How long to wait to re-treat? Post TX PCR.

[jmjm530]

Feeling very positive finishing my 2nd week without Peg and my first without riba -- but being the pro-active soul I am, a couple of questions:

(1) Some of you like Calio, have jumped right back on the treatment bandwagon within days/weeks of relapse. Goofy, I believe has indicated he'd do the same thing in case of relapse.

Others, have indicated their doctors wanted them to rest/heal like 6-months or so before re-treating, as mine once suggested.

First, for all those who re-treated, how long did you treat and how long did you wait before re-treating, and what logic if any did your doctor give you?

And related, did any of your doctors discuss in detail the why's or why nots of re-treating sooner or later. I ask this second part because one way of looking at it is to hit it hard again before the virus has time to get strong. Another way, is to take a rest and let the immune system get strong before re-treating.

(2) So when exactly is the 4-week post-tx PCR/TMA?
When we count our treating weeks, we start with the Peg shot. So our treating week 4 PCR would be the day before our 5th shot. I'm assuming it works similar post treatment, except the difference is post tx we already start with drugs in our system. So do you start counting from the day of your last shot. Or, do you start counting from the day of your last riba?

Here's my example. Last shot Wed March 8th. Last Riba Wed March 15th. I therefore think my week 4 PCR/TMA should  be Tuesday April 4th. But counting from last riba would make it April 11th. Any input welcome.

Thanks.

-- Jim

[HCA]

I can help you here,having treated four times.
1)Hitting the virus again quickly whilst it's low did not work for me.
I had a PCR between treatments which curiously showed just 40,000 copies.
I hit again to take advantage and got a partial response only.
This time round the baseline was 1.3m, and it was the only time I became PCR neg.It was two years since last treatment.
Rules don't apply-everyone is a maverick.
The problem with research data is that it is all a smoothed out average.
As individuals we do not emerge at the apex of the data,but somewhere within the wide sweep of results.
I don't know why you are planning to retreat,as previously discussed there is a fine chance of SVR-give yourself a break!!
You've only just finished!!
2)Timing.PEG has a half life of 72 hours,so I would suggest the precise end of the treatment is 4 days after the final shot.
The last Riba is not relevant as plasma will persist long after IFN has left system.The T-Cell attack on the virus will subside as the IFN subsides.
Rgs
Laurence

[mikesimon]

You don't need to worry about re-treating Jim. But I treated within a month after relapse. My surgeon was cool with it - he didn't advise me one way or the other. I really don't think it matters much Jim because when I relapsed 3 weeks after stopping TX my VL was 6.8 million and 1 month later my VL was 3.5 million so it varries a good deal after relapse, or so it would seem. I think if you test 3 weeks after your last riba you'll probably see it if things are bad. The virus replicates so rapidly or at least it did in my case. I have to always keep in mind that as a transplant recipient things aren't the same for me as they are for others. But I know a lot of people whose relapse showed up real fast. Still Jim, I think you're gonna be okay and I'm rooting for you pretty damn hard. I wish you the very best outcome - SVR!! Mike

[can-do-man]

HCA said....I don't know why you are planning to retreat,as previously discussed there is a fine chance of SVR-give yourself a break!!
________________________________________________________________

Just can't stand the thought of no more riba can ya jim? :)

[jmjm530]

Thanks for the response. Of course I don't plan on re-treating other than in the case of relapse. LOL. But -- if research shows that re-treating sooner is better than later -- then this is the time to plot out worst scenario outcomes/solutions. I do agree with you about the research data -- and what about the 'experts' (hepatologists) themselves. Ask a dozen this very question, and I have a hunch you'd get quite a split in answers.

Regarding EOT -- are you then suggesting that the week 4 PCR should be taken 4-weeks (plus 4-days) from the final shot, irrespective of whether I continued on with the riba another week.

Lastly, how soon did you hit the virus between treatments when you had only 40,000 copies? Was it your call or did your doctor urge you on because of low viral load or some other reason?

-- Jim

[Dale_Ray]

Jim: I treated in 95'/96' when i first found out that I had hepc. This was three shots per week of interferon. I was not responding after approx 4 months so my doctor advised that I wait for the next round of medications that were due out withing the next three years. Combo of riba / interferon. I waited 10 years and started again in oct 05'. This round appears to be working but if it fails and relapse occurs my strategy would be to wait for the next drugs to hit the market. The reason I say that is I don't want to subject my system to these drugs unless they show to be successful. If they fail then the likelihood in my mind is that they will probably not work for me or the chance of success is so small I would elect to wait. Dale

[jmjm530]

CDM said:Just can't stand the thought of no more riba can ya jim? ----------------------------------------------------------------

Are you supposed to stop the riba too? They are so darn munchy.

But seriously, like many of us, I was way behind the learning curve when I started treating the first time, so it makes sense to have a "Plan B" in mind (or at least start thinking about it) in case of relapse. If the plan is to wait at least six months, then thinking about it now really isn't necessary. But if one option is to treat soon, now is the time to think about it. My doc asked for a two-week PCR although I don't see the point unless he wants to re-treat right away which apparently he doesn't.

-- Jim

[GoofyDad]

Jim, By my reasoning, the post tx calendar started for me when I stopped the riba - 6 days after last peg shot. Up until that day I was doing the same thing I had for 6 months - on treatment.

Anyone one care to speculate as to when the majority of relapses could first be detected? I'll probably test around the 3-4 week mark, but I'm trying to pin it down some. Also, I would guess that a TMA would be overkill, a Qual. PCR should be sensitive enough. Of course I'll continue testing at 3, 6, 12 mos.

I just realized I went into post tx without switching my toothbrush - oh the horor! The drug store was out of my sonicare replacement heads on a couple visits, so it seems I was using the same one through a number of months of Un-D - and into post tx. Is reinfection through personal toothbrush a real possibility?

[jmjm530]

If you have a callendar handy -- so you're suggesting (see my first post) then that my 4-week PCR/TMA would be on April 11th or the 7th?

I'll speculate that most relapses happen pretty fast -- like within two weeks. Makes sense since the 4-week test is supposedly 90% accurate. My doc wants me to have a two-week post tx- PCR/TMA which is like tomorrow (or is it next week) eeks. LOL.

Regarding the type of test, it can get confusing differentiating between qualitative/tma/PCR when tests like Heptimax, for example, are combinations.

Conceptually, what you want post-tx is the most sensitve test available. Traditionally that used to be a qualitative (you're either positive or negative) -- but now, with Heptimax, you can get similar <5 IU/ml sensitivity and also get a number should you be positive. I believe Dr. Gish has written on this in Projects in Knowledge.

Lastly, you mentioned earlier you would re-treat in event of relapse. Did you discuss with your doctor how long you would wait from relapse to re-treatment? For me, it's not so much wanting to get it over with quickly in the event of a relapse, but the question of whether or not it's better for future SVR. Calio's doctor apparently thinks so.

Hope you're starting to feel better. My own fighting/proactive self is starting to emerge again, and that's why all these questions. I think the more you learn about/plot the future, the less scary it becomes. I'm sure you understand what I mean about thinking ahead, because I remember your post a couple of months ago on mainteance for fibrosis, SVR or not

-- Jim

[HCA]

If you want to pinpoint the date at which the meds cease to cause viral suppression,I would suggest that they wind down rapidly i.e 72 hours after the last shot.
Riba will persist in the system but as a mono-therapy it has no direct effect on viral replication.As you know it is believed to corrupt the normal mutational activity .
Riba is more important in the initial weeks,and less so after 'clearance'.
All the above is just my opinion of course,it's not gospel.
I took last Riba with last shot,and did not do another week.
Mind you with hgb at 8.5 I had had enough!
When I re-treated at 40,000 it was my call,and the doctor said he could understand why I wanted to.
If you do have a worst case scenario,I would see if if there had been histological improvement before rushing back onto the combo.
Remember Vertex 950 is only 4 years away-in fact it's always 3-4 years away ,and always will be!!!!!!!!!(just kidding I hope)
I finished 48 weeks a week ago,yet still feel compelled to check out the forum and all things HVC.
If either of us had any sense we would abstain from all of it until PCR time comes around.
I haven't had a drink for four years,until last night when,with medical approval I had two small beers-strangely disappointing!

[jmjm530]

HCA: Remember Vertex 950 is only 4 years away-in fact it's always 3-4 years away...

LOL. Funniest thing I've heard in a long time. Not sure though as a stage 3 (biopsy 3 years ago) if I have 3-4 years to wait. Hopefully Vertex will start trials soon for non-responders.

HCA:I haven't had a drink for four years,until last night when,with medical approval I had two small beers-strangely disappointing!

Early in tx, I used to think about a Bud Light. However, my taste buds are so shot now, don't even want one. BTW my doc today said something about exercise and red wine to boost my HDL cholesterol after SVR. I took a double-take. But apparently he doesn't have a problem with moderate drinking after SVR.

I also asked him if he believed SVR meant the virus (replicating part anyway) was totally gone or that the immune system simply has been trained to repress the virus. He said, no, SVR means the replicating virus is gone. In other words, something like drinking -- while in excess it might hurt the liver -- theoretically can't bring back on the virus cause in his opinion it no longer exists. I found that comforting because who wants to rely on  our failing immune systems. LOL.

-- Jim

[rifleman]

You could always set up an ALT test for this Friday and see what that says.  If the virus is still around, it would be making a big effort to reassert itself and your ALT would probbaly show it.
Maybe you should just go the pound this weekend and adopt a dog. That'll get your mind off the hep.
Everyone talks about the 50/50 chance for geno 1, but I would imagine that for every 100 geno 1's that start tx. . . .
-15 cannot stand the meds and quit tx.
-20 have a tough strain of the virus and just barely get a 2-log drop at 12 weeks.
- 10 get little benefit from the meds and are taken off.
- 10 are not compliant with their meds.
- 5 supplement their tx with bonded bourbon, or, in a pinch, fortified wine.

That in itself would cover the 50% who are not cured.  Not scientific, but something to think about.
Now take the other extreme.  You were clear at 6 weeks into tx.  That is phenomenal for genotype 1.  One could say that you were a super-responder.  I do not know if you got a vl test prior to 6 weeks.  if you didn;t, how do you know you were not clear at week 4? Or week 2?  Remember that my 4 week PCR was undetectable.  I don't think that virus disappeared on the morning of the blood draw.  My feeling is that I had cleared it by the end of the first week.

Furthermore, you did 48 weeks of treatment after your UND.  Do you really think that any virions could have hidden and survived that onslaught?

Just tell yourself that failure is unacceptable.  I did that with the bar exam and with tx.  Worked like a charm both times.

As for the dogs, I'd suggest a German Shepherd.
DJL

[HCA]

In order for you to have re-infected via your toothbrush you would
a) Have to secreted blood from your gums to the brush.
b) Mixed the infected traces back into your bloodstream,only possible if you have bleeding gums.RNA is not carried by a froth of saliva and toothpaste- just blood.Blood to blood is the only means of transmission.
c)The virus cannot replicate on a toothbrush,unless it's a special one with human or chimpanzee liver cells- it can survive tho'.I think it's a few days under lab conditions.
d)As you only used the brush head post n/d I feel safe in saying the chances of you having re-infected yourself  are so remote as to be not even worth thinking about.

[rifleman]

I asked my Br. that while on tx.  He said that I couldn't reinfect myself with a toothbrush.  I did, however, switch them out after the first undetectable pcr.  Razor cartridges I changed weekly.
DJL

[jmjm530]

Go get a dog...
-----------------

Easy for you short-course guys to say. LOL. Try 54 weeks instead of 12 sometime :)
-------------------------------------
Listen, thanks again for your intelligent thoughts, a couple of things...

First, I had weekly PCR's starting at week 1, so I know what week I became non-detec. Second, I'm not sure that your optimism of 1b super-responders is documented. By that I mean, what per cent of 1b's actually have a 4-week PCR? I'd say it is very small. So in other words, the number of 'super responders' may be very understated with many who cleared at week 12, actually clearing earlier.

As I said before, I am positive regarding SVR but reality (various medical opinions) suggest 70-90% plus but with some here suggesting re-treating earlier than later -- a little contingency planning isn't a bad thing -- also takes my mind off of things in a weird way.

I do like you're positive, gung-ho attitude. If I ever find myself in big sh*t trouble in Florida, I'll know who to call. LOL.

-- Jim

[rifleman]

No, I'll pass on the 54 week thing, but thanks for asking.
I wouldn't be able to help you in Florida.  I live and work in Maine, and I only eat saltwater fish that swim off the George's Bank.  Had some Mahi-Mahi (Dorado) once.  They said it was a delicacy.  Tasted like bluefish to me.
DJL

[DoubleDose]

I think the retreating issue has more to do with how you feel after finishing tx.  If you are still feeling pretty strong, not burned out, and then show a quick relapse, in that case I think you could conceivably begin again as early as you liked.  I do not know that there is much comparative data out there regarding efficacy of quick retreatment, versus delayed retreatment.  None that I am aware of, anyway.

I think you might get more meaningful info. from a 4 week post-tx PCR, than a 2 week test.  The one month PCR would give the virus time to reassert itself, if it is still around, and it would probably show up on the ultra sensitive qual. or quant. test.  If you are undetected at one month post-tx, I think your odds are very good...probably over 90% or even higher, that you will become SVR.

Stay confident, and try to relax...I think your odds are good, judging from your early response, and having gone almost a full year being undetected.  Did you keep your inf. and riba. at the same levels throughout???   I think you are in good shape on this issue, and I am really expecting to see an ongoing set of 'undetected' PCR results over the coming months, and throughout the first year off tx.  I think you are probably feeling pretty confident as well, so don't do TOO MUCH homework on retreatment unless your PCR outcome is radically different than expected.  Enjoy your initial weeks and months off therapy...it is a wonderful feeling!!!!!

Good luck Jim, we are all pulling for you.  I enjoy your input and contributions to the forum.  You are ready to be promoted to one of the 'Senior Consulting SVR Alumni Member' roles on this forum.  Be prepared to change hats!

DoubleDose

[Algernon]

I suggest a 3 year old black standard poodle with no training.  He is very affectionate, very adorable, babe magnet.  Only eats Moist and Meaty so requires occasional toothbrushing (HCV immune, so you can use your old toothbrush).  FREE SHIPPING.

[jmjm530]

I didn't understand logic of the 2-week post-tx PCR either (he also does a 4-week, 3 month, 6 month, etc) but as always, he leaves it more or less up to me. Basically, I was going to let his whole thing lie for about 3-months, but than Kalio's doctor wanted her to start treating right away and got me thinking if there's a compelling reason to do it or not. The feeling I'm getting, however, is that there's nothing documented in this regard and simply differing opinions.  And then there's THIS...

Cuteus posted a study recently about controlled tx interruption. My doc didn't particularly like it for a number of reasons (he likes to rest folks for six months at least ) but I find it sort of fascinating if the data holds behond a cohort of 2. LOL. The thing I like is that it theoretically minimizes drug exposrure. If it works that is. :)

http://tinyurl.com/oryb5

-- Jim

[GoofyDad]

Sorry for the delay. To answer your question I had to flip forward on my calendar, and for some reason the pages were stuck.

Anyways, I'd venture it would be the 11th, but I guess it really matters what the convention is.

Wow! 90% at 4 weeks and 99% at 12? I thought it was more like 99% at 6 mos or 12 mos? Maybe I do remember something about 3 mos being similar to 6 mos when sensitive tests are used, but that seems to contradict the theory that the virus will escalate quickly, doesn't it?

It never ends......

[jmjm530]

Yes, 3-months correlates to 6-months give or take a point according to some recent stuff. The virus supposedly escalates quickly and that's why such a high correlation between 4 week and 3 month to 6-month, etc, possibly even to the 2-week -- if I'm following you. And then there some people who are clear for quite some time and then relapse although some will argue a certain per cent of those are re-infection and a small percent could even be false positives. Two hepatologists I spoke to said they have seen false positive relapsers in their practice and never re-treat without re-testing. If the second test comes out negative, a false positive is assumed since the virus is not supposed to play hide and seek. But who really knows.  Apologies if you lost some of your favorite pages flipping your callendar for me.

-- Jim

[susan400]

Since this is my 8th round of treating, I've come off of treatment and then, took a break, several times.  I always felt like I needed a break to be able to get some sanity back.  My last break before this treatment was for 5 mon and most of that I had to deal with a herniated L5-S1 disk, which needed surgery.  To be honest, whenever I finally do get off of treatment this time, I'm going to be SOO ready to be off of it.  Especially on the Riba since I've been double-dosing that.

Susan400

[GoofyDad]

Thats OK. I was done with those pages anyway....

[GoofyDad]

Your stamina is an inspiration for many. Wow - 2x riba. My 1,200 riba had me under the table. Nasty stuff, that.

[jmjm530]

(1)So when are YOU having your first PCR/TMA or is that TBD; and (2) how long do you plan on waiting to re-treat in the small event of relapse, or are you staying more in the moment? Sounds like Calio jumped right back on the tx horse but my doc wants me to wait at least six-months and from the gist of the conversation today, it would probably be with a protease inhibitor in some combo or another.

-- Jim

[GoofyDad]

IMO the PCR/TMA s/b PDQ!

I'm thinking 4 weeks, but we'll see.

I think Kalio's doc is viewing this as a continuation of her tx, because they caught it in time. That certainly sounds attractive to one who was considering extending anyway.

I'll maybe email into the doc and get his opinion on that strategy. I know he's reluctant to test too much when there is no clinical significance - and I tend to agree. We'll see.

As far as when to retreat, I guess it in part depends on the above. If that didn't pan out, I'd probably wait a few months, then fire it up again. Maybe would try a taste of the peg-intron next time.... it seems so popular...

Of course this is all academic. I honestly am not stressing it. I was stressing the decision to stop, but now I'm cool.  

Hey Tate. Yup I stopped. Hoping for the best now.

[mikesimon]

Susan, you really are an inspiration. I think of you often and not just HCV related areas. I wish you good lick Susan. Mike

[mikesimon]

I meant "luck" not "lick" - I wasn't trying to be cute that time. Mike

[jmjm530]

Goof said: I think Kalio's doc is viewing this as a continuation of her tx, because they caught it in time. That certainly sounds attractive to one who was considering extending anyway.
-----------------
So using her doc's logic, that would argue for weekly post-tx PCR's for those planning on re-treating. OK. I'll let the whole post-tx thing drop for now since we're both gonna SVR anyway.  



-- Jim

[jmjm530]

Thanks for the well wishes. I actually am very positive (although no one seems to believe me LOL) it's just my nature is to to keep fighting until the deed is totally done -- and in this case that would be SVR. The only reason thing I'm researching now is if there's a time-sensitive reason to re-treat sooner, and I'm starting to come to the conclusion there isn't. A more plausible scenario in the statitically unlikely event I relapse -- would be to watch and wait for the newer drugs. BTW I did get a little surge today of that "new found" energy which got me going on this. But now I think I'll take a nap. LOL.

-- Jim

[NYgirl]

Boy aside from all the extra Riba...is it any wonder I turned out with this disease like I did?

Jim said: just my nature is to to keep fighting until the deed is totally done

And people wonder why I'm so gung ho?   :)  One of the problems of falling under the Jim Squad - you become absolutely the craziest most determined person on the planet...and that is a good good thing.

Jim you are done - you know it stay positive and soak up all those little extra energy bursts ahhhh I can't even imagine how marvelous they must be?  :)

[jmjm530]

NY: Jim you are done
---------------------

OK. OK. I'm going to Disneyland then. LOL.

-------------

BTW I hope you're holding up with your little set back and if you think you're going to be so luck and be able to eat fudge pops for the rest of your life without losing weight, dream on. From what i underdtand many with inteferon-induced graves disease can be cured, so hopefully they'll be calling you "fatty" soon. LOL.  

Just remember, how hard you fight has to be weighed against how much is at risk. In my case, I'm around a stage 3. You have less damage if I remember correctly, so hopefully you will keep that in mind when making treatment decisions. I had absolutely no desire to treat at all until I heard I was stage 3 -- actually, they told me I was between stage 3 and 4, which was a mistake.

-- Jim

[Dale_Ray]

Jim: Quick note - my doctor told me when the treatment was over that 12 weeks post was the most accurate / optimum time to do a complete work up and see if the beast was back. I don't know if that is based on his personal experience or data. I am a 1A and that may be the factor as well. He said he had a very good feeling that we would nail it though and he is a pretty conservative fellow so that made me feel good. Dale

[GoofyDad]

Jim says:
<i>it's just my nature is to to keep fighting until the deed is totally done</i>

Shameless self promotion on a largely female msg board?
<hr>

Kalio, Sorry to keep dragging you into this... but here's a question for everyone. Why isn't it standard protocol to test at 1-2-3 weeks post tx, and restart tx immediately if virus is found. I mean, if we can restart in that timeframe without loosing preciously gained ground, why isn't everyone testing early?  
<hr>

Jim, One of those 4 links posted by cuteus last week had a breakdown of when relapse was detected. I looked back and could find it, but I remember a confusing sentence about mean relapse in 4 weeks. Did you happen to see it?

[jmjm530]

Don't remember the post but check my math here: If SVR can be 90% determined at week 4 -- and 99% determined at week 2 -- then mean must be less than 4 weeks and I figured around 2, which btw happens to be when my doc usually does his first post-tx PCR which I may just pass on since don't see the point unless I was going to re-treat right away which brings me to you other question to Kalio...

The question isn't so much whether or not you should do a 1-week, 1-week, 3-week, etc, post tx PCR but whether or not there's greater efficacy to treat right away after relaspe. Kalio's doctor seems to indicate there is. Mine thinks there's an advantage to wait a few months for the immune system to strengthen. What does your doctor say? Seems like different opnions on this.

Lastly, have you found your callendar yet? I need someone to check my math on when to do the 4-week post-tx PCR. You know callendar -- that bound thing, with boxes and such, with a different naked lady each month in an unmentionable pose :)

-- Jim

[jmjm530]

Meant "99% determined" at week 12, not week 2.

[jmjm530]

Stupid question. Have you had your PCR double-checked? A new study recently suggested there are more false positives and false negatives than one would think. I also read on Dr. Dieterich's web site, where he never makes a major treatment decision based on only one PCR. BTW thanks for the encouragment and understanding. You know the position I'm better than most -- maybe the best considering your recent scenario.  All the best luck moving forward in treatment, you certainly seem to have a very positive attitude plus lots of determination. You and NYGirl ought to bottle it up and the rest of us could inject some of it with our peg and riba.

-- Jim

[purplecat]

GREAT THREAD JIM!  I'm now at the similar time period with same questions you found yourself back in late March 2006. I did last INF shot 03Aug07 and last riba 09Aug07.  

I got my result of 4 week post PCR of UND from 07Sep07 test(4 week after riba, 5 week after INF).
Like you I can't help planning and getting myself mentally ready for the big 3 month post PCR.  DR said 95% chance of SVR if still UND 3 month post but nothing about chance if UND 1 month post..

I'm checking threads of those that have gone before me to try to better statisically guess my chances at this point. I'n not trying to make myself crazy as some might think but also am a planner and  can handle outcome better if I'm prepared.

This thread pinpoints right where I'm at today and really helped me. I thought bringing it back for further comment will also help others.

Any relapsers and SVR's have any additional input?  
  

[jmjm530]

That was s t r a n g e. LOL. Or as Yogi once said, de ja vu all over again :)

I think your doc is a bit on the conservative side which is fine. From what I've gathered, about a 90% chance of SVR if you're UND four weeks post treatment. As to the 3-month post treatment test, some say 98% but a newer study suggests it correlates 100% with SVR as long as you're not a stage 4. Still excellent odds if you're a stage 4, just not a 100% correlation.

Also, to answer my own questions -- most docs seem to wait 6-12 months before treating again, a few don't. We had a thread on this recently. Also, probably best to count four weeks from the last riba pill for the post tx 4-week PCR, but I ended up testing at week 2 and week 6. Then week 24 (official SVR) and at one year post.

Good luck to your SVR!

-- Jim

[zazza]

Looking good, purplecat. I do wish you SVR, partly because of selfish reasons, since I also had that "29" at week 12.