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bocepivir help!
i've been offered by my doctor to do the bocepivir trial and there is no placebo. i'm scared because: 1. what kind of long term health issues could be associated with this new drug? since it's new it's only been being tested on people about 10 yrs compared with soc which has been around over 20. i'm worried about potential long term side effects. and 2. will it make treatment harder than just soc, like due to a higher potential for anemia? i heard the growth shots (ie procrit) can be very painful.
so can anyone please offer me any suggestions!! i haven't done any type of treatment yet so i'm elligible but after i start soc i am no longer eligible for this trial but this new drug is coming out soon anyway. what if the SOC works for me?? would it be better to just stick with it? i don't know what to do! please any advice/experience???
so can anyone please offer me any suggestions!! i haven't done any type of treatment yet so i'm elligible but after i start soc i am no longer eligible for this trial but this new drug is coming out soon anyway. what if the SOC works for me?? would it be better to just stick with it? i don't know what to do! please any advice/experience???
i did boc trial. und at 6 weeks. now just did 6 months eot yesterday. waiting on results tx was not bad at all. worked all through it. anemia was my only problem. but procrit took care of that. was not bad at all. go for it.
I'm doing a boc rollover trial now and just got the word that I'm undetectable between week 3 and 6. I was <25 at week 3 but dectectable. That is is impressive since I was in the placibo group of the previous trial and did not clear by week 13. I did soc a few times and can not tell the difference with boc. I always had to take procrit and never had a any pain from it beside the needle stick.
With that being said, if you have low or no liver damage you can afford to wait until they fine tune the dosages and get the best results.
Cando forgot to mention that he is svr.
With that being said, if you have low or no liver damage you can afford to wait until they fine tune the dosages and get the best results.
Cando forgot to mention that he is svr.
Did boceprevirs last trial, also had done just SOC before. As for the sides, wasn't much different. Why not do the trial and have the best shot at it? Besides there are no co-pays it all free... Best to you
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P.S. I just re-read your question and want to clarify one thing: if you intend to treat either with SOC or do this trial, I would personally without hesitation choose the trial. The better shot at SVR is well worth the increase risk of various sx, IMHO.
If it were me I would do it. Your side effects may be increased by the Boceprevir, and you will have a higher chance of getting anemic, but your odds of SVR will be much higher. The HCV poses more of a risk over time than the potential long-term sx of the drugs. Of course some people do have very bad long-term effects, but I believe the disease itself is a good bit more likely to cause bad long-terms effects than the cure.
Then again, I guess given your age if you were Stage 0 or Stage 1 you could certainly decide to wait in the hopes of a treatment that didn't involve interferon and riba... but then you'd likely be using drugs with an even shorter track record, and that seems to trouble you.
The problem is, with HCV, no cure exists that is without risks of its own. So you have to weigh all the benefits and risks, including the risk of doing nothing, and try to determine which risks you can best tolerate.
I hope whatever you do works well for you, and good luck!
Then again, I guess given your age if you were Stage 0 or Stage 1 you could certainly decide to wait in the hopes of a treatment that didn't involve interferon and riba... but then you'd likely be using drugs with an even shorter track record, and that seems to trouble you.
The problem is, with HCV, no cure exists that is without risks of its own. So you have to weigh all the benefits and risks, including the risk of doing nothing, and try to determine which risks you can best tolerate.
I hope whatever you do works well for you, and good luck!
first, you will see far more side effect complaints in a forum like this than in the general populace...folks who sail through tx go on with their lives, only pop into forums occasionally...people who struggled with treatment and/or after effects tend to need the support of forums more...and more empathy perhaps...but it means that the balance or the ratio of horror stories may seem unproportioantely high in here.
two: you are young and still in relatively good health so your chances of having servere reactions is less than those of us treating in our 50's or 60's. We have more issues because our bodies don't snap back or heal as well..so you have that advantage.
three: you have to weigh what you do or risk against what you risk by doing nothing.
I read up on what liver failure is like...and that helped me decide.
four, if the trial will give you procrit that's half the battle, knowing if you need it you can get it goes a long way.
five: I used the procrit for a year, without pain, for what that's worth.
six: if you are stage 1 or 2 you might want to consider waiting until the drugs are approved, simply because by then you would get a full dose and full course of treatment. Right now trials give different doses, and stop some folks at 6 months...because they are trying to ascertain whether this will work...the down side..it may not work as welll...and if you got lower dosing or time, then it would have been suffering in vain, and you'd have to repeat treatment later...
seven, on the other hand if you have the support of your family...and you can slow down, not take a full credit load...you may be able to get through school and the trial and come out ahead at the end of it all. tough call, but certainly having a new job, and treating for chemo would not be easy to pull off...so maybe now is a good time for you to treat.
I don't envy you trying to decide, it's very hard...but I'd say that at the very least don't think in terms of how hard something may be...lots of things in life are very hard, but we make it through somehow...and sometimes even become better people as a result. In any case, there's no way to tell whether you'll have mild or severe side effects so assuming the worst is certainly not in your best interest.
I know that everyday I get behind the wheel of my car I could die...I could end up mangled, crippled, god only knows...but if I focus on what might go wrong, I'd be parylized and never enjoy the trips or the places I get to go, or things I get to do...focusing on what might go wrong is counterproductive for all of us.
Hope for the best, and deal with things as they come up...and like 99% of us, you'll make it through.
mb
two: you are young and still in relatively good health so your chances of having servere reactions is less than those of us treating in our 50's or 60's. We have more issues because our bodies don't snap back or heal as well..so you have that advantage.
three: you have to weigh what you do or risk against what you risk by doing nothing.
I read up on what liver failure is like...and that helped me decide.
four, if the trial will give you procrit that's half the battle, knowing if you need it you can get it goes a long way.
five: I used the procrit for a year, without pain, for what that's worth.
six: if you are stage 1 or 2 you might want to consider waiting until the drugs are approved, simply because by then you would get a full dose and full course of treatment. Right now trials give different doses, and stop some folks at 6 months...because they are trying to ascertain whether this will work...the down side..it may not work as welll...and if you got lower dosing or time, then it would have been suffering in vain, and you'd have to repeat treatment later...
seven, on the other hand if you have the support of your family...and you can slow down, not take a full credit load...you may be able to get through school and the trial and come out ahead at the end of it all. tough call, but certainly having a new job, and treating for chemo would not be easy to pull off...so maybe now is a good time for you to treat.
I don't envy you trying to decide, it's very hard...but I'd say that at the very least don't think in terms of how hard something may be...lots of things in life are very hard, but we make it through somehow...and sometimes even become better people as a result. In any case, there's no way to tell whether you'll have mild or severe side effects so assuming the worst is certainly not in your best interest.
I know that everyday I get behind the wheel of my car I could die...I could end up mangled, crippled, god only knows...but if I focus on what might go wrong, I'd be parylized and never enjoy the trips or the places I get to go, or things I get to do...focusing on what might go wrong is counterproductive for all of us.
Hope for the best, and deal with things as they come up...and like 99% of us, you'll make it through.
mb
The informed consent for boceprevir states that it will cause additional reduction of both hemoglobin and neutrophils. I was in Sprint-2 (the phase 3 trial for boceprevir) and I think the informed consent was correct. I also had diarrhea, which led to bone loss due to malabsorption (could not absorb vitamin D) but bone loss probably would not have happened if the diarrhea had been managed (take some pepto bismol, please). Just bad luck for me.
The boceprevir interferes with viral replication after interferon and riba have reduced viral load and gotten the immune system primed to add a third, more specifically targeted drug (boceprevir). Specific is good. Means the drug is theoretically targeting the virus itself, not the whole immune system like SOC does. If I was only going to give TX one attempt, I would definitely add boceprevir or its very similar competitor, Teleprevir, for a much greater chance of SVR and for an opportunity to treat for 28 weeks instead of the traditional SOC 48 weeks (TX time is dependent on being undetectable after 4 weeks of boceprevir).
The boceprevir interferes with viral replication after interferon and riba have reduced viral load and gotten the immune system primed to add a third, more specifically targeted drug (boceprevir). Specific is good. Means the drug is theoretically targeting the virus itself, not the whole immune system like SOC does. If I was only going to give TX one attempt, I would definitely add boceprevir or its very similar competitor, Teleprevir, for a much greater chance of SVR and for an opportunity to treat for 28 weeks instead of the traditional SOC 48 weeks (TX time is dependent on being undetectable after 4 weeks of boceprevir).
Hi everyone,
I'm in the same boat except i am 60yrs. I would be giving the same treatment as mentioned. I to do not know what decison to make. I have been healthy all my life and not experience any effects from Hepc. What are the success rate for someone in my age group.
Thanks
I'm in the same boat except i am 60yrs. I would be giving the same treatment as mentioned. I to do not know what decison to make. I have been healthy all my life and not experience any effects from Hepc. What are the success rate for someone in my age group.
Thanks
dont have any doubts about starting a trial with BOC. Sooner you start, the better, and higher chances of achieving SVR. As stormrider said, you are young, and youll get over it easy. So go ahead, and have no fear!
I am currently in the trial of which you speak and I am extremely grateful to have been accepted. Everyone reacts differently to the meds and you really won't know how you will react until you start. There is a rule I have come to live by, "One day at a time." I believe to be guaranteed all study drugs without a placebo arm is a gift I couldn't kick to the curb. I am currently in week 4 so the boceprevir will be added late this week. SOC in the first 4 weeks has not been easy on me yet I am looking forward to the addition of the BOC to outsmart those little virons. Two reasons sold me on this trial: 1) the success rate of boceprevir. 2) no placebo. I personally did not want to gamble on any trial not knowing what arm I maybe placed.
I am certain others will offer their advice but ultimately the decision is yours to make. I wish you the best.
I am certain others will offer their advice but ultimately the decision is yours to make. I wish you the best.
Hi YLWF,
I finished a phase 3 Boceprevir trial last May, started in Nov. 2008. Was declared SVR in October, will have my 12 month test in May, so far all is good. I do feel better than before treatment, however the treatment was rough. I was lucky and treated in the 28 week arm vs the 48 week arm, and didn't need any rescue drugs. I don't know how it compares to SOC as this was my first time to treat. Other people that have experienced both say there was very little difference in side effects, and there were a few that didn't do so well. One thing you need to keep in mind is everybody handles treatment differently, no two are the same.
You are very young and should do well either way you decide to go, youth has a lot of advantages when treating this disease. When I made my decision to treat with the BOC trial, I was more focused on increasing my odds from 50% SOC to 80% with BOC and SOC, this was also based on my age group. I was also hoping for the shorter treatment. I believe your age group has much better odds with SOC, but would be even better with the BOC added to the mix. Looking back I have no regrets.
How long would you be treating in the new trial, and what is the drug mix? Wishing you all the best in your treatment journey. Take care.
I finished a phase 3 Boceprevir trial last May, started in Nov. 2008. Was declared SVR in October, will have my 12 month test in May, so far all is good. I do feel better than before treatment, however the treatment was rough. I was lucky and treated in the 28 week arm vs the 48 week arm, and didn't need any rescue drugs. I don't know how it compares to SOC as this was my first time to treat. Other people that have experienced both say there was very little difference in side effects, and there were a few that didn't do so well. One thing you need to keep in mind is everybody handles treatment differently, no two are the same.
You are very young and should do well either way you decide to go, youth has a lot of advantages when treating this disease. When I made my decision to treat with the BOC trial, I was more focused on increasing my odds from 50% SOC to 80% with BOC and SOC, this was also based on my age group. I was also hoping for the shorter treatment. I believe your age group has much better odds with SOC, but would be even better with the BOC added to the mix. Looking back I have no regrets.
How long would you be treating in the new trial, and what is the drug mix? Wishing you all the best in your treatment journey. Take care.
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