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Telaprevir, Boceprevir ... Should I TX?
Hi All,
It's been an eon since I asked a question here (at least a year--or maybe several), but this is how it stands. I just got the results back from the biopsy I had done last week. It shows absolutely no change (grade and stage wise) since the last biopsy I had in 2002, almost exactly six years ago. (I am a grade 1, stage 2). I have geno 1b. Usually a low-ish VL (under 1mil) and no symptoms (every time I think it's the hep it turns out to be something like menopause or Vit D deficiency or the like). I think I've been infected for almost 50 years (since I was six or seven).
As a TX naive patient, I have been asked to participate in the Boceprevir study. I am very interested in doing this because I have the time with relatively few commitments and the chances of clearance are finally good enough that it's very tempting. I'm also not getting any younger, and am currently insured (even though I got laid off from a job in July). (Not that I need insurance for the study, but it makes me feel more secure about the whole thing.)
So, one of my questions is: is there any advantage of Telaprevir over Boceprevir?
From the little information I've found, it sounds like Boceprevir has fewer sides and they both seem to be enough of a "magic pill" to make the SOC actually work (at least more of the time). My understanding of the Boceprevir trial is that of the three arms, if I end up on the non-PI arm and officially don't clear, at that point they would give me the PI.
I'm looking to the wise and knowledgeable folk on this board to let me know what they think. Should I? Shouldn't I? Is there an advantage to waiting any longer? I've always been adamant about waiting (a looong time ago I got into some rather rough words with folks on this board because my stance was so unpopular), and felt a definite advantage at not messing with my strain of HCV and immune system. So now it's somewhat weird to be standing at the starting line, and I'm a bit uncertain. Your thoughts and opinions, please.
It's been an eon since I asked a question here (at least a year--or maybe several), but this is how it stands. I just got the results back from the biopsy I had done last week. It shows absolutely no change (grade and stage wise) since the last biopsy I had in 2002, almost exactly six years ago. (I am a grade 1, stage 2). I have geno 1b. Usually a low-ish VL (under 1mil) and no symptoms (every time I think it's the hep it turns out to be something like menopause or Vit D deficiency or the like). I think I've been infected for almost 50 years (since I was six or seven).
As a TX naive patient, I have been asked to participate in the Boceprevir study. I am very interested in doing this because I have the time with relatively few commitments and the chances of clearance are finally good enough that it's very tempting. I'm also not getting any younger, and am currently insured (even though I got laid off from a job in July). (Not that I need insurance for the study, but it makes me feel more secure about the whole thing.)
So, one of my questions is: is there any advantage of Telaprevir over Boceprevir?
From the little information I've found, it sounds like Boceprevir has fewer sides and they both seem to be enough of a "magic pill" to make the SOC actually work (at least more of the time). My understanding of the Boceprevir trial is that of the three arms, if I end up on the non-PI arm and officially don't clear, at that point they would give me the PI.
I'm looking to the wise and knowledgeable folk on this board to let me know what they think. Should I? Shouldn't I? Is there an advantage to waiting any longer? I've always been adamant about waiting (a looong time ago I got into some rather rough words with folks on this board because my stance was so unpopular), and felt a definite advantage at not messing with my strain of HCV and immune system. So now it's somewhat weird to be standing at the starting line, and I'm a bit uncertain. Your thoughts and opinions, please.
Just to summarize in a personal sense, my life and health (outside my liver) is not better since treatment. To the contrary. Treatment lost me two years of work and friends and aged me ten years. Nothing was better afterward. Yes, I felt I made the right decision because I was told between stage 3 and stage 4. But if I was told I was stage 2, no way would I have treated then. And knowing what I do now, no no way would I treat as a stage 2 to do it all over again. But of course, YMMV.
Willing: However with respect to waiting, you really have to ask yourself what you're waiting for
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First, as you stated, one might wait for both better odds and/or shorter treatment duration.
But the other thing is that "watch and wait" doesn't mean necessarily waiting for any particular treatment. In short, one might simply wait to wait, or another way of saying is that one waits because one prefers not treating to treating.
Assuming that the HCV isn't impacting one's health outside the liver, and assuming the liver is being monitored and no progression is noted -- it's very reasonable to simply wait until one reaches a point where treatment might be indicated either because of health factors or liver damage.
In other words not treating is a decision in and of itself to be compared against treating which has its inherent risks. So at the point one decides to treat, then jump in with the best treatment available.
That is in fact what I and many other "waiters" did. I wasn't waiting for Telaprevir or Boceprevir (they didn't exist) -- I waited for many years because I felt the risk of treating outweighed the risks of not treating.
In very, very short -- for some treatment may never be necessary -- and could reasonably withheld until even a more gentle and more effective treatment comes along.
-------------------------------
First, as you stated, one might wait for both better odds and/or shorter treatment duration.
But the other thing is that "watch and wait" doesn't mean necessarily waiting for any particular treatment. In short, one might simply wait to wait, or another way of saying is that one waits because one prefers not treating to treating.
Assuming that the HCV isn't impacting one's health outside the liver, and assuming the liver is being monitored and no progression is noted -- it's very reasonable to simply wait until one reaches a point where treatment might be indicated either because of health factors or liver damage.
In other words not treating is a decision in and of itself to be compared against treating which has its inherent risks. So at the point one decides to treat, then jump in with the best treatment available.
That is in fact what I and many other "waiters" did. I wasn't waiting for Telaprevir or Boceprevir (they didn't exist) -- I waited for many years because I felt the risk of treating outweighed the risks of not treating.
In very, very short -- for some treatment may never be necessary -- and could reasonably withheld until even a more gentle and more effective treatment comes along.
no doubt that r7128 is one of the more promising stat-c candidates - and congratulations on getting into the study and on your RVR. However, as far as I know, there are not yet any large scale studies recruiting for it - in fact Roche/Pharmaset seem to be dragging their heels in that regard (perhaps you as have some insight as to why, particularly now that r1626 trials are not likely?)
However with respect to waiting, you really have to ask yourself what you're waiting for ("Good things might come to those who wait; Not to those who wait too late "). For someone with GB's profile, the odds from BC (lead in + 48) appear to be around 80% and are likely to be at least that for TV/48 based on the prove 2 data. Reasons to wait might be even better odds or shorter - say 24w tx but both of those are far from certain. For example, assuming a generous 90% SVR rate amon the R7128 RVRs still gets you back to the same 80%. Meanwhile the clock keeps ticking , with accompanying fibrosis progression and decreasing SVR odds.
However with respect to waiting, you really have to ask yourself what you're waiting for ("Good things might come to those who wait; Not to those who wait too late "). For someone with GB's profile, the odds from BC (lead in + 48) appear to be around 80% and are likely to be at least that for TV/48 based on the prove 2 data. Reasons to wait might be even better odds or shorter - say 24w tx but both of those are far from certain. For example, assuming a generous 90% SVR rate amon the R7128 RVRs still gets you back to the same 80%. Meanwhile the clock keeps ticking , with accompanying fibrosis progression and decreasing SVR odds.
I agree with Jim, he is usually right on with his advice.
With no change in 6 years you may have to to wait to see how the other drugs shake out. I am in a early trial of the polymerase inhibitor R7128. I cleared by week 4 (VL 8 million to UND) and I was still clear at week 24.
The early data showed 88% of geno 1's (naive) cleared at week 4, and 90% of geno 2 and 3 non-responders. It has shown no evidence of viral mutation and had no adverse sides. Unfortunately you still have to take it with peg and riba and get all those sides. It is still early and SVR data is not back. I imagine in 6-9 months that data willbe in for the early arms.
My guess is future trials will shorten the duration of the peg/ riba part to 24 weeks from 48, but that is just a guess. It is not based on anything I have heard. It would be nice if they can lose that part altogether.
Ultimately this is a personal choice and one you have to weigh for yourself. If you are not comfortable wait, if you are comfortable with what is going on then treat. They are making great progress with these new drugs. Just remember that they are still using them with Peg and Riba. Those drugs are not a picnic.
Here is study if you want to read what I referred to on R7128:
http://www.natap.org/2008/AASLD/AASLD_22.htm
With no change in 6 years you may have to to wait to see how the other drugs shake out. I am in a early trial of the polymerase inhibitor R7128. I cleared by week 4 (VL 8 million to UND) and I was still clear at week 24.
The early data showed 88% of geno 1's (naive) cleared at week 4, and 90% of geno 2 and 3 non-responders. It has shown no evidence of viral mutation and had no adverse sides. Unfortunately you still have to take it with peg and riba and get all those sides. It is still early and SVR data is not back. I imagine in 6-9 months that data willbe in for the early arms.
My guess is future trials will shorten the duration of the peg/ riba part to 24 weeks from 48, but that is just a guess. It is not based on anything I have heard. It would be nice if they can lose that part altogether.
Ultimately this is a personal choice and one you have to weigh for yourself. If you are not comfortable wait, if you are comfortable with what is going on then treat. They are making great progress with these new drugs. Just remember that they are still using them with Peg and Riba. Those drugs are not a picnic.
Here is study if you want to read what I referred to on R7128:
http://www.natap.org/2008/AASLD/AASLD_22.htm
cando - hope you had a good thanksgiving - and best of luck going forward
GB - yeah, brave new world indeed; think of the level of confusion around here once there's a dozen different options to mix and match...
As far as tx vs bc - my sense is you're making a good choice. . Telaprevir has yet to report anything that tops boceprevir's 74% svr12 from sprint II (and since that's ITT you can expect better odds if you follow though with tx). However, Schering's current edge is likely to be short-lived : Vertex's prove II reported 69% on patients in the T12/PR24 arm and once their 48W data comes in they'll presumably at least match Schering.
GB - yeah, brave new world indeed; think of the level of confusion around here once there's a dozen different options to mix and match...
As far as tx vs bc - my sense is you're making a good choice. . Telaprevir has yet to report anything that tops boceprevir's 74% svr12 from sprint II (and since that's ITT you can expect better odds if you follow though with tx). However, Schering's current edge is likely to be short-lived : Vertex's prove II reported 69% on patients in the T12/PR24 arm and once their 48W data comes in they'll presumably at least match Schering.
With no progression in six years you have time to wait for the drugs to come out of trial.
You will then have both more information on comparative results as well as more latitude which would make treatment more individualized with the right liver specialist.
Watch and Wait requires patience as these drugs come down to the finish line but they're almost there.
As to which is better now, I'd do a lot more independent research but if I had to choose now it would be Telaprevir hands down. They have the head start and just look at all the folks here like Andiamo who already SVR'd with Telaprevir. Seems like Bocaprevir is just getting going.
Docs offer you whatever trials they have slots to fill and not necessarily what's best for you.
Be well,
Jim
You will then have both more information on comparative results as well as more latitude which would make treatment more individualized with the right liver specialist.
Watch and Wait requires patience as these drugs come down to the finish line but they're almost there.
As to which is better now, I'd do a lot more independent research but if I had to choose now it would be Telaprevir hands down. They have the head start and just look at all the folks here like Andiamo who already SVR'd with Telaprevir. Seems like Bocaprevir is just getting going.
Docs offer you whatever trials they have slots to fill and not necessarily what's best for you.
Be well,
Jim
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