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I would like to know how many people have really been cured? Specifically who is UND for 3 yrs or more?
Who has been UND for 6 mos to a year and then relapsed?
Who has been UND for 6 mos to a year and then relapsed?
Just had a physical last month and I'm still SVR after more than four years. My doctor told me I was 'cured' after being SVR for two years and I'm not too concerned yet mentally when it's been five years I think I'll be finally convinced it's gone.
18mths post tx und. and i cannot bring myself to utter the word cured. I will feel more comfortable at 2yrs., but i might find a place in my vocabulary for THAT WORD 5 yrs. post tx. Iam just happy for what i have right now.....
I will take a stab at your question, regarding ' when do we get to call someone cured that has achieved and maintained SVR.' First, I still am comfortable with using the term "cured", as a technical description for almost all SVR's. The small letters indicate that it is not a declaration of formal, total, unequivocal eradication (Cure) of the virus, but a sort of practical working definition for 'cure'. I think this terminology allows room for miniscule error in the 'absolute' nature of the term, and also forgives the small percentage that actually do relapse later than the six-month rule.
Now, when can we use the term "Cure", as in gone, eradicated, and never will return without outside infection? Possibly you could define a time period, maybe three years, maybe five years, in which, if no other SVR's are found to EVER 'relapse' beyond this point without being reinfected, then this could become a 'cutoff' point, and could then go from being a 'cure' to being a 'Cure!'. If we become certain, through tracking, and rigorous follow-up studies, that literally NO ONE really ever truly 'relapses' after a certain point, then we might be able to have a viable concrete definition for 'Cure'.
Currently, with some evidence of late relapsers, beyond six months, or one year of SVR, I think we have to be content to use a compromise term like 'cure*', maybe with the asterisk, and wait to learn more before assigning a hard and fast point for true 'Cure' status.
What do we do if we turn up a few who truly relapse after six or eight years, as the couple of cases were reputed to be in the immunosuppressive drug incidents published in the past few years? We don't know all the real details of these cases, but if they turned out to be true, then I feel we would have to remain using only the 'cure*' terminology.
I just think we need more definitive study on the issue, a consensus of results, and full agreement that there either: can be, or cannot be, late relapse, without having been reinfected.
At the same time, there is a question in the definition of 'Cure' as to whether that should also mean that problems resolve, or symptoms go away. How about spontaneous clearers of the virus, who have been found, by and large, to be very symptomatic many years down the road? They only had an acute, brief HCV infection, and their immune system cleared it, and in effect 'Cured' them...or so it would seem. But if they indeed suffer from the same symptoms as HCV+ individuals, decades down the road, after clearing the virus....do we consider THAT cured??? Just clarifying the underlying assumptions underlying the term 'Cure'. How about SVR's with the same long term extra-hepatic symptoms years after SVR? Is that fully 'Cured' also??? These are questions for everyone to ask themselves, not answers.
Just a few more thoughts.
DoubleDose
Now, when can we use the term "Cure", as in gone, eradicated, and never will return without outside infection? Possibly you could define a time period, maybe three years, maybe five years, in which, if no other SVR's are found to EVER 'relapse' beyond this point without being reinfected, then this could become a 'cutoff' point, and could then go from being a 'cure' to being a 'Cure!'. If we become certain, through tracking, and rigorous follow-up studies, that literally NO ONE really ever truly 'relapses' after a certain point, then we might be able to have a viable concrete definition for 'Cure'.
Currently, with some evidence of late relapsers, beyond six months, or one year of SVR, I think we have to be content to use a compromise term like 'cure*', maybe with the asterisk, and wait to learn more before assigning a hard and fast point for true 'Cure' status.
What do we do if we turn up a few who truly relapse after six or eight years, as the couple of cases were reputed to be in the immunosuppressive drug incidents published in the past few years? We don't know all the real details of these cases, but if they turned out to be true, then I feel we would have to remain using only the 'cure*' terminology.
I just think we need more definitive study on the issue, a consensus of results, and full agreement that there either: can be, or cannot be, late relapse, without having been reinfected.
At the same time, there is a question in the definition of 'Cure' as to whether that should also mean that problems resolve, or symptoms go away. How about spontaneous clearers of the virus, who have been found, by and large, to be very symptomatic many years down the road? They only had an acute, brief HCV infection, and their immune system cleared it, and in effect 'Cured' them...or so it would seem. But if they indeed suffer from the same symptoms as HCV+ individuals, decades down the road, after clearing the virus....do we consider THAT cured??? Just clarifying the underlying assumptions underlying the term 'Cure'. How about SVR's with the same long term extra-hepatic symptoms years after SVR? Is that fully 'Cured' also??? These are questions for everyone to ask themselves, not answers.
Just a few more thoughts.
DoubleDose
Well that makes sense to me, but I see this as a virus again much like chicken pox. Again this is MY theory.
I am not trying to take away anyones joy at SVR, or cure or remission. But I do not think all the facts are all in yet, that was my point.
Antibodies may not mutate, but they do remain, and as long as they are there I do not trust them, again MY theory.
Because my Docs tracked me so closely I can pretty be certain when I relapsed.
I would maintain there are many out there not posting on this forum or who have SVRed that have not re tested or followed up that have rrelapsed.
I have treated three times now, currently I am on infergen daily, ribo, and all the rescue drugs.
This is not a sour grapes theory at all, this are my and some very good Doctors, I have met with, concerning this. while I may be generalizing their words a bit. I feel there is a lot more to research to be done for relapsers and non responders.
I totally agree the facts need to be right, to include us.
You are very gentlemanly and I thank you for not patronizing me. I very much enjoyed reading your post. And the spirit in which it was given.
Deb
I am not trying to take away anyones joy at SVR, or cure or remission. But I do not think all the facts are all in yet, that was my point.
Antibodies may not mutate, but they do remain, and as long as they are there I do not trust them, again MY theory.
Because my Docs tracked me so closely I can pretty be certain when I relapsed.
I would maintain there are many out there not posting on this forum or who have SVRed that have not re tested or followed up that have rrelapsed.
I have treated three times now, currently I am on infergen daily, ribo, and all the rescue drugs.
This is not a sour grapes theory at all, this are my and some very good Doctors, I have met with, concerning this. while I may be generalizing their words a bit. I feel there is a lot more to research to be done for relapsers and non responders.
I totally agree the facts need to be right, to include us.
You are very gentlemanly and I thank you for not patronizing me. I very much enjoyed reading your post. And the spirit in which it was given.
Deb
I'v been clear since ending treatment 11/04... so about 31/2 years. Still scared ******** sometimes that it is going to come back... other times i KNOW it is gone forever... Eating good, living right... that all helps.
k
k
deb,
I'm a 2 time relapser and I understand the disappointment one can feel all too well. I hope your future allows you to attempt again with one of the newer meds coming to market in the near (3-5 years) future.
I do have to disagree with you on a couple of points. I only do so because I feel this is a topic that is extremely important to get right, according to the known facts.
"I do not see SVR as cured"
I'm curious as to when someone who is undetectable for HCV gets to use the word 'cure' ? Never ? That hardly seems fair. Even cancer patients get to use the word after a set amount of time has passed according to their type of cancer. There's never been a documented, verifiable, proven case of relapse beyond 3 years. Never.
You stated that SVR is just a theory. Actually, HCV lying dormant is just a theory. And with no proof of any kind to support it. On the other hand, durable SVR is a fact, born out by 12 year followup studies. In addition to that, post-mortem autopsy studies have shown the absence of detectable virus in some who cleared HCV infection through tx.. Viremia was not present in the sera as well as in the rest of the body, including the liver, of course.
I agree that many people do not know when they actually relapsed and some aren't aware right now that they have. That may be the case with you, as well. You may have relapsed right after 1 year post-tx and didn't discover the fact until 9 months later. So you may have, in reality, relapsed at 12 months, which is not very common, though not unheard of either. Appx 2-3% relapse after 1 year and over 99% of the remainder will remain SVR.
I have a friend who cleared on IFN monotherapy 14 years ago. Personally, I think he has every reason to use the word 'cure' to describe his eradication of the virus.
Antibodies do not mutate. The virus does, with HCV being the fastest mutating virus known. However, 99.99999 % of all mutations (quasi-species) only exist a few seconds to a few minutes. Wild-type virus lives just a few hours. (about 5). This seems to suggest that laying dormant would lead to the virus dying off rapidly through attrition. Another reason to doubt that theory concerning dormancy, in my opinion.
regards,
Mr Liver
I'm a 2 time relapser and I understand the disappointment one can feel all too well. I hope your future allows you to attempt again with one of the newer meds coming to market in the near (3-5 years) future.
I do have to disagree with you on a couple of points. I only do so because I feel this is a topic that is extremely important to get right, according to the known facts.
"I do not see SVR as cured"
I'm curious as to when someone who is undetectable for HCV gets to use the word 'cure' ? Never ? That hardly seems fair. Even cancer patients get to use the word after a set amount of time has passed according to their type of cancer. There's never been a documented, verifiable, proven case of relapse beyond 3 years. Never.
You stated that SVR is just a theory. Actually, HCV lying dormant is just a theory. And with no proof of any kind to support it. On the other hand, durable SVR is a fact, born out by 12 year followup studies. In addition to that, post-mortem autopsy studies have shown the absence of detectable virus in some who cleared HCV infection through tx.. Viremia was not present in the sera as well as in the rest of the body, including the liver, of course.
I agree that many people do not know when they actually relapsed and some aren't aware right now that they have. That may be the case with you, as well. You may have relapsed right after 1 year post-tx and didn't discover the fact until 9 months later. So you may have, in reality, relapsed at 12 months, which is not very common, though not unheard of either. Appx 2-3% relapse after 1 year and over 99% of the remainder will remain SVR.
I have a friend who cleared on IFN monotherapy 14 years ago. Personally, I think he has every reason to use the word 'cure' to describe his eradication of the virus.
Antibodies do not mutate. The virus does, with HCV being the fastest mutating virus known. However, 99.99999 % of all mutations (quasi-species) only exist a few seconds to a few minutes. Wild-type virus lives just a few hours. (about 5). This seems to suggest that laying dormant would lead to the virus dying off rapidly through attrition. Another reason to doubt that theory concerning dormancy, in my opinion.
regards,
Mr Liver
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