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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.
Yes I'm in a BOC trial, I was excluded from a telaprevir trial back at the beginning of the year. I always took that as a blessing as I feel very comfortable being in the study that I'm in, I only been in for 2 shots worth, so I just started. I'm glad to hear that you have educated yourself on HepC and the various tx plans and trials going forward. I have insurance as well, I didn't choose a trial to have someone pay for it as much as I like the personal care and monitoring that they do. Early on I was seeing a GI under my insurance and he was just an idiot. I met his NP and I asked her a few questions, she was nice enough, but her attitude toward me was very indifferent. At that point I realized, that I was just gonna get my meds from them and that would be it. There are alot of doctors and healthcare professionals who still look down on us heppers, that's how the GI and my HMO was. I was glad that I went back to the clinical trial site and found me an opening. good luck
Gator--oh best of luck with the final results. I'm rooting for you. And thanks for sharing your experiences.
willing--yes. i am willing to take the plunge. finally. and truly. ;) thanks for letting me know what is coming down the pipeline. i have had my eyes on VX950 (and the like) for quite some time. it's exciting to see there are more developments. it also seems that they are FINALLY thinking to tailor the tx to at least some variables with each patient instead of treating everyone with the same genotype the same. can you imagine how amazing it will be when they are able to really take an individual's genetic makeup and medical history into account when they devise a cure cocktail?
willing--yes. i am willing to take the plunge. finally. and truly. ;) thanks for letting me know what is coming down the pipeline. i have had my eyes on VX950 (and the like) for quite some time. it's exciting to see there are more developments. it also seems that they are FINALLY thinking to tailor the tx to at least some variables with each patient instead of treating everyone with the same genotype the same. can you imagine how amazing it will be when they are able to really take an individual's genetic makeup and medical history into account when they devise a cure cocktail?
No problem here my friend, heck i disagree with myself alot.:) I know one thing we will both agree on and that is we want everybody rid of this c.r.a.p. God bless and happy thanksgiving to you and yours.
Willing good to see you here, and thanks for all yours and frijoles help.
Willing good to see you here, and thanks for all yours and frijoles help.
well, well, finally taking the plunge..sounds like ayou've got a sound plan - with your profile I assume you're looking at odds in the high 70s or better with either of the ns3a PIs. Because of the different dosing regimes used in the Phase II trials it's hard to make a direct comparison but my impression is that the results are quite close. The Phase III data will make comparison easier, but given the similar underlying mechanism of the PIs and similar escape mutation profile, surprises seem unlikely. As best I can tell, the schedule for departing buses for SVR looks like (1) the ns3s phase III trials leaving now, (2) the phase II/III for r7128 trial 900518 and other gen II drugs over the next two years (3) tx post-TV/BC approval around 2011 and (4) combined ns3/ns5b PI trials starting ?
I'm in worse shape but still stalling because as a relapser I think I'll need better odds - probably bus 3 so I can at least add alinia, statins and anything else that crops up between now and then.
I'm in worse shape but still stalling because as a relapser I think I'll need better odds - probably bus 3 so I can at least add alinia, statins and anything else that crops up between now and then.
The following is what I have experienced so far...
I am in a Vertex trial...just finishing week #24. I didn't get the "rash". I learned that only 9% of patients get the "rash". I did itch a bit but found relief in a nice shea butter cream. I have fatigue and brain fog but most days weren't too bad. I developed some anxiety and appathy around week 10-11 and went on AD's. I did feel better after week 12 but it's hard to say why. I got more sleep as I didn't have to stay up late to take meds after week 12, I went on the AD's and went off the tripple therapy which could have been Telaprevir. My HGB dropped around week 5 or 6 and I took a riba reduction but no rescue drugs. I am still winded but my HGB is on the rise.
In six months I hope to report SVR. I wish you the best in what ever you decide to do.
Gator
I am in a Vertex trial...just finishing week #24. I didn't get the "rash". I learned that only 9% of patients get the "rash". I did itch a bit but found relief in a nice shea butter cream. I have fatigue and brain fog but most days weren't too bad. I developed some anxiety and appathy around week 10-11 and went on AD's. I did feel better after week 12 but it's hard to say why. I got more sleep as I didn't have to stay up late to take meds after week 12, I went on the AD's and went off the tripple therapy which could have been Telaprevir. My HGB dropped around week 5 or 6 and I took a riba reduction but no rescue drugs. I am still winded but my HGB is on the rise.
In six months I hope to report SVR. I wish you the best in what ever you decide to do.
Gator
Trust me. I know it's going to be very difficult. That's one of the reasons I've waited. I'm willing to do the difficult, though, *if* it's going to work. I've been reading hepC boards on and off for six years, so I've seen the highs and lows of it. I'm not so sure that knowing what I do is good, because sometimes it's better not to anticipate. Still, knowing the potential potholes on the road will help me not to freak out when I hit one.
Are you on one of the clinical trials?
Are you on one of the clinical trials?
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