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As you suggest, your viral response will play a big role in determining treatment length.
For that reason, very important that you test viral load minimially at weeks 4, 12, 24, 36 and 48 -- but ideally you would test viral load weekly until UND, and then monthly throughout treatment. And do not assume that just because your doctor is drawing blood and doing "labs" that you are getting a viral load test. You must ASK specifically to be sure, and I suggest you ask in advance of treatment when you will be getting them.
You will also want to use the most sensitive test available. One good test is "Heptimax" by Quest Diagnositics. LabCorp also has a couple of good tests, but which one to choose might depend on how high your starting viral load is.
Best day to test for viral load is the day before your injection, or on the day of your injection, but before the injection. So, for example, you would draw blood for your week 4 viral load test the day before your fifth injection.
Without going into too many details now, 72 weeks is sometimes recommended if you have a two-log drop by week 12 (EVR) but still have some virus, and you are then UND by week 24.
All the best,
-- Jim
If you don't have a minimum 2 log drop by then, your Dr. may change or increase your meds and have you continue to week 24. At that point, if you are not yet UND, TX will probably stop.
I agree with Jim that it's important to try and have a 4 week and an 8 week PCR so your VL decrease can be accurately charted. I am a slow responder, on the 72 week ONLY because I didn't get a 2 log drop by week 12. It is not something you WANT to do unless there are no options and you won't know that until you start TX and see how your body responds to the meds. Everyone is different and hopefully you'll be one of the lucky ones.
I wouldn't worry too much, yet, as you might very well have a rapid and early VL decrease in which case the extension issue won't be relevant.
What's your starting VL and other stats?
wyntre
Many doctors may not go with this, so a reasonable plan then is to test viral load at let's say weeks 4, 8, 12, 24, 36 and 48. But some of this again depends on your viral response.
As to what you should "hope" for -- you really want to be UND (undetectible) as soon as possible, not just a two-log drop. A two-log drop by week 12 is the MINIMUM you want. For example, being UND at week 4 is a lot better.
BTW don't sweat it if a lot of us remains unclear for some time. It certainly did with me.
-- Jim
I've now started my second round of treatment (72 weeks this time). I truly wish I had gone 72 weeks the first time. Had I done the 72 weeks originally and relapsed I would not be putting myself through this again. Instead I'm now spending 120 weeks of my life since May 2006 on treatment. I would have rather given myself the best chance the first time. I wound up with Rheumatoid Arthritis from round 1. In most cases treatment is contraindicated in people with RA but due to the extend of my liver damage I was able to get back on treatment. So here I am doing a second round while dealing with RA. Because of the RA I am not a candidate for infergen.
Oh well, just my opinion. If you can tolerate the sides, I'd say do the 72 weeks.
Mouse
"had a VERY low starting viral of 90,000 when I attempted my first round of treatment. I'm a 47 year old, i was undie at week 12."
How did your HGB hold up during tx? Just curious...Pro
PS: Wishing you the best of luck in your second go-around!!
*LOL*
Thanks Zazza! I know YOU aren't afflicted with brain fog! (G)
Ginger, I stand corrected; I MEANT I'm on 72 weeks coz i didn't get UND by week 12! (didn't reach that until week 17)
Mouse, I don't understand why you think you should have gone on the extended TX when you WERE UND at week 12.
I sure am sorry youre TX'ing again but in your case, it seems like you had a decent chance at SVR with the 48 week TX. Did your Dr. originally suggest extending, and if so, what was his rationale?
Please help me understand. I'm concerned and I know how much it stinks doing this TX again.
wyntre
Why would this be Jim? I had an UND PCR at 4 weeks, and was told that my next PCR would be 6 months post treatment (after 48 weeks). The reason being, that once you are UND, it is highly unlikely the virus will return prior to the finish of treatment. Being in Canada - I was told PCR puts quite a strain on medical laboratories, so it is preferred to only test when neccesary.
-- Jim
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I think the importance of sensitive TMA testing has already been established early-on in treatment, as well as for End of Treatment and post treatment. This article -- brought to my attention by "Willing" in another post -- suggests how important it is to continue sensitive TMA testing throughout treatment.
Basically what the study says is that detection of low level virus (below the limit of a PCR) can predict treatment failure. And conversely, UND by TMA can help predict SVR.
This was no doubt part of the reason that my doc wanted sensitive TMA's monthly during treatment (I tested via TMA weekly before UND) and why a consulting doc -- when helping me to decide treatment length -- made it a point to mention that I was UND by TMA throughout treatment -- with the suggestion that in all likelihood the virus was gone for good.
Two good tests using TMA technology are "Heptimax" by Quest Diagnostic's Lab and "HCV RNA TMA QUAL" also by Quest. The latter should only be taken after you're UND by "Heptimax" since it will not produce a number, just either confirm UND status or not. LabCorp also has a very sensitive test using I believe PCR technology that would do the same thing.
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"BACKGROUND: In chronic hepatitis C patients with an initial virological response (IVR) during antiviral therapy (that is, HCV RNA becomes negative before week 16 of treatment) the significance of reappearing viraemia below the detection limit of PCR is not known. We studied this phenomenon in subsets of patients. METHODS: We assessed HCV RNA at weeks 16 and 20 of therapy by PCR and by more sensitive transcription-mediated amplification (TMA) in 23 patients with breakthrough or relapse and in 34 patients with sustained virological response (SVR). All patients participated in a high-dose-interferon induction study for difficult-to-treat patients. Therapy consisted of amantadine hydrochloride and ribavirin, combined with interferon-alpha2b induction during the first 6 weeks and thereafter combined with weekly pegylated interferon-alpha2b. RESULTS: Among the 57 IVR patients, we detected transient or persistent reappearance of low levels of HCV RNA in 10 of the 23 (43%) patients with eventual breakthrough or relapse; but in none of the 34 SVR patients. In 5 of 10 patients reappearing HCV RNA was only detectable by TMA. CONCLUSION: Reappearance of low levels of HCV RNA in patients with IVR predicts treatment failure"
http://lib.bioinfo.pl/pmid:17591033
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I think it's simply more information that can used for any of the above, or other scenarios such as when someone is having a very difficult time with side effects and trying to decide whether continuing on is worth it.
As a personal example, toward the latter part of my treatment, I was struggling with whether to extend past 48 weeks or not. My treatment doctor made a case to extend based on histology (stage 3) and age (58). Two other consults made a case not to extend based on my sort of RVR (UND at week 6) AND one made a point to emphasize that I was UND *throughout* treatment via sensitive TMA. Based on this input I decided to only extend six weeks as opposed to a more agressive extension and ended up treating 54 weeks.
Based on studies like this, I just can't think of any reason not to have this information unless not feasible, such as the tests being unavailable or not covered by insurance, etc. That certainly does not mean that anyone not being tested as frequently isn't receiving/received good care. As you may be aware, the week 4 test wasn't given all that often as recently as a couple of years ago, and now it's starting to become a standard.
-- Jim
-- Jim
-- Jim
But just show you should know...as of a couple of years ago right here, the same arguments you've given were used as to why a week 4 test wasn't necessary. I know, because I was on the "importance of a week 4 test" side of that debate.
It's clear to me that the trendline in treatment is for more frequent and more sensitive viral load tests, allowing better prediction of SVR along with an opportunity for more intervention/tweaking of meds along the way.
I feel lucky in that my treatment doctor was ahead of the curve. I started treatment 2.5 years ago and had weekly TMA's from week 1 until I was UND at week 6. From that point on, my doctor wanted me to be tested monthly for viral loads. Never had any problems with my insurance company.
-- Jim
-- Jim
As far as my HGB ... I had a VERY high HGB when I started tx, it was 16.4 when I finished tx it was right at 10.
My starting HGB this time around is around 14. The difference being is that I no longer smoke. Smokers have a tendency to run higher HGB's. It will be interesting to see how my HGB holds up this time. Certainly hope I don't have another 6 point drop or I might be in a bit of doo doo LOL.
Mouse
Mouse I do understand what you are saying, I have the same type mentality as you. ( if I had to do 54 weeks, why not do the 72). But it does appear your first tx was going along nicely per plan..unfortunately relapse was the luck of the draw, but hard (for this worker bee) to find fault with your 1st tx attempt..I wish you the very best of luck, while 72 weeks of tx is tough----my hat really comes off to retreaters as yourself.....brass bollucks, as Ramsey would say on his BBC show......;^)
Pro
COMPLETE AND TOTALLY DISAGREE HERE WITH THIS STATEMENT.
I still had an active viral load at week 12 and extended to 72 weeks. Was negative at week 24. Am now SVR post treatment 10 months. Without extending I doubt fully that i would be.
the first time we do treatment is the BEST chance at killing this disease. Why do the 48 and then retreat. If you can handle it go for the gold the first time and do NOT BE TRICKED by all this newfangled easy quick stop early treatment BS. You are fighting to kill a disease that has a chance at killing you. If you can tolerate it and you are still positive at week 12 I think it's FOOLISH to quit earlier than that.
If you are going to do it - do it once, hard and get it over with for good.
People who are afraid of trying to beat the tar out of this disease should NOT discourage others from giving it the best fight of their life. Don't listen to them. Just because they didn't doesn't mean its not PRUDENT TO DO SO YOURSELF.
PS There is no such thing as extending for a few extra weeks proven to show ANY improvement. it's either 48 or 72 according to ANY and ALL studies done and according to the best doctors in the world.
some people don't always manage to tell the truth on here and try to disuade people from doing what is right.
End of the story and I"m sick to DEATH of the BS that this person is constantly promoting. It's BS plain and simple.
Wait and see how you are doing. Don't contemplate quitting or extending until you know. This is not MY ideal this is what all the STUDIES predict as the BEST chance of success.
OPinions do not really count only FACTS do.
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I think you misunderstood my above statement. When I said "regardless" I was referring to the poster's question.
Are you saying that a genotype 1 with little or no liver damage, who is RVR (UND at week 4), remains UND throughout treatment, and has no other negative predictive factors such as fatty liver, HIV co-infected, Afro American, etc -- are you saying that this hypothetical patient should treat 72 weeks?
I don't think you're saying that and that's all I'm saying. But maybe I'm wrong and you feel that EVERY genotype 1 should treat for 72 weeks, regardless.
-- Jim
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Is this directed at me? Maybe it you took the time to actually read a person's posts ( I never suggested anyone detectible at week 12 should not extend treatment to 72 weeks) you would have less temper tantrums.
No more no less no other answer is proven by fact.
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Yes, that is correct. And I have never said differently in any thread including this one. Again, you obviously did not read my entire post and made a knee-jerk reaction based on a mis-reading of my first sentence.
WHY make everything so complicated on such a damn SIMPLE QUESTION? If her doctor is considering 72 off the bat then obviously he finds SOME merit in it or he certainly would NOT be even suggesting such a thing. Confusing people with words like "cirhhosis" - why?
Detectible at week 12 but UND by 24 do 72 for the best chance at achieving SVR. Pretty easy to JUST say that and leave all the mumbo jumbo extras out of it when someone new asks a pretty straight forward question.
I'm not making things complicated, just answering a question in an accurate fashion. Something you rarely do, as in this case, where instead of answering the question, you go off into one of your rants.
BTW thanks for all the instructive words about how I should answer a question, it's difficult to emulate your clarity and reason here, but I will try and do my best in the future.
So I apologize for that much.
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While not rocket science, unfortunately the answers often aren't that simple, and trying to over simplify things is what really can be misleading. I think we've both seen that time and time again here, where someone picks out "this" or "that" from someone's post and runs with it -- often in the wrong direction.
But I will accept your qualified apology and write it off to a bad hair day.
-- Jim
I also don't understand your response. The appropriate response to Ginger's question was not the definitive and overly simplistic declaration you made right out of the starting gate: "No, it would not be in your best interest to go 72 weeks, regardless, unless you were stage 4 cirrhosis and I'm not 100%f sure there either." How do you know if it's not in her best interest jim? She said she's advanced in years and is uncertain she will be able to tolerate multiple treatments, she hasn't mentioned how much fibrosis she has, she has the toughest to treat geno 1 and has described her VL as being high. Why would 72 weeks be off the table under nearly all circumstances, especially up to and possibly even including cirrhosis?? Without knowing more about her whole situation, that doesn't make any sense. And again the part about nearly all circumstances up to an and even including cirrhosis is totally over the top, and we've certainly been down this road before. You should explain to ginger your own age, fibrosis level, extended tx with uber dosed riba regimen jim and how it worked out for you before blanketedly telling others to not do something similar to get their own SVR.
jimquote: "Are you saying that a genotype 1 with little or no liver damage, who is RVR (UND at week 4), remains UND throughout treatment, and has no other negative predictive factors such as fatty liver, HIV co-infected, Afro American, etc -- are you saying that this hypothetical patient should treat 72 weeks?"
Nygirl didn't say anything about RVR, persistent UND throughout treatment, negative predictive factors like HIV coinfection, being african american, high BMI etc. And neither did you in your initial response to ginger. And the only risk factors ginger herself mentioned were negative ones where extended tx may be appropriate: i.e. geno 1, advanced age and high VL. So why are you attempting to characterize nygirl's response (and ginger's health criteria as being optimum) as if she did say such an obviously wrong thing? She didn't, she's only giving her opinion that is based on her experience (which is extensive, as we all know), and based on what (little) information ginger has provided about herself. And it IS an absolutely irrefutable fact that extended tx DOES increase odds of SVR for nearly everyone (that achieves sustained UNDetectability), regardless of risk criteria mentioned above. That's a fact and let's not let that fact get lost in the wash.
I think what nygirl said was perfectly appropriate, and I think the advice cited above that you provided to ginger was off base for the reasons stated.
As "HR" has said in the past, it's impossible to cover all bases/all scenarios in anwering a particular question, and the best you can do is try and deal with the core issue as you see it.
No problem if you want to expand, qualify or disagree with my answer. My quip with NYGirl was that she was not paraphrasing me accurately when she suggested that I was against 72 weeks of treatment , which I actually did touch upon in my last sentence.
-- Jim
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I've discussed this before, but once again...
I treated at age 58 and at the time I started treating I was told I was between stage 3 and 4. I believe the original plan (with doctor 1) was to treat 48 weeks unless I was a slow responder, and then to treat 72 weeks.
At week 2, I switched doctors because I wanted to take a more agressive approach given my projected odds (before I had a vl test) of around 40% based on my age, and level of Fibrosis.
The "Uber" dose of ribavirin was my idea, and as I have stated in the past, I probably didn't need it because my week 1 vl was almost a two-log drop, and that was the week I was on a single dose of Peg and regular dose of ribavirin. Of course, I didn't get the vl test results back for a couple of weeks, so did not have that info in hand when I stepped up the meds.
I became UND at week 6 via sensitive TMA and remained UND via sensitive TMA througout treatment.
Near the EOT I consulted with perhaps 5-6 hepatologists (three I personally saw) regarding how long I should treat. All except my treatment doctor felt 48 weeks was the right number based on my RVR and the fact that I did not have cirrhosis. (It was determined mid treatment after my slides were re-read, that I was not between stage 3 and 4, but in reality probably closer to stage 2-3). I ended up compromising and treating 54 weeks, but looking back, especially with some of the more recent RVR studies -- not to mention 5 out of 6 hepatologists suggesting 48 weeks -- so looking back, I think 48 weeks was the correct number.
I don't think any of the above is inconsistent with my answer to Ginger.
-- Jim
"Or would it be best to go for 72 wks regardless if I am able to?"
It was quite clear -- at least to me -- that she was asking if she should do 72 weeks *regardless* of any other factors such as viral response. The correct answer as I saw it then (and now) is "no", she shouldn't do the 72 weeks regardless. It depends on other factors which I touched upon best as I could. If you have "other factors" to add, that's fine.
Please have the last word.
-- Jim
As Roseanna Roseanna Danna used to say: Never mind!!
My writing style often follows a time-worn pattern of starting with a topic sentence and then expanding on that sentence in the paragraph(s) below. OK, you've already apologized for that, so I'll move on.
What I'd like to call your attention to is your first post in this thread, where you say in part "Personally if I were planning on starting treatment any time soon, I would employ all three of the strategies described above. If the strategies worked at getting me to an UND status within 2 weeks, then I would NOT go 72 weeks - no way. In fact, I'd consider not even going 48 weeks, but that would depend on a lot of things."
Now, given your own critique of my post, where are all your qualifications as to "age",
"toleration of future treatments, "level of fibrosis". No, you basically did what I did and answered in a general way picking out the points you felt were important to emphasize, unless you want to hang onto "depends on a lot of things" , but I don't think you'll take that tack. I don't have problem with what you said, just wanted to point out we handled it pretty much the same way.
As an aside, I also find it amusing that NYGirl says to me "why make everything so complicated" and you said "The appropriate response to Ginger's question was not the definitive and overly simplistic declaration".
Hard to please everyone, you know. I just try and do my best like I think everyone else does here.
In any event, I think we're OK with this -- at least I am -- until next time, which hopefully will be well into the next year. And NYGirl, if you're still around, the same sentiments to you. Noel, Noel. Peace on Earth (and Med Help).
-- Jim
I don't want to argue anymore so The end from me gain (not a last word type thing just an iteration of apology).
Laughing ALMOST out loud. :)
That was priceless.
wyn
Huh? Where are all my qualifications as to age, fibrosis etc? My qualifications were described right there in my post where they belong jim (and where you quoted me). That's why I *qualified* my condition for sub-72 wk treatment based on the conditions that (1) utilized the three tx strategies described above (i.e. alinia, riba predosing, IFN doubledosing), (2) achieving "UND status within 2 weeks" and (3) "would depend on a lot of (other) things." These are obvious and well "qualified qualifiers" jim, so it sounds like it's you that's doing the post misreading this time. And no I'm not required to give an entire dissertation in my limited scope post beyond what I said (i.e. "would depend on a lot of things"). The qualification I provided is good enough until ginger asks for more clarification (and even afterwards, for that matter). And remember, I wasn't giving a definitive declaration as you appeared to be giving above with the "regardless" statement (and yeah I know, you weren't really doing that), I was simply describing what *I* would do and how *I* would interpret the situation (re-read what I said if you question this). That's why I prefaced my take on tx duration with "Personally if I were planning on starting treatment..." etc.
quote: "No, you basically did what I did and answered in a general way picking out the points you felt were important to emphasize, unless you want to hang onto "depends on a lot of things" but I don't think you'll take that tack. I don't have problem with what you said, just wanted to point out we handled it pretty much the same way."
Jim, I don't think we handled it in the same way. Again, I misread your "regardless" statement and then jumped on you inappropriately. But your assertion above that it's me that's actually guilty of not properly qualifying my statement obviously isn't true for the reasons cited. So let's give it a rest, shall we?