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Avatar universal

TX for 48 wks or 72 wks ?

I am starting tx soon.  My doctor mentioned a 48 wk tx plan, and then mentioned 72 wks.  My genotype is 1 and my viral load is considered high.  This is my first time treating and may be my only time as  I am at an age where I do not know if I will be able to deal with tx another time.  Does anyone know how much better your chances are of clearing the virus with a 72 week tx plan as opposed to 48 wks?  And  would your 4 wk, 8 wk, 12 wk and/or  24 wk viral load reductions play a role in whether to extend the tx to 72 wks.  Or  would it be best to go for 72 wks regardless  if I am able to?   Do you know if the insurance companies typically pay for the extra 24 wks of medication?  I appreciate any information you can offer.  I am just trying to plan ahead - there is so much to think about.  Thank you.  Ginger B.
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Avatar universal
jimquote: "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"."

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?
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173975 tn?1216257775
"I advise everyone to do at least 72 weeks and that includes even those without  HCV. It's a wonderful experience and it just gets better and better the longer you treat. There is no good reason why the joy of treatment should be restricted to those with hepatitis. Let's share the joy with everyone and especially during the Holiday season. Mike"

Laughing ALMOST out loud.  :)

That was priceless.

wyn
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Avatar universal
Thanks all - believe it or  not - I want to let you all know that I did learn a lot from your posts.  If you don't mind, I would like to keep you informed of my progress and my viral loads.  Stay well all....Ginger B.
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Avatar universal
Actually it wasn't a great hair day but I'm feeling good today. I hope you are too. Santa Mike
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179856 tn?1333547362
I ditto MrEMeet - maybe I should have had a cup of coffee before reading or I should stop drinking my Interferon leftovers to get that "taste" but........as someone who did the 72 I take it VERY personally because it DID work - and seriously I just want EVERYONE to have the BEST chance that they can at killing off this disease for good.  I apologize as well but the way I read it well it got my blood boiling into over drive, I hate this disease  with all of my heart and it takes over sometimes.

I don't want to argue anymore so The end from me gain (not a last word type thing just an iteration of apology).
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Avatar universal
Apology accepted but I'm not going to let you off the hook that easily and will therefore have one more word, although you can still have the "last" (notice the quote marks please) as I previously offered:)

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
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Avatar universal
Re-reading what both ginger and you said above, I agree what you said was technically not wrong or misleading. Sorry about jumping on you, it was just my first read of what you said appeared to be an almost airtight statement against 72 weeks of tx. You didn't "quote" ginger above (as I would have) when you said "regardless", and the way you worded it led me to mistakenly think that was your wording. I suspect nygirl (and perhaps others) read it the same way. Plus knowing how you feel about existing treatment and extended treatment, I was self-prejudiced into thinking you were going down that familiar road again. But I was mistaken and I apologize about that. I agree that she should not treat "regardless", come hell or high water no matter what happens for 72 weeks. Obviously there's more to it than that, and you're correct for pointing that out.

As Roseanna Roseanna Danna used to say: Never mind!!
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179856 tn?1333547362
The end.
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Avatar universal
Just to summarize, and then I'm done here -- because as you've stated this has been thrashed over between us in the past -- the question "Ginger" asked was:

"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

  
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Avatar universal
Forgot to add that "age" was not mentioned as a factor by any of the doctors except my treatment doctor. When I did bring the subject up to one specialist, he said that my RVR trumped my age. Since then I have seen studies that support this, as well as studies that suggest that the level of fibrosis also isn't an important predictor of SVR unless it's stage 4.
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Avatar universal
Mre: . 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.
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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
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Avatar universal
Briefly, when I used the word "regardless" it was in the context of the way Ginger used the word "regardless" in her original post. Her doctor mentioned two options to her -- 48 weeks and 72 weeks, and yes, I assumed he mentioned those options because viral response was not known at that point. Something (viral response) Ginger mentioned later on. All I was saying is that you don't treat 72-weeks, "regardless", meaning sometimes you do -- I covered that as best I could -- and sometimes you don't.

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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Avatar universal
LOL. Now here's someone who obviously is having a "good" hair day.
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Avatar universal
jimquote: "I think you misunderstood my above statement. When I said "regardless" I was referring to the poster's question."

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.
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Avatar universal
I advise everyone to do at least 72 weeks and that includes even those without  HCV. It's a wonderful experience and it just gets better and better the longer you treat. There is no good reason why the joy of treatment should be restricted to those with hepatitis. Let's share the joy with everyone and especially during the Holiday season. Mike
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Avatar universal
NY: LOL Jim you make everything so much more complicated than it need be that I did only read the very first misleading sentence...
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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
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179856 tn?1333547362
LOL Jim you make everything so much more complicated than it need be that I did only read the very first misleading sentence and assume you were on another "shorter the treatment the better" rant and I did react to it.

So I apologize for that much.
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Avatar universal
First sentence should have read in part, "...if her viral *response* merited that.
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Avatar universal
Her doctor mentioned TWO plans. A 48 week plan and a 72 week plan. The question was should she do 72 weeks "regardless". And my answer was "no" -- that she only do 72 weeks if her viral load merited that.

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.
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179856 tn?1333547362
My knee is jerking alright.

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.
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Avatar universal
NYGirl:   Geno 1 detected at weekl 12 and UND at week 24 gets the BEST chance at beating HCV from doing 72 weeks.
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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.
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179856 tn?1333547362
Geno 1 detected at weekl 12 and UND at week 24 gets the BEST chance at beating HCV from doing 72 weeks.  If someone wants to wait until they are stage 3 before doing this that is their perogative but...they have the BEST chance at SVR doing 72.

No more no less no other answer is proven by fact.
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Avatar universal
NY: 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
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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.
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Avatar universal
Jim: 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.
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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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