If negative 6 months after 48 weeks treatment , did anyone relapse?

[WillPower]

I had 48 weeks combination TX as a genotype 1A with EVR, age 66, male.  Now I have negative TMA 3 months post TX, progressively feeling better (still with diminishing side effects) at 4th month (today). I live a "perfect" diet life style, no drinking...etc, lots of willpower, but my doctor says no alcohol for 5 years post TX!

Apprehension "lives" in me, as with all of us, moment by moment as we assess our physical state.  I am not allowing too much "hope" to exist, staying optimistic, because I want to be psychologically capable of handling the possible disaster of relapse.  

After 6 months post TX negative TMA test as a 1A, assuming no exposure, how many people relapse?  

Thanks for your help. The people in this site are wonderful.

[WillPower]

That is very good news Ina.  You are correct.  I read this every day for about 30 minutes since discovering this group shortly after 48 months tx.  At first I read about relapse and got a little more scared, but not too much.  I tended to stay away to stay optimistic, but I also had post tx symptoms almost equal to the worst stage of HCV.  Now, I am getting much more interested.  The two of you amongst others have been wonderful for all of us.  Thanks for your enlightenment.  I am elated of success' you mentioned!

Jim, I did presume that once svr, that age, genotype...etc. were no longer predictive of post 3-6 mo relapse.  It is wonderful to find that members of this forum follow us newbee's so long into late threads.  Thank you.  This is sooooo great.  Al

[Eisbein]

You said: You are the only person I have heard of that was stage 3 that made it!

I guess you are new here and have not been reading very long, but there are quite a few stage 3 and 4 here who have made it.
Goofy, new sojourn, LvdbyGod, myself come to mind.
New sojourn was endstage, given 3 weeks to live, and made it on the old 3 times a week Intron.
If you get an opportunity ask Cuteus, she keeps better track of stuff like this.

Ina

[jmjm530]

WP:I have been under the impression that relapse is mostly an age thing in the 1A-B group, followed by EVR, followed by tx and of equal weight duration if greater than 48 weeks.
===============================================
I think you're confusing factors that can influence SVR and SVR itself.

Age, along with gentotype, viral load, etc, can influence whether you will achieve SVR (cure).

However, once you achieve SVR (non-detectible six months post treatment) then that SVR is durable -- meaning you stay non-detectible per the statistics in the studies previously cited. And again, many consider being non-detectible three months post treatment (like yourself) just about as good as being non-detectible six months post treatment.

-- Jim

[WillPower]

Jim, thanks very much for your background and your thoughts about relapse.  It helps me a lot.  I have been under the impression that relapse is mostly an age thing in the 1A-B group, followed by EVR, followed by tx and of equal weight duration if greater than 48 weeks.  I have 10+ years (age 66 as mentioned) on you, but if you are holding up with stage 3, that is a very positive sign, given that SVR is fickle and/or random, it seems, I might start resting mentally a bit. What you say must be true because my doctor did not congratulate me at the two month TMA, but made a big point of it with the 3-month reading.  

[Side topic which you alluded, regarding sensitive topics:  Wouldn't it be nice if truth held more importance than being more "correct" than the next guy? Or, more important than taboo subject matter?  It would seem that finding the truth, the correct thinking/reasoning would be more important than being the implied "smart one" in our culture. The "team effort" clearly predominates in this forum.]

Thanks, I can rest easier at this late hour even with the insomnia.  Al

[jmjm530]

I'll relate my tx experience as best I can in terms of your comments and concerns.

Started tx at age 58, 1b, pre-tx viral load 1.5 million, stage 3. Treated 54 weeks with 1200mg/day ribavirin and Pegasys. RVR (non-detectible) at week 6 via sensitive TMA. Currently 9 months post treatment and still non-detectible.

I had what I considered a reasonably good diet pre-treatment but once tx started everything went out the window as I quickly started to lose both weight and appetite. My tx diet henceforth was simply to survive tx by eating enough calories to stop weight loss and whatever foods stimulated whatever taste buds were left. Unfortunatly, these foods were not whole grains and vegetables (couldn't look at a vegetable during tx) but were what might be considered "comfort" foods, somewhat high in fat. About 12 weeks post treatment, I regained some weight, my taste buds returned and now I'm back to my pre-tx diet that includes lots of vegetables, fruits, grains, although I'll confess that I had some pizza less than an hour ago :)

Here are a couple of studies I found quickly regarding the durability of SVR. There are others plus more recent commentary. Bottom line is that after being non-detectible six months after tx (SVR) relapse is rare, and after 1 year, almost unknown, although there is one case that keeps being cited of someone who relapsed after being SVR for 7 years after undergoing some sort of immunosuppresive therapy. Keep in mind this is one cased out of how many tens of thousands?
Couldn't find the article that basically equated your 3 month negative with the six month (SVR) but what it basically said was that being viral negative 3 months after SVR correlates very well with being viral negative 6 months after SVR. Of course you will breathe easier at the six month point, "but you would have to be exceedingly unlucky to relapse from here on out" -- these are the words of one of my liver specialists when I was non-detectible at 3 months post treatment. A couple of studies on the durability of SVR:
http://www.natap.org/2004/AASLD/aasld_20.htm
http://tinyurl.com/l4w8x
Regarding alcohol, both my doctors told me it was OK to drink in social moderation as soon as 3 months post treatment. "Social moderation" was defined by different doctors I've spoken to as anything from 2-3 drinks a week to no more than two drinks at a sitting. In actuality I probably have averaged one or two light beers a week (if that) since I stopped treating and lately been substituing a glass of red wine for the beer both due to variety and studies (plus my liver doctor) that suggest cardiac benefits. This is a very touchy subject here so I'll leave it at that and only mentioned it because it was a point you brought up.

Hope this helps and let me know if I can add some more.

All the best,

-- Jim

[jmjm530]

Let me just try to summarize simply what my doctors told me in regard to my own concerns about relapse -- which basically are pretty much everyone's concerns.

Basically what he said is that of course it's important for both your liver and general health to lead a liver healthy lifestyle which includes watching your diet, weight, and not abusing your body with drugs, alcohol, etc. -- BUT that is not to say that anything mentioned will bring back the virus. In other words, once the virus is gone from your blood, it's gone, per the studies cited, regardless of what you do, other than reinfect yourself of course. They were pretty emphatic about that.

-- Jim

[WillPower]

Thanks so much Jim.  I noticed you are 58, UND, slow EVR, and tx for 58 weeks.  I went 48.  At my age, 66 after feeling better and better and being UND after 3 months, I am optimistic.  However, I am curious, did you pamper your diet, sleep, living protocol, or did you continue with the usual American diet?  You are the only person I have heard of that was stage 3 that made it!  Congratulations! That is a major source of encouragement for people like reviere_____.  Also, if you see this post, do you happen to know of the "studies" you refer?  (Don't take much/any of your time to find, unless it is on the top of your head.)  Thanks for your response.  Very helpful.  Al

[jmjm530]

If you're negative six months post treatment (SVR) studies suggest you have around a 98-99% chance of remaining non-detectible. After being non-detectible one year, that increases to close to a 100% chance of remaining non-detectible. Recent studies suggest the 3-month post-tx negative correlates very closely with the six month (SV) and in fact, one article I believed called it the "new SVR", or something like that. So, a slightly guarded, but pretty certain congratulations is in order !

That said, I believe we have one member -- RTS?-- who relapsed between the 3 month and six month post tx test, however  on re-test he was negative, therefore it may not have been a relapse and a third test should present a clearer picture.

All the best,

-- Jim

[WillPower]

I meant "well", not "will" at the end/ending.  Maybe it was a Freudian slip: it takes will to get well.

[WillPower]

I am glad for your comments on this site.  I too find the people here are wonderful.  I also think the "managers" whoever they are must be doing excellent work to create this group quality.  It is hard to hold the reins, almost a thankless job.  Good God, I chose "WillPower" as my logo on this forum because it took HUGE willpower for me to stay "sane" on interferon, Ribavirin, procrit, and the associated fear...etc.  I love this site.  Like you it is my primary site.  I have never seen so many caring people that devote their time to each other!

[WillPower]

As mentioned, I attacked my Hep C soon after infected with 1A.  Tests had huge numbers: RNA 3,100,000; AST 1,820; ALT 2,630 and off the charts on everything!  I never had a biopsy.  I started mono-therapyPegintorn120mcg/week and had EVR in 13 days for only 12 weeks, relapsed instantly after doctor, that infected me, stopped the tx!  Restarted 4 weeks later, mono-therapy, same dose, switched doctors when s/he did not want to give me Procrit, and new doctor immediately put me on combo-therapy, with Pegasys of 180mcg/week and Ribavirin 1200mg/day and procrit 40,000 per week. S/he said a minimum of 48 weeks was needed.

I believe, but I am no expert, that the liver can heal. IF ONE DOES A VERY CLEANSING DIET.  I believe in being gentle on the liver, including avoiding most supplements and herbs, and of course no drinking.  I switched to a macrobiotic diet -- not as a "religion, devoted brain-dead, closed minded" mentality -- but to avoid the fat and high glycemic sugars that other diets allow!  However, I do occasionally have a little sugar such as apple pie; but VERY LITTLE.  I believe sugar and fat are the two liver stressors.  I bought a rice cooker which is the best thing I ever did in this process. I know this is controversial, but I did enemas once a week.  Originally when I was feeling like suicide (figuratively only), I did enemas three or four times a week.  THEY MADE ME FEEL ALMOST LIKE A NEW MAN FOR A DAY!  Distilled water, of course and lots of reading on the technique.  It can be dangerous if you do not know what you are doing. I had a horrible tx hangover for two months post-tx.  I thought I had relapsed.  I strongly, personally, that is, am against too many supplements just to give the liver a rest.  I have a green power juice extractor and juice every day and take in 16 ounces of pure vegetable juice.  I stay away from fruit.  This is me, not for others.  They must talk to their doctor.  I talked to myself and did reading because doctors do not believe in diet as "major" even in a small way, means to health.  My cholesterol went down, for example, and doctors never tell people about diet.  Instead, they prescribe drugs to lower cholesterol!  I have learned to not let my "beliefs" own me and to be open minded.  I have learned that I can be my own worst enemy and con my self into any belief out of wishful thinking. Truly, from the bottom of my mind/heart, I believe -- if you have willpower -- you can heal yourself. The very best to you. Thanks for your contributions to this forum.  Oh yes, without "giving up" yourself, I think it is healthy to help others, if you are able, when you can; but get will first!

[WillPower]

This is why I think the body can heal itself if you have top notch diet, rest, mild exercise (movement only), lots of water (I used distilled), enema tx (with knowledge!) and lots of sleep using melatonin (9 hours minimum):

After the RNA 3,100,000, AST of 1820 and ALT of 2630 I started IV vitamin C to boost the immune system. IV was, of course large doses.  14 days later, I was AST 960, ALT 1872.  18 days later, I was AST 660, ALT 1470 and RNA 384,300!  I took the first Pegintron 21 days later, six days after that I was AST 170, ALT 510.  13 days after Pegintron I was negative RNA and AST 60, ALT 170.  One never knows what they will "really" do if they relapse, but I think, I would opt for the intense healthy eating/lifestyle approach and intense cleansing.  Check into the Gerson Institute on the cleansing issue.  Why would I go this route?  Because I learned how HUGE the withdrawal, symptomatically, is from the "drugs"!  This forum can attest to that.  BUT IF I HAD NEVER TRIED THE COMBINATION TREATMENT, I WOULD TRY THAT FIRST, along with the above lifestyle.  

Bottom line, I think that if you have the desire -- you cannot buy it -- the probability is very high that you can win this battle!  I would not start the path unless you are dedicated.  It MUST be continuous, IMO.  

If I can improve so dramatically WITHOUT the drugs, why not do the drugs with an immaculate life style and let the liver heal enough to win with the help of the drugs?  Just thoughts, not advice.

You are a good person, you deserve to win this battle.

[mremeet]

You're right, I looked up pro bono and it's mostly defined as free legal services for the common good. What I meant was (as you accurately described) a lawyer that would charge no money up front, and would only retain a fee as a percentage of any successfully awarded financial compensation (usually a 1/3 of that awarded). If the lawyer failed to win the case, no fee would be incurred to the client. So thanks for the clarification, apologies for my poor usage of the English language. I'm still learning!

Oh, and I hope you're appreciating the fact that I'm taking on some of the ire of the 'ire-some' one? lol ;-)

And iresome one: You're noticed. You're important. People love you. You're a man to be reckoned with. People aren't taking you lightly. You're a person of consequence. What you say counts. Your thoughts are greatly regarded. You're definitely *not* a deeply embittered, lonely, logic addled, online sociopath desperately craving attention.

Nope, that's not you at all. NOT ONE BIT!

LOL

[Kalio1]

Just wanted to say that a medical malpractice lawyer does not work "pro bono" but rather they take their compensation on the back end. However, if you lose you risk having to pay some costs and also risk having to pay costs of your opponent.
Pro Bono means for free. Although you do not have to pay at all upfront, in the end you pay. If you win it is deducted out of your verdict/settlement. The vast majority of cases do not see a courtroom. Usually your silence is another thing you "pay" with. You agree to keep your trap shut about it for X amount.

[WillPower]

Thank you all for your GREAT help.  My first question on this forum, no less, after being a member.  I joined post-tx, but NEEDED this forum DESPARATELY prior to that time!  

Sfbaygirl and Better_Angels even read AFTER much time passed!  You are so nice to do so!  I do feel content with ultimately getting an answer.  The best to all of you.

[Kalio1]

I'm glad to hear you have conquered the rash. I feel even with the challenges you have had that you are still on track for SVR. I can't wait for the unblinding! I hope they honor their promises in a timely fashion.

It is disconcerting that the rash appears to be relatively widespread, I hope they can resolve it. It seems to me that duration contributes to it so maybe they can adjust accordingly and avoid the problem while retaining the most excellent probable benefits. Time will tell. You survived it and made it to SOC and that bodes well for your success in my view. It must have been  h e l l for all you guys who had to deal with it.

I do indeed notice, I've gotten some good chuckles out of it too.
I appreciate it as I do all your articulate and well presented input.

[mremeet]

Thanks for the encouraging and kind words. Yep, I'm anxiously waiting for my unblinding too, although I already know I wasn't in the placebo group. Mostly I want to see my PCR's, really hoping I didn't have a viral reappearance during my steroid junket. Otherwise I know the drug initially worked for me, it cleared the viral scum right out very quickly. And the worst case scenarios (VX rashwise) that I know about are myself and PDS. But even in our cases, we could (and still might) have derived an excellent benefit by simply stopping the VX right off at 50 days or so. I would imagine that would still significantly enhance SVR odds if one were to continue with SOC for a normal course after stopping the VX (although we don't have enough data to say that yet).

Anyway, lets all keep our fingers crossed that VX will pan out to be another powerful tool in the growing anti-HCV arsenal (albeit an imperfect one). Take care...

[sfbaygirl]

I worry too over every PCR, lab result etc. I am sure it will be even worse waiting those 6 mos. post. But you have made it 3 mos! You have an excellent chance of SVR. Good you found us now, it's never too late.

[sfbaygirl]

Sorry, we did digress a bit, huh? LOL I know what you mean as I have been involved in medical litigation myself. It is no fun. Sorry you have to go through this.

As to your question, I don't know for sure but have heard some here say that if you have 3 months NEG, then you have over a 90% chance at SVR at 6 months. At 6 mos. I believe the number rises to 98% chance of SVR. We have one person here that relapsed after 6 mos. but his next PCR within a week or so came back NEG, so the jury is out on his relapse. Hopefully it is NEG. Others here that have been around longer can tell you anecdotely about others that have relapsed after 6 mos.

[WillPower]

Thank you all for your legal concerns.  Somehow my question evolved into the litigation issue.  

Regarding legal recovery: The others and I have an attorney.  We are attempting to recover in court, which will happen.  The MD admits s/he infected us.  That is no problem.  When you are feeling like hell, you have to go to depositions, which was horrible, you also have to tolerate it all with riba anger...etc.  No fun!  On top of it you have to pay for your meds, travel on congested freeways to pick them up, the usual!!  Later, several years, you will get some money, but you have to fight the insurance company -- who does not give a damn -- to get every penny. Then it is pittance compared to the torture.

MY MAIN CONCERN, is how many people in our wonderful, humanistic, compassionate group have relapsed after 6 months negative TMA that are 1A and do not have any possibility of additional exposure?  

Thanks all for your support and concern.  I think of you all often.

[Better_Angels]

Actually my husband relapsed at 1 year post treatment. My husband is 1B. There are some interesting theories regarding whether this was a relapse, or if he always had some lingering virion in his system that finally reared it's ugly head late in the game. His first tests were sensitive down to 10, but later tests were only sensitive down to 50, which is still pretty low, so we just don't know for sure. There is about a 2% chance of relapse after 6 months post treatment. It is unlikely to relapse that late, so the odds are in your favor for SVR.

Good luck to you,
Debbe

[najeen]

I noticed your posts have been vanishing. What happened?

[KICKED]

Hi there.  I am geno type 1b. Did 48 weeks combo Pegitron, Riba. Last needle was August 2005. Last result in October 2006 was undetectable.  I feel confident that it will not come back. Good luck and keep positive.

[sfbaygirl]

Not sure what the statue of limitations are on this, but if they haven't passed, I would go after him too.