chance for attaining an SVR, then I think your chances are now improved to be better than that, based on the available research statistics and the fact that you have an EVR.
If the virus stays undetectable, then that will mean that somewhere along the line you cleared it. Right now it appears from your labs that you already cleared it, but the scientists caution us to understand that we cannot be sure yet.
I'll say this for sure: When I got news of my EVR, I couldn't believe it. At that time I was sure it was all some mistake. It took several weeks for me to finally accept that I might be beating this thing after all -- I think its the drugs. They are killing the virus, but they also kill my spirit and my hope sometimes. Its a tough road to walk, but its good to pay attention to those numbers when they are telling you that things are looking pretty good.
Best wishes,
BG
Ally - 19 Jul 2006 18:13 GMT > I'll say this for sure: When I got news of my EVR, I couldn't believe > it. At that time I was sure it was all some mistake. It took several [quoted text clipped - 3 lines] > good to pay attention to those numbers when they are telling you that > things are looking pretty good. That's EXACTLY how I feel. It is like, "oh, okay, now what...". I thought that when I heard the news I would be jumping up and down and screaming with joy but I am not and feel very weird about that. I just heard yesterday so I guess maybe it just hasn't sunk in. I'm like telling everyone I know and trying to act excited but... must be the drugs.
Ally
brian - 19 Jul 2006 20:58 GMT >> I'll say this for sure: When I got news of my EVR, I couldn't believe >> it. At that time I was sure it was all some mistake. It took several [quoted text clipped - 12 lines] > > Ally I felt the same way & I still do.Until I reach undetectable for at least a year after tx,I doubt it will change.I guess I'm afraid of a let down.I've been undetectable for 11 month's now.I'm fighting high Triglycerides & GERD at this time as well.I won't take anything for either because all of the meds for both are very bad for the liver.I'm doing the diet,fiber & trying to do the exercise thing.Hope it works or I'll have to d/c my mood elevator(Seraquel)and it really is helping with rage,anxiety & mood swings,let alone helping me sleep.The problem is that it can raise your Tri's and blood sugar.It makes some people eat like a horse,but I can't say that it's made much difference for me in that department.
Peace & SVR, BrianD
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Di Di - 26 Jul 2006 04:10 GMT > > My Dr left a message on my machine about my 12th week blood test. She > > said that the count is less then 600 which is considered undetectable [quoted text clipped - 59 lines] > > BG Hi - My viral load went from over 2 million to 1100 after 12 weeks of treatment on Peg-interferon and riba. Now I'm at 24 weeks and I just had my viral load tested again. I haven't gotten the results back yet, but my physician said if it's "none detected" I will continue the treatment for another 24 weeks, but if there is virus detected we will stop treatment (apparently that is the protocol for the drugs now). Has anyone else been told that? I am genotype 1a (which I know is the hardest to treat). As much as I don't want to do another 24 weeks of treatment, being sick and tired, I would rather deal with that then have feel like I failed the treatment. And if I "fail" treatment, then what?
greyhackles - 26 Jul 2006 04:38 GMT >Hi - My viral load went from over 2 million to 1100 after 12 weeks of >treatment on Peg-interferon and riba. Now I'm at 24 weeks and I just [quoted text clipped - 7 lines] >have feel like I failed the treatment. And if I "fail" treatment, then >what? It sounds trite, but you don't/didn't fail treatment, treatment fails you.
For genotype 1s on the 48 week treatment plan, the SVR rate for those that haven't cleared the virus by the 24th week is very low. While the treating physician may attempt a "Hail Mary" by continuing therapy for the full 48 weeks, the statistics are what they are, which is very poor.
There is a different treatment scheme being used by some docs for g-1s that had an unsuccessful round of conventional therapy, which basically is a course that lasts 48 weeks from the point the virus is *cleared*. So, assuming you tested clear at 24 weeks, you'd go another 48 weeks (yeah, it sounds brutal from here, too).
Did you have a liver biopsy pre-treatment? Do you remember the grade/stage? If the staging is moderate or lower, it's possible there will be alternatives to the Peg/Riba combo in a few years that you can wait and see how they progress...
/greyhackles
Di Di - 27 Jul 2006 02:16 GMT > >Hi - My viral load went from over 2 million to 1100 after 12 weeks of > >treatment on Peg-interferon and riba. Now I'm at 24 weeks and I just [quoted text clipped - 27 lines] > > /greyhackles You're right, I'll find out next week if the treatment failed me or not. My physician said if my viral load comes back "none detected" (which is what I'm hoping for) then I will do another 24 weeks. This is all totally out of my hands, so I'll just live with however things turn out. I know eventually there will be other treatments - maybe not as brutal as the one I've been on! But in the meantime I'll be fine and who knows, maybe my test will be "none detected"!
I did have a biopsy pre-treatment which came back Grade 3, Stage 2.
elmoemerson@webtv.net - 26 Jul 2006 12:12 GMT Re: Less then 600 Group: alt.support.hepatitis-c Date: Tue, Jul 25, 2006, 8:10pm (CDT-2) From: dizadncr@charter.net (Di Di) Burke Gilman wrote: Ally wrote: My Dr left a message on my machine about my 12th week blood test. She said that the count is less then 600 which is considered undetectable (yay!!!!!!!!!!!!!!!!!) but I read here that ppl are clearing the virus completely so... this is a bit confusing to me. Is less the 600 enough or do I need to be at 0. Well, the great thing is that because I am considered undetectable, I can start counting my weeks till I am done which means I have approxiamtely 45 weeks to go. She also said she is still waiting for the "false negative" test to come in. I have no idea what that is, I assume it means the virus is too low to be detected, yes? So it would just be confirmation on the VL test. What if it comes back positive? What does that mean? Ally From the laboratory perspective, the virus is either detectable or it is not detectable. In your case now, the virus is undectable -- the lab test cannot give you a better result than that! "Undetectable" means the viral load in your blood is somewhere between zero and 60 (or 600 or whatever). I guess that because the viruses are so small that they essentially cannot be seen unless there are a bunch of them, that the laboratory can't say for sure if the viruses are entirely gone or not. All they can say is that they cannot see the viruses, not even using their fancy, expensive, RNA-muliplying PCR tests. Thus, it certainly appears that you have cleared the virus. But science advises it would be premature to say the virus is gone for good at this stage. There could still be some hiding out somewhere, and the numbers therefore could be multiplied to detectable levels again. Consequently, the most accurate conclusion is a simple statement of the facts: The lab could not detect any virus in your blood serum. Do you have a cure today? Of course not. What your really have, from the statistical perspective (for genotype-1 patients such as yourself) is what they call an Early Virological Response (EVR). An EVR is a "virological response" because the virus has *responded* to the battle by suffering an apparently total destruction. It is "early" because" the response was attained *early* in treatment -- which is defined for geno-1 as within the first 12 weeks. Because patients who attain EVR prove more likely to attain the hoped-for SVR in the long run, your lab results are good news. If you started out with a 50-50 chance for attaining an SVR, then I think your chances are now improved to be better than that, based on the available research statistics and the fact that you have an EVR. If the virus stays undetectable, then that will mean that somewhere along the line you cleared it. Right now it appears from your labs that you already cleared it, but the scientists caution us to understand that we cannot be sure yet. I'll say this for sure: When I got news of my EVR, I couldn't believe it. At that time I was sure it was all some mistake. It took several weeks for me to finally accept that I might be beating this thing after all -- I think its the drugs. They are killing the virus, but they also kill my spirit and my hope sometimes. Its a tough road to walk, but its good to pay attention to those numbers when they are telling you that things are looking pretty good. Best wishes, BG Hi - My viral load went from over 2 million to 1100 after 12 weeks of treatment on Peg-interferon and riba. Now I'm at 24 weeks and I just had my viral load tested again. I haven't gotten the results back yet, but my physician said if it's "none detected" I will continue the treatment for another 24 weeks, but if there is virus detected we will stop treatment (apparently that is the protocol for the drugs now). Has anyone else been told that? I am genotype 1a (which I know is the hardest to treat). As much as I don't want to do another 24 weeks of treatment, being sick and tired, I would rather deal with that then have feel like I failed the treatment. And if I "fail" treatment, then what? /////////// At any rate, you'll need some 'recovery' time from the current round of tx, usually about 6 months. Your doc may want to keep you on maintenance doses during that time. You might want to consider a regimen of daily Infergen and riba for another round of tx. elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
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Di Di - 26 Jul 2006 15:15 GMT > Re: Less then 600 > [quoted text clipped - 74 lines] > > http://community.webtv.net/elmoemerson/TheFamilyAlbum I wonder if that's an option? My physician makes it sound like if this fails, there's nothing else to do, but wait until "they" come up with a new treatment.....Have you done this treatment? Continued after 6 months? How long does it take to "recover" from 6 months of pegaysus and Riba? I'm working 4 six hour days now, off on Fridays and I'm thinking even if I stop treatment I'll probably still be exhausted if I start working a full 40 hour schedule right away.
I sure appreciate the info on this group. I wish I would've found it months ago!
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