Aa
opportunity to treat free should I
I went to my doc today and was told about a Boceprevir trial coming up in Dec. Said it was basically the same thing as the Teleprevir, Just who is going to win the race. Are these the main promising PI that everyone is waiting for. I was a 0-1 on a fibrosure test and genotype 1A. was told when they do hit the market its going to be very expensive even with insurance i would have to pay 20% which would still be a lot. Im not complaining I am greatful that I have insurance right now. If I could get it for free.... Although would like to wait for something even better than that like no interferon. But is that a reality? I am 51 female. dont want to treat but I know I will sooner or later. I just had regular panels done to see how ALT and so on just today so I should know my liver panel and function by Thursday. I just dont want to miss an opportunity to not break the bank if this is all we have to look forward to maybe I should just get it over with. I had my fibrosure in May 09.. If everything looks quiet on the blood tests Iwas told I dont need to go back until April 2010 for another fibrosure test. Not looking forward to any of it either way. or Should I wait until they turn rabbit blueberrie leaves into a treatment? Any comments? Thanks in advance
Go for the trail. I am in telaprevir trial out of Baylor in Dallas, and the cost in nada. This is my second trial (did HALT C). If you have the opportunity, go for it. But make sure Liver Institute is up front with you. They strung me along for almost a year, promising several different trails, told me I was in, brought me back over and over - paying each time for blood work (me not thme) and then they just shut down any communication with me.
gat a call from Baylor, two weeks later, on meds and been <100/UND since week 4.
gat a call from Baylor, two weeks later, on meds and been <100/UND since week 4.
I was mystified by your statement of being switched to placebo but just went back and read the consent and figured out that you were detectable at wk 8 so were switched to boceprevir placebo at 28 weeks. I was not detectable and randomized out at 28 weeks but was really worried about being randomized into the group that spent 44 weeks on the boceprevir. Man, that would be rough! I guess it seems like a comparative cakewalk to go back to SOC for the last 20 weeks! It's very easy to tell you are on the boceprevir from the weird taste and gastro effects. Who do they think they are kidding with placebo blue pills? LOL.
ALL interested in trials: The last boceprevir trial opened and closed for enrollment pretty briefly. The trial for naives was only open for 3-4 weeks, according to my study nurse. I had the initial bloodwork screening, biopsy and took the first shot all within 19 days. If you are dealing with a center that is connected to the Shearing Plough trials (has done them before), see if you can contact them about pre-screening for the trials. The site where I was treated is anticipating another boceprevir trial to open this fall and they are trying to get it for their center. Keep checking www.clinicaltrials.gov. If a trial is open for enrollment they will list the sites where it's being held.
ALL interested in trials: The last boceprevir trial opened and closed for enrollment pretty briefly. The trial for naives was only open for 3-4 weeks, according to my study nurse. I had the initial bloodwork screening, biopsy and took the first shot all within 19 days. If you are dealing with a center that is connected to the Shearing Plough trials (has done them before), see if you can contact them about pre-screening for the trials. The site where I was treated is anticipating another boceprevir trial to open this fall and they are trying to get it for their center. Keep checking www.clinicaltrials.gov. If a trial is open for enrollment they will list the sites where it's being held.
WOW--Walrus is waiitng for the Boceprivir or Telepriver to become available..and FREE??? After 21 months on Interferon (paying about 40% of the cost ourselves) we could use the financial break! If we have an outside chance of TXing next time for free, I think I would be crying for joy.
Liz
Liz
expect a roller coaster. your red and white blood counts will go up and down but the nurses will monitor you closely and do blood counts weekly and give you procrit and neupogen (shots you give yourself) to level your counts out and make you feel as best as you can during the rough patches. expect hair loss with the bocep, more than with normal treatment peg/riba. but there is a very high cure rate.
I am just finishing up the boceprovir trial and yes, do it. i am still on weekly interferon and daily riba but i was switched to placebo from real bocep two months ago ( can tell by blood tests and lack of metal taste that i had during the real bocep) and am still undetectable. i was at 22 million when i started. i wrap up tx in 3 more weeks... making it a 10 (or is it 11) month trial
its not easy but do it. its just day at a time.
good luck!!!
its not easy but do it. its just day at a time.
good luck!!!
Where your AST and ALT are is not terribly important. You can't safely infer liver damage from them. Biopsy is best. Firbrosure blood test is a decent indicator too. Don't get me wrong - it's a good sign and low is certainly better than high. But don't bet the farm on those numbers alone.
the 36 and 37 were alt ast just a secretary called me with results so I will go in next week and pick up my labs.
the info i got from my doc was to call jo swearnngen (sp)at 214 947-4451 to check on status of clinical trials for naive patient that involve protease inhibitor or polymeraje (sp)Boceprivir (no placebo) tenative start date 12-09 having a hard time reading her writing. it is at the liver institute in dallas at the methodist dallas medical center I dont think I could handle the treatment right now. 36 and 37 so just not off the charts. not even sure that is out of range for some but they havent changed since may of 07. According to the doc they are elevated but I'll find out some more next week. I asked in another thread of you can get on ssdi or short terrm disability when you start treatment? That could be an option. Its a **** shoot. wait=good decision wait=bad decision. I am still getting over the shock of even having it. Just found out in May 09 for sure.
Yeah, I was wondering the same thing. I couldn't find any open Boceprevir trials except the one pjhep80 found.
do yu have hepatitis C and HIV?
i thought all the bocep trials were over, I searched on clinical trials.gov the only one currently recruiting is for hep-c and hiv or people who failed invitation only...
where are you and what trial is this I WANT IN haha
i thought all the bocep trials were over, I searched on clinical trials.gov the only one currently recruiting is for hep-c and hiv or people who failed invitation only...
where are you and what trial is this I WANT IN haha
I am in the current boceprevir trial and it's been an excellent experience for me. They paid for biopsy, other tests like chest x-rays & ECG, the 3 meds and procrit (rescue med for low hemoglobin). I paid for a psych consult and the co-pay on 3 doses of neulasta (rescue meds for low neutrophils). I had good care and felt like I had closer contact with the study staff than I would have gotten with my own GI. The best part about it was that I was responsive to the Bocep/IFN/riba therapy and was only treated for 7 mos. instead of the standard 11.
Schering Plough (boceprevir's maker) is up to all phase 3 trials now, so you will get the proper dose (that's determined in earlier phase 2 studies) and time period. I don't know if there is a placebo arm (IFN/riba but no boceprevir) in your trial, but if so, it would involve the same care and no expense.
Schering Plough (boceprevir's maker) is up to all phase 3 trials now, so you will get the proper dose (that's determined in earlier phase 2 studies) and time period. I don't know if there is a placebo arm (IFN/riba but no boceprevir) in your trial, but if so, it would involve the same care and no expense.
There are lots of factors to consider not just the medication and the free part. Do you have a good support system around you that can help you if you aren't feeling well? Things like that are important too...do you have a very hard stressful job etc. that might add to the lethargy of treatment? That is why it's such a really individual decision as to whether to treat or not - it's not just getting the meds which actually is the easier part.
That being said, on the whole I agree 100% and say grab the bull by the horns and get rid of the disease now while you have the chance to do it before you have more liver damage. I wish I had had that opportunity but I was already stage 3 by the time I was diagnosed.
That being said, on the whole I agree 100% and say grab the bull by the horns and get rid of the disease now while you have the chance to do it before you have more liver damage. I wish I had had that opportunity but I was already stage 3 by the time I was diagnosed.
I understand the reluctance to treat... my husband watched and waited until his biopsy began to show progression, and then he decided that it was better to go ahead and treat while he was still relatively young and healthy, and therefore had a better chance of clearing.
I, too, would probably take this opportunity. It seems that there is no treatment on the horizon that won't involve interferon and ribavirin for quite a while. By that time you could be in much worse shape and you would obviously be older.
Good luck with whatever you choose.
I, too, would probably take this opportunity. It seems that there is no treatment on the horizon that won't involve interferon and ribavirin for quite a while. By that time you could be in much worse shape and you would obviously be older.
Good luck with whatever you choose.
I would grab the chance to do it. Definitely!
You will be in good hands. You'll be followed very well and will be sure that the doctors and nurses know what they are doing. You just need to be 100% compliant. It will be a lot of clock work when to take your meds etc, as they will have to be taken on time. But they give you all the tools to work with. It will be so worth it!
You will be in good hands. You'll be followed very well and will be sure that the doctors and nurses know what they are doing. You just need to be 100% compliant. It will be a lot of clock work when to take your meds etc, as they will have to be taken on time. But they give you all the tools to work with. It will be so worth it!
yes im pretty sure they r the promising pi ev1 is waiting for,i sure know i am and many others i know.
i would give my right arm for this trial,like hca said people would give anything to get this opportunity etc.
i think ev1 shoul treat as soon as they can, even if they dont feel they want to or need to cos the healthier our liver is the more successful tx is iv read and heard many a time,and even in a few yrs our livers can get get more damage,but not ev1 of course but its better to b safe than sorry i think.
i wish i hadnt of put it off but i finally realised when a freind put it off and it didnt pay off,he put it off 5 yrs or so and in 5 yrs there liver went from ok to not real gd and he got diabetes now and if he had of treated yrs ago he probly would have had better chance,cos he was healthier and had no diabetes.
i would give my right arm for this trial,like hca said people would give anything to get this opportunity etc.
i think ev1 shoul treat as soon as they can, even if they dont feel they want to or need to cos the healthier our liver is the more successful tx is iv read and heard many a time,and even in a few yrs our livers can get get more damage,but not ev1 of course but its better to b safe than sorry i think.
i wish i hadnt of put it off but i finally realised when a freind put it off and it didnt pay off,he put it off 5 yrs or so and in 5 yrs there liver went from ok to not real gd and he got diabetes now and if he had of treated yrs ago he probly would have had better chance,cos he was healthier and had no diabetes.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
