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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?
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Avatar universal
The best way to track all this is after SVR make sure you have blood work done  often.

I track all my labs. I have my ducks in a row.  

Patients can be tracked, after 3-5 years if your svr has been succesful.  Not sure I would bother.  

Someone like me you can bet on it, I will test often.

Bottom line is relapsrers may be a minority, but we and non responders need focused studies on us.

Deb
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Avatar universal
I also share your concerns.  How many doctors are looking for and testing for late relapse, and if it does occur, do they just label it a reinfection, and let it slide?  We just don't know how this issue is being handled, by and large, across the physician/ patient landscape.  Is there a 'protocol' that is recommended for doctors who treat HCV, regarding patients who test positive for the virus after having been SVR for a period of time?  Are they required to, or recommended to report these cases to any particular data collection group, or agency, or even to just track these cases themselves under a specific heading of relapse?

These are things that we have little information about.  I am not even sure if patients are generally tracked beyond three to five years by many doctors.  So, do we have airtight data on the real rate of relapse?  I am not sure that we do.  I would like to hear more from the medical community on how they track these issues, and how thoroughly they investigate cases of  'supposed relapse'.  

DoubleDose
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Avatar universal
DD, I agree with you on everything you have said about this subject. I have always felt very strongly about this as far as the immune system keeping the low level viron under control etc and I also agree that Mr. Liver is on the same track.

Mr. Liver, your statement, "Personally, in 8 years I haven't been able to find one case of relapse beyond 2 years post-tx in any medical studies," is a good point and comforting. But, I do wonder if doctors report something like this and it gets 'added in' to the 'studies,' though the person really isn't a part of a study, just something that has taken place in a doctors private practice. I would hope that IF there are a few cases here and there that doctors do see (people relapsing after 3 years or so), that it would be in some central data base and not just 'possibly mentioned,' IF even that, at a conference. I really don't know the answer to that and if someone knows the answer of "what does a doctor do with the info IF one of his patients relapse after a 1, 2, or even 3 years? Does this get documented somewhere or does he see it as ' Oh well, it was only 1 person out of 500 hep c cases I have." Because if all the doctors let that info fall by the wayside, the stats would be off of course.
But then again, I really don't know the answer to this, and if I remember I will ask my hep doc.

thanks guys,
MO
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Avatar universal
I can agree with everything that you stated above.  Your comments, by the way, are not contradictory to mine, in that I really do believe that any remaining low level persistent virus probably remains just that way, over the years...contained, undetectable, and under the control of the immune system.

I am not sure whether the couple of claimed SVR late relapses, specifically the immunosuppressive patients we have read about, are actually valid relapses, or just claimed relapses.  But in those couple of cases, if they were in fact true relapses, after seven years of SVR, were probably an extreme rarity, and were caused by shutting down the immune system almost completely with immunosuppressive drugs.  These would be potentially understandable relapses, if they were actually real relapses.

I would think almost every SVR out there should be durable over time, whether five years or thirty-five years.  Still, that does not mean that there is no HCV still present in these SVR's, silently reproducing at extremely low levels, and maybe in various compartments or organs.  This HAS been proven by many research studies over the past five years. SVR has not been shown to equate to TOTAL HCV eradication from the body.  The significance of this reality is what has not been determined yet.

Anyway, this is how I see things in the current HCV state of knowledge.

DoubleDose
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Avatar universal
" I have seen stats somewhere...I know it does happen..."


When it comes to late relapse many seem to remember seeing something on the topic, but when pressed, no one can ever find it.

I don't think its likely that anyone can find documented, verifiable, cases of relapse in  medical literature beyond 3 years. In fact, finding one using this criteria beyond 2 years may prove to be impossible. Personally, in 8 years I haven't been able to find one case of relapse beyond 2 years post-tx in any medical studies. Nor can my hepatologist who has treated HCV since it was discovered. Anecdotally, you will hear of these cases, of course. Many times these claims involve long lapses in post-tx testing that make it impossible to determine the actual point in time of the relapse. If late relapse was a clinical feature of HCV it should be extremely easy to find many documented,verified cases of it in the medical literature.
Logic dictates that with well over a million people having treated worldwide that the medical literature should be replete with numerous examples of late relapse despite any low prevalence factor that may exist for its occurrence. Yet, none is to be found, even among the many followup studies on SVR patients, some of which have been ongoing for more than 12  years .
If this were a trial the judge would throw the case out for lack of evidence. ; )
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Avatar universal
Agrees there are false positives, But if that is what mine was it came rom a pretty big VL.

Agrees again Double,   I think that saying "oh it must be a false positive" is an easy answer, specifically when you got tested often by different labs.  

I will also quire frankly, I know my own situtation, I know it to be true,  I know what happened. I was tested in labs in Europe, Arizonia and Calif.  They are were all false positives?

Sure don't think so.

There is a huge difference between someone who was UND at end of treatment, and one who  does stay that way at month test, and one who has gone  9 months after 6 month PCR, was SVR, then relapsed.  

The two should not be confused,  

  Double I truly think that is what happens, they are so low, they hide out.  I treated 48 weeks last time, perhaps I should have went 72.

Well said again Double
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Avatar universal
As an additional comment, I will say that of course there are probably some valid false positives that occur, but I think there has been a pattern to some of these supposed 'false positives', and I think we should think about different explanations other than just a 'faulty test result'.  Maybe the test result is trying to educate us to another aspect of the virus, or a phenomena that we are not considering when these things happen.  Maybe we can be SVR, but have sporadic low level positive tests from time to time, nonetheless.  This would be a perfect explanation for the low level fleeting positives on some of these tests, if indeed the virus is now in a state of 'controlled remission' in SVR's.

DoubleDose
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Avatar universal
Of course there is another way to interpret these low level 'false positives' that some see on post-tx testing.  Some seem to receive these 'low level positive' labs shortly after finishing tx, and being undetected for many months.  Most or all of them seem to follow up with labs that indicate fully 'undetected', or SVR.  My own thought is that maybe we are just seeing low level fluctuations in the virus, slightly above the level of detectability, and then the immune system gets it under control, and it goes back under the 'radar screen'  (our current level of sensitivity testing) to show the SVR.

Maybe this is just the good old 'persistent virus after SVR' that we read about in the research.  I would think that it probably stays well below 5 IU/ml, and thus shows undetected even on the most sensitive tests.  Only right after discontinuing interferon tx do we see a little up and down on the persistent stuff, as if it is testing the boundaries, or the 'wall' erected against it.  Maybe later, over the years, we have a few of these on and off, up and down, system tests, with the virus climbing a little bit over the normally detectable barrier on testing. This may especially happen when our system is under extra stress....surgery, illnesses, intoxication, etc. Then it goes right back to super low levels for the next test, so everyone assumes the positive result, of maybe 40 IU, or 70 IU, or 120 IU, etc. was just a 'false positive'.  Well, maybe it is really a low level positive, but not a true reactivation of the virus.  If the 'remission / persistent virus 'theories are valid, then this is possibly a better explanation!

That's my take.  

DoubleDose
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Avatar universal
Just read more and the girl had received a FALSE POSITIVE!!! (Thank God!)
Boy it shows how we can't always trust those tests! Scary.
-------------------------------------------------------------------------------------------

In Response To: Late relapse (Claudia)

Well there really are false positives. My friend went and got another test and came back undetectable
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Avatar universal
I just found this on another site.....

http://www.hepcnet.net/boards/medsforum/index.cgi?read=9807

Aloha all -

It has been a long time since I have posted ~ I guess that is what happens when you clear with a SVR and get on with life!

Question: A friend who cleared about the same time as me - 4 years ago - just got her latest RNA back - 700 of the little buggers running around after being >50 since treatment. She currently is having gall stone problems as well.

Any feedback on the statistics or probability of this happening? Is there a chance of faulty reading because of gall stones?

Obviously she is freaking - wouldn't we all after 4 years - so any info is appreciated.

So aloha to all old friends from way back and aloha to all of you who do not know me -

Mahalo,
Claudia


In Response To: Late relapse (Claudia)

Unfortunately, that is not the first case I know of personally. Remember Mike Childress? His buddy relapsed after 5 years. I have seen stats somewhere...I know it does happen...I would not think the gallstones would affect a PCR  
Nice to see you  



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Avatar universal
The sort answer is that I think they tested blood form my liver. Let me get a real answer. Mike
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Avatar universal
I cannot answer that question, unfortunately. I could guess at it but that would only add confusion. I did ask about the testing procedure some time ago and I think I did get the answer but I didn't retain it, probably because of some other pressing issues that were paramount at the time. Willing and I tossed this around when it was fresh and that is what prompted me to ask about it.
I will ask right now but I probably won't have answer to you before Monday and likely Tuesday.
Sorry about that. Mike
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Avatar universal
I so like the way you all think!  

Honestly somehow for me, i do beleive the steroids masked some  remnants of my HCV.  

I had a lot of internal injuries as well as broken bones, collapsed lungs.  I was on a lot drugs, in a coma for so long, when I woke up and returned to Germany, my levels had soared to the 900.

There was a huge questions, concerns about me starting treatment for HCV.   I was told directly that very few people come back from where I was, they had to figure out how to unravel so many drugs. The main concern was saving my life.

Truly sometimes I go back and forth,  was it because of all that why i relapsed at so late a date? or am I merely a non responder.  Talking to the Docs, then and some not so long ago,  I tend to think more the first.

There are so many questions, and time is the answer and the key.  I guess that is what bothers me most,  are standard answers.  

That we can discuss these things, may not solve anything, but for me any way they help to sort things out in my mind.  This is not a topicl you can discuss with most Tom, Dicks or Harrys! Ok in this case Mikes, doubles,  and all the other contributers!

Deb
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96938 tn?1189799858
There's a question I've been meaning to ask you for a while and reading your posts prompts me.  When you say 'biopsy report indicated 30 IU/ml HCV ', I think in terms of the typical pcr result that equates to 30 international unit per ml of BLOOD.  In terms of testing a biopsy, which I'm thinking is tissue and not blood how do they come up with the result of '30 IU/ml HCV'?  Is it just that the substance tested is tissue and the result reflects  30 international unit per ml of TISSUE?
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Avatar universal
I want to make it absolutely clear that I had no reactivation of the virus, at least insofar as a serum detectable virus is concerned. I was undetectable per Heptimax just a week or so before and after my liver biopsy, which did show a trace amount of HCV.
It was my immune response that was the issue. But, I cannot be 100% certain that it was the tiny bit of HCV that my immune system was responding to when my liver cells started dying and releasing enzymes. I can't rule out completely that I might have been in a minor organ rejection state. I sincerely doubt that is the case because my surgeon seemed certain that HCV was the problem from just looking at my labs - before he was even aware of my biopsy report he thought it looked like HCV.  Transplant surgeons see a lot of organ rejection and I wouldn't think mine would have immediately suspected HCV from my labs if they looked anything like organ rejection. And then when the biopsy report indicated 30 IU/ml HCV that, more or less, cinched it as far as I was concerned. But really, it's hard to be absolutely sure about this stuff. He did raise my immunosuppressive dose and he did put me on the mini TX so, in one sense, it looks like he used the shotgun approach. You know, where you shoot at everything and hope that you end up hitting the right target. And when he told me about the organ rejection issues that he sees when patients appear to have eradicated every detectable trace on the virus it all seemed to fit into what I term a truce between the HCV and the immune system. Another thing is that I get tested every single month for HCV and I have to wonder why they are concerned so much that they order monthly testing. My personal opinion is that for a lot of SVRs a truce does get established between trace amounts of HCV and the immune system and that the  truce is durable and it does confer tremendous benefits. When I ask myself if a major jolt to the immune system could upset the  truce and lead to virus reactivation in those patients who do still have trace amounts of the virus in their bodies I answer "yes, I think that's possible". If it weren't a possibility I wouldn't think that they would be testing me every month? Perhaps the fact that my immune system is being compromised subjects me to risks that are not at play in the non-transplant population.
There is no doubt in my mind that this is a very complex and multi faceted issue and the standard simple answers do not explain many of the issues that have been raised here and elsewhere. It's going to take time baby - it's going to take precious time.
Be well DoubleDose, Mike
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Avatar universal
I so agree with that as well and I really have enjoyed this conversation it was  friendly sharing idea of ideas,  new thoughts, and was all done in the spirit of not being  right, but with positivty and learning.  Polite and with respect.

This is what a debate and a sharing ideas is and to mind should be.

I have learned much from this thread,   changed a few thoughts on things, and am pondering some new ones.

Thanks to you all

Deb
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Avatar universal
This is actually a very enlightening, and cutting-edge thread, in that I think we all have helped to better explain, to ourselves, and to readers of the forum, what the current understanding of 'cure' might include, or not include.  We all can draw our own conclusions from the above information, and work toward a clearer understanding of what SVR really means.  This may be a slowly moving target, in that we may add new bits and pieces of information as science moves along, and eventually bring the entire picture into sharper focus.

Terms are great, but there is much 'squishy stuff' often behind them, as Mike's very interesting saga illustrates.  Definitions and rules often are not fully black nor white, and many times have little exceptions written into them.  I love the open minded attitude of inquiry and discovery on this forum, and hope that we all can continue to have meaningful dialogue about all the aspects of this virus.

Mike, thanks for the very detailed explanation of your history, which illustrates, at least in one case, that SVR is not as simple, or clear-cut as we may always assume.  There MAY be 'balance points', triggers, hidden reservoirs, immune system control issues, total eradication (in some), and who knows what else!!!  The point is, that the more we learn, the smarter we can deal with the long term recovery issues, and the better we can devise more effective, more complete treatments farther down the road.

Maybe we can also  gain a clearer understanding of what might possibly impact SVR status (as in Mike's somewhat unusual case), and whether there is any possibility of triggering a possible 'reactivation' of the virus, or on the other hand, whether there is more like a 'zero' probability of actual reactivation, under ANY circumstances.  These are still somewhat grey areas, and the numbers and answers will continue to fill in the picture on their own,.  

The 'straight' talk in this thread, while not giving a sense of 'la-la land 100% comfort and assurance', still provides a strong sense of realistic high probability that SVR is pretty darn solid.  The door is kept slightly open, but is still  substantial and strong.  Let's keep learning and asking for more answers.

DoubleDose
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Avatar universal
I am fine now and don't need a new liver, thankfully or treatment. My surgeon put me on an increased dose of my immunosuppressive drug and low dose ribavirin (250 mg daily) and half dose Pegasys for a 6 month duration  -June through Dec. My enzymes settled down shortly after I started and now they are back in the low teens and have been since around December 2006. I mistakenly said that this started in 2005 - it actually started in 2006 and my biopsy was on June 3, 2006 and I stopped the mini TX in Dec 2006. I don't need to treat again because I am still serum undetectable. There is a difference between being  serum undetectable and complete eradication.They are not always coexistent. I always get confused about 2005 and 2006. I wrecked my bike in May 2005 and reduced my anti rejection dose in April/May 2006 and then got into trouble - I get them confused sometimes. I apologize for the confusion. Mike
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Avatar universal
Never read this post, great info. Thanks
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Avatar universal
Wow!   That was intense!    there is always so much to ponder, so many  individual  keys that can effect us.

For me I think it was the steroids after accident.   Do I have proof no..  But has a Doc totally thrown this to the curb? no...    Is there a lot to prove that is correct? NO/

I need to read this about 5 more times Michael to absorb it.    I will.

But thank you so much for sharing,  I know it had to be hard to go there again. I admire you so much.  

Will you transplant again? or treat again? Have you heard about the sheep and livers?

Again Mike you are one hella guy!

Deb
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Avatar universal
I have told this story before so I apologize for being repetitive.

I was transplanted in June 2000 for HCV. I treated two times - the first TX I was never undetectable due to low doses of both TX drugs. The second time I became undetectable late in treatment and relapsed when I stopped - I believe the relapse was because my ribavirin dose was inadequate.

Then I treated for 73 weeks with optimal doses of both TX drugs and became undetectable by week 11 or 12 at the latest. I stopped TX in June 2004. I have always tested monthly with Heptimax tests < 5 IU/ml and have been undetectable since April 2003.

In late April my anti-rejection drug was drastically reduced (my center tries to reduce these drug doses and in some instances completely ween patients off, if possible).
My enzymes, which had been in the teens since 2004, suddenly began to elevate rather rapidly. We continued the reduced anti-rejection dose and watched my enzymes continue to elevate with the hope that they would settle down. I became alarmed and called my surgeon and he ordered a liver biopsy. I had one on June 3, 2005. This was on a Friday.

The following Monday morning I was in my surgeon's office and he was looking through my chart. He said: "it looks like hep c to me."
I asked him what he was looking at and he said "your labs".
I said "what about my biopsy" and he replied that he'd been in South America and just got back so he didn't know I'd had the biopsy. The nurse found the report and showed it to him. He said "yes, it's hep c".

I was floored. I had been undetectable for well over a year and off drugs for just weeks short of a year. But, he wasn't the least bit surprised and, in fact, could tell from my labs and the enzyme increases that it was related to HCV. The biopsy merely confirmed what he'd already suspected.

My biopsy showed HCV in my liver at a very low viral load - 30 IU/ml.
I asked him how this could be. He said that when my anti-rejection dose was reduced it stimulated my immune system and that it began attacking the tiny bit of HCV in my liver and in the process bystander cells were attacked - a sort of biological collateral damage - which was reflected in my soaring enzymes.

I was torn because I had been afraid that I was rejecting my liver so it was a relief that I wasn't rejecting but, the fact that HCV was detected in my liver was a total surprise. I never even considered that possibility. I thought I was completely clear - after all I tested monthly with a very sensitive test. I had tested undetectable just a week or two before my biopsy and, incidentally, again 2 weeks after my biopsy - which was also undetectable.

I asked my surgeon what percentage of the non transplant population SVRs did he believe would show HCV on biopsy. He said about 75%. I asked him if it was like my immune system and the HCV had entered into a truce that got broken when we reduced my anti-rejection dose. He replied that I could look at it that way if it helped me to understand it. Then he said a couple of things that I found intriguing - well, I found all of this stuff intriguing to be straight with you.

He said that my center likes to reduce immunosuppressive doses but with HCV patients it's very tricky. It's quite different with transplant recipients with other underlying diseases but with HCV transplants they often run into problems.
Then he said: "When we completely eradicate every trace of HCV in a patient we frequently run into organ rejection issues". I asked why he thought that was. He responded that perhaps the virus has immunosuppressive properties - that perhaps a little HCV is good for me.

I think that one of the salient points, aside from the obvious ones, is that my surgeon wasn't the tiniest bit surprised to find HCV in my liver. It was like "yeah, it's HCV".
I would guess that the fact that I am immunosuppressed might be viewed as a distinguishing factor which makes my experience unique and not applicable to the general population. Perhaps that is true to some degree. But, how many SVRs undergo biopsy? I doubt there are many and I also doubt whether a typical doctor would look for HCV in an SVR biopsy or detect it.

The other interesting point was that my surgeon noticed an increased incidence of organ rejection in those patients who appeared to have eradicated every trace of HCV with treatment - that it may possess immunosuppressive properties or or effect an immunosuppressive response.

I personally believe that we can use the word "cure" notwithstanding the possibility that some degree of viral activity may still exist in some or many SVRs. I think that SVR has been proven to be durable and it certainly confers tremendous benefits to those of us fortunate enough to get there. I don't rule out extra hepatic issues that might exist post SVR in some or many of us and I too would like to see more research into this area. I do believe, however, that the focus of research should be trying to get better approaches to allow more people to achieve SVR with less treatment related sides and persistent health issues caused by current treatment. Once we get a better grip on those issues then maybe more attention will be focused on the issues that DoubleDose is concerned about. I certainly think they are important issues that do need to be addressed.

Mike
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Avatar universal
Thank you to everyone, I got all of the information I was hoping to get.  Some GREAT and some not.

I am nearing the end of my tx and am getting excited about just being done.  I don't ever want to take it again.  I just wanted to get a feel for the success rate.  My doctor discouraged me by telling me that the 50% success rate of people being 'cured' included all of the people that finished tx and were SVR and then relapsed.  Then when you read about people relapsing on this forum it can be discouraging.  

Personally, I am going with the 1 yr mark.  If I reach SVR 1 yr post tx then I am going with 'CURED'!

Thanks again,
TV
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Avatar universal
Double thanks,  you always find the way to clarify what I am trying to say!    I know what I mean but often I can not the correct words.  

I think that this virus is wiley,  I know people who have had cancer, had huge chunks of their bodies cut away. Been radiated, chemoed,  "cured" then 8 years later it has returned. Surgeons will tell you, there is no way they can be sure 100% it has all been cut away.

I do not understand that cancer and hcv are NOT the same things.   But I think in my case a there was a little bit of the virus "hiding" out.  So the same theory applies.

Mr Liver, thank you again,   as hard as this is, it is doable,  infergen does not stay in your body like Peg,   I am thinking if this time I do not go UND, then SVR,   I will try one more time the alinia. But that is not for sure either.  I truly do not want to spend  the rest of my life sick, I want to enjoy a good quality of life and  enjoy my family.

I wish you all the best, mr Liver.  

With kind regards
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Avatar universal
You have my best thoughts for a successful conclusion to your treatment this time. I truly cannot comprehend doing interferon/riba daily, and I hope that the effort it must take results in a positive outcome for you.

"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 relapsed. "

I'm sure you are right. From a statistical point of view there has to be people that fit your description above. Obviously, those who do not have another followup beyond 6 months post-tx contribute the largest share of those who have relapsed and are not aware of the fact. I'm not sure just how prevalent this subset of those who SVR and relapse after EOT without awareness of the fact, are. Whatever this number is, one has to consider that the majority of them never would have needed tx in the first place. This diminishes the significance of relapse in the overall population greatly, although this is rarely mentioned.
I wish I was in that majority, but like you, I have not been able to eradicate it.Yet. :)

regards,
Mr Liver
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