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Avatar universal

What to do when ending treatment

I am finishing treatment the end of this month.  I have been trying to figure out how to manage blood tests, doctor visits and TMA tests.  I have not had a blood test in 5 weeks and was thinking - I have an open script for CBCs every 6 weeks - about getting one next week (at week 46).  Would I need another blood test when I am done - only 2 weeks past this?  Do people get tested immediately upon finishing tx or do they wait for drugs to leave system?  How long should you wait?  Can you get regular blood drawn when the 6 week TMA is done?

I dont have a doctor visit until two weeks after I finish. When is the best time to see your doc - seems that seeing her right at the end is kind of waste of time.  Should I get another test before I see her?  How about the schedule for viral counts - 6 weeks, 12 weeks, 24 weeks one year.  Seems like a lot of tests - do people get tested this often?  As I write this, it seems like stupid questions but I am pretty fried actually and am having a hard time stumbling towards the end of this thing.  Any ideas would be greatly appreciated.  Thanks.
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Avatar universal
I really think you've got much more imortant things to attend to,  jumping up and down on the sofa for example, but if you insist here it is <a href="http://hepcassoc.org/messbrd/index.php?s=f9372a48018eeeab79ce712ec4cfa861&showtopic=11631">again</a>. It contains all the text and data but no formatting. If you can get me an address, I'll mail the pdf.
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Avatar universal
Could yo clarify what you mean by "elevated B12" and that it implies there is more damage than meets the eye?  What was your actual blood B level?

All this info is great and I want to thank all you analytical thinkers for letting us listen in on your conversation.

miss
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Avatar universal
sunspot: congratulations!

jim: re "My week 2 PCR was non-detectible", I hadn't heard; this makes the whole discussion (even more) entirely academic, your relapse odds must be approaching  those of winning the lottery...

If money's no object there's no reason to not have as many sensitive tests as one wants. However last time I checked the <5 tests were running at about $350. Once you start tx, all you can do is stop or extend. As  a 1, side effects aside, you would only stop if you didn't meet one of the two well-established cutoffs (2-log by 12, undetect by 24). The only documented basis for extending past 48 is detectable VL at 12 (Berg) or at 4 (TeraVic). All four guidelines are based on data from low sensitivity tests. That's why I believe the only time a high-sensitivity test can actually  contribute to a  tx decision is if you come up between 1 and 50 at 12.
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132578 tn?1189755837
I'm doing fairly well for week 7. Maybe this Procrit is starting to kick in. I've only had 2 shots of it so far and it could be my imagination , but thats ok too. You have 24 weeks left.. thats got to be a great feeling. It's also got to be a great feeling to have made the decision to never do this again. I've gone for the longest time with the conclusion to my tx "open" . That really sucks to have no end in site . It's easy to state how many weeks of tx we have left , but we all know in our minds that its a good possibility it wont be over at week 48.Unless we want it to be. I do.
Have a great day.
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92903 tn?1309904711
I had my EOT TMA done about two weeks prior to last INF shot. That gave me time to get the result and continue TX uninterupted if called for - including and emergency second opinion - though we would probably have halted tx anyway.

On about 4/10 I posted several studies that confirmed a significant number of PCR negative txers will show positive if tested by TMA. The posted studies compared <50 PCR to <5-10 TMA. Apparently there are more sensitive PCRs than used in the studies -- going down to 2-5 IU. It's not clear to me whether it's simply a matter of test sensitivity or whether TMA is an inherently superior amplification technology. If it's a sensitivity issue, it would follow that the 2-5 IU PCR would be the best choice over all.

To me, the most important time to use the most sensitive test would be at the point that negative is first established -- but using it all the way through post TX would obviously be best. I think TMA costs about 4-5 times what <50 PCR does.
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85135 tn?1227289772
I have had 5 PCRs so far. My first 2 were at 12 and 24 wks tx. Sensitivity was <615 and I was UND. The next 2 were at 36 and 48 wks with a test called Super Quant from the west coast Mayo Clinic and tested to <10 UND. My 12 wk post-tx test was also UND <10.
Should I make a fuss to my Dr for a TMA at this point in my post-tx? He is difficult to work with and claims he never heard of Heptimax  I go for my 24 wk post-tx PCR in a little more then 3 wks.







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Avatar universal
Willing says: throwing away data because you don't like what it's telling you is never a good idea.
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Agreed and also the inverse :) My late night math coincides with yours but the other study (sounds like "zeuzem" but isn't) had even better odds --98% if I remember correctly on the week 4. I threw away Zeuzem, not just because the name is confusing to pronounce, but because of no riba, and also the fact they were using a less sensitive test. And, yes, I was a bit pissed at Zeuzem for that confusing abstract which suggested a first glance that there was a high rate of relapses at week 56, if I remember correctly.

I do believe I've heard riba dosage is associated with relapse rates but can't put my finger on it. I believe the reasoning goes that peg gets the virus down and riba keeps it down through a mutation process.

I do disagree somewhat with the statment that "he only time the extra sensitivity tells you something useful is at 12 weeks" and hopefully I'm not taking it out of context.

If I had it to do all over again I would have started with a sensitive TMA at week 1 and thereafter. My week 2 PCR was non-detectible, however the sensitivity was only 600 IU/ml. It would have been useful to know if I was indeed non-detectible at that point for a number of reasons.

Then, as Goofy says, assuming you're currently using a less sensitive test -- as soon you "clear" the virus down to the test's limit, it's really imperative you test via TMA to see if you have a real negative or a false negative in the sense that the virus is still detectible with a more sensitive test. The study Goofy posted regarding a significant number of EOT PCR negs being TMA positives brings this home to me.

How many people are currently treating who think they are non-detectible because of a less sensitive PCR, but really still have the virus if they test by TMA According to Goofy just about  ALL these folks will relapse because they never reached non-detectible. From a clinical point of view, if they knew their TMA detectible status earlier, the treating doctor could have become more agressive with the drugs or even changed the Peg to help faccilitate response.

Post treatment, it gets a little blurred because what is done is done and eventually you'll find out. But if your're in a test early mode like me -- and don't want surprises down the road -- why not use the most sensitive test available. That way, you'll catch the relapse at the earliest possible point. Especially important if you plan to re-treat asap on relapse and in my case just for more peace of mind.

-- Jim
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Avatar universal
Ina: you're right of course, though I seem to recall there may now be another lab with FDA approval. Also, I think some of the lab techniques described in the Pham review TN posted above may be on their way to commercial labs. Can I ask why you'd want to jump right back on the Ingergen ?
Goofy: as far as I know, there's no clinical significance to the nuts and bolts of the amplification chemistry used in PCR, vs bDNA, vs TMA. It comes down to their sensitivity/reliability statistics. TMA just happens to be the most common high-sensitivity technique in commercial labs at the present. The larger issue is that a serum-based VL test is always a rough indication of actual cell infection - otherwise undetectable would be the same as SVR. As you point out, it mostly comes down to $. If cost is a factor, the only  time the extra sensitivity tells you something useful is at 12 weeks.
Jim: throwing away data because you don't like what it's telling you is never a good idea... But as I read it, Zeuzem and your Dr. are telling you close to the same thing. If you take their numbers, at EOT you're looking at  26% relapse odds averaged across all patients in the peg tx branch. However, by week 6 roughly 75% of the relapses have clicked in and you're left with with only 6.5% relapse odds. The absence of riba clearly affects Zeuzem's overall SVR rate, but I've never see data that associated it with lower relapse or slower/faster relapse.
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Avatar universal
what does your dr want you to do? it might match what you have decided to follow, but it is probably best to make sure you are both in agreement. I would ask him what the protocol is in his practice, and if I don't like it, suggest my preference.
Mine told me, PCR and CBC 4 wks post tx, same at 3mo post and 6 month. We had a 48 wk PCR but nothing until 4 wk post tx, even I did not finish tx at 48. My feeling was that as long as I was on meds, the bug would not show its face, anyway.
Helpful - 0
116701 tn?1210259164
One of the ladies that works with my sister in law finished treatment three weeks ago and she says the lady is like her old self now and energy is great and her mind is clear and sound. A little good news! Dale
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92903 tn?1309904711
I for one  certainly see no reason too. Under 10 is as sensitive as TMA, and I think most would agree that high sensitivity at your point in the game probably not an issue anyways.    

Enjoy the SVR big guy!
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116701 tn?1210259164
Give me five brother - up high! How are you doing? Things leveling out at all for you? Dale
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132578 tn?1189755837
Well said and quite inspiring. At 49 , I dont have that many years left that I want to devote to pain and suffering.
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116701 tn?1210259164
I would never go through the Pegasys/Riba again so it makes no difference to me about the testing. I will do my time (24 weeks left) and that is that. If I stay clear I do if not I will probably be tested in 3 or 4 years post treatment and if it pops back up then new drugs will probably be available. Not going to spend my life worrying about doctor appointments and blood work. I'm going fishing with my grandson, car shows with my wife, vacations in hot places, cut my mom and dads grass, never miss one of the grand daughters ball games and never go to bed until 11:00. That's my short list:) Dale
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Avatar universal
Susan,

TMA (transcription mediated amplification) is a more sensitive technology for detecting Hep C virus in the blood. Two tests that use TMA technology are Quest Diagnostic's Heptimax and Quest's
HCV RNA Qualitative TMA.

The former is a quantitative TMA giving results in numbers, the latter is Qualitative, simply stating you are either detectable or non-detectable. Heptimax has a sensitivity of 5 IU/ml and the Qualitative a sensitivity of around 9 IU/ml. These tests are often suggested over less sensitive tests, especially at EOT and post treatment and also during treatment if a less sensitive PCR test is being used and the patient shows negative. A recent study showed that many PCR negatives may really be TMA positives. In other words, the less sensitive tests simply don't pick up the virus all the time.

Mitch,

LOL. And that's the only one we should make. Head's=SVR.

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Avatar universal
How much for a two-headed dime anyway?
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Avatar universal
What is TMA? I know about PCR, viral loads, etc., but don't know what TMA is.

Susan
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Avatar universal
Ah, just picked up the no riba thing you mentioned in Zeuzem. I think that then suggests dumping Zeuzem for Guzman. Guzman is much closer to my doc's estimate with a 98% specificity between the 1 and 3 month blood draws. Still a little to early for any cork popping.
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Avatar universal
Those figures seem to make sense but that abstract was really badly worded. I only took a glance since I'm ready for bed but will sift through tomorrow. One thing that did stick out though is that they used a detection limit of only 50 IU/ml, which is the custom with European studies. This could account for some of the later relapsers as they may have been under the radar earlier. Thanks for taking the time to post the full-text.

-- Jim
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Avatar universal
the Zeuzem article is <a href="http://hepcassoc.org/messbrd/index.php?showtopic=11636">here</a>, though of course the formatting's gone. As I read it, the two articles are in pretty good agreement. Both report similar relapse rates, 22% and 26%,  and report most relapses in the first 4 weeks. Zeuzem is much larger, but is older and didn't include riba. From Zeuzem's Table 2, of the 147 relapsers in the 180 mic PEG branch, 62% had relapsed by week 4, 89% by week 8, and 98% by week 12. Maybe a tad below what your Dr said, but not enough to delay chillling that champagne ...
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Avatar universal
After looking over things again, the Zeuzem study doesn't necessarily contradict those that suggest a non-detectible 4 week post treatment TMA correlates 90% with SVR -- something that the Guzman study seems to support. (Actually Guzman seems to suggest that the week 4 post-tx PCR correlates more than 90% with SVR as they state a 98% specificity).

The confusion -- at least with me -- is what I consider misleading wording in the abstract which is one reason I get so frustrated with abstracts.

Zeuzem reads in part:

"For all treatments, relapse was most frequent at weeks 52 and 56 and became rare following week 60."

That suggested to me that there are a lot of relapses at week 56 (8 week post treatment). But a more careful reading reveals that they only tested at weeks 52, 56 and 60. And since relapses between weeks 56 and 60 are rare (3-6 months post tx) then the ONLY possible weeks for relapse are weeks 52 and 56. And I imagine their full data would reveal that the week 52 relapses far outweigh the week 56 relapses.
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Avatar universal
Depending on the test and lab, you may have to wait up to two weeks for results of the TMA. Therefore, if you want the results before you stop treating, you could take it at week 47 and then extend treatment to week 49 or until a negative TMA result was in hand -- or, you could take the TMA at week 46 which should give you enough time to know before week 48. All the best luck!
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Avatar universal
amen on the end of tx tma test. i told my dr. i would pay for it myself to know. i would like to get one maybe a week BEFORE end of tx so if it shows a vl count i might consider extending tx. the more tests the better i thik on making informed decisions.
you have been a wealth of info. thanks
bobby
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Avatar universal
Return says:Order a new script for Riba in case bird flu hits.
-----------------------

I knew that xtra riba might come in handy!
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