An upcoming trial

Does anyone know anything about a trail coming up in September ?I went to Dr,Martinez(very well known liver specialist) out of Emory University in Atlanta ga today and he is going to try to get me into a trial that is supposedly starting in September.Its supposed to be a phase 3 trial.I didnt write down all the info(heck thats why i took my hubby!)anyway I wanted to try to get some info.Havent posted in a while but still read everything that everybody posts.Dr says this med boosts Geno type 1 from 40% to 80%.!M ALL FOR IT !!!!!Will be waiting for the trial coordinator to call me.

[susan400]

Do you know the name of the drug?  Would it happen to be starting with the letters BMS?  There are so many drugs in clinical trials, it would be helpful if you could post the name of the trial that you have heard about.  Are you a naive patient, or are you a non-responder patient?  Is the drug a protease inhibitor using standard Peg and Riba with it?  Or is it a polymerase inhibitor using standard Peg and Riba?  My advice is that if you do an inhibitor trial to make sure that you get the SOC with either the trial drug or a placebo.  What you definitely don't want is a trial which has an arm that using only the trial drug + Peg or only the trial drug + Riba.  I say that because I am in a situation now, due to having been in a trial which was a protease inhibitor trial and I was randomized into the group that did not include Ribavirin.  Now, I have exposure to the P.I. and w/o having had all 3 drugs, I did not clear, and I'm more than likely resistant to the Protease Inhib...., I think.  I do know that now, whenever I am trying to get into another trial, I'm turned down because of this exposure to the Protease and it has really messed me up.  Please post which trial you're thinking of.  There are many good trials out there and all of us only want the best for you.  Susan400

[limama51]

Go to ClinicalTrials.gov, and follow the directions.  You can find clinical trials in your area, and there are many going on across the country right now.

[EyesofBlue55]

I have not treated at all as of yet.Was going to do treatment the first of June but decided on a second opinion from a liver specialist and not a gastro dr.I have been exposed to Tb and have the antibodies for it and my gastro dr didnt know if the meds would activate Tb since the meds can cause lung infections.I want to do the right thing here.Am expecting a call from the trial coordinator and I will definatly ask these questions.Thanks for the info.The Dr did say that it could raise the odds of me clearing from 35 up to 75% if I got the real drug and not the placebo.

[Bill1954]

It sounds like you're going in the right direction by moving to a hepatolgist. The new drugs are collectively known as 'STAT-C', and will be used in conjunction with the current interferon and ribavirin. One of them, Telapriver may be approved and ready for the shelf as early as 2011; and yes, they dramatically increase the efficacy of HCV therapy.

Good luck--

Bill

[EyesofBlue55]

I think next time(next month) I go to see him I will take my recorder.Ha that way i wont forget anything.Dont think hell mind!!!Maybe Ill get lucky and not get the placebo if I do get into this trial.definatly gonna ask the questions though.

[Bill1954]

Yeah, or maybe take a friend along as a second set of ears. You could also ask for a copy of his clinical notes too; my hepatologist dictates on the spot and they're transcribed and carbon copied to me the next week.

Good luck--

Bill

[EyesofBlue55]

Hey Bill when you were diagnosed did you have any problems with your eyes?Mine ane not yellow and I just went to an eye dr to get new glasses,its just that I sometimes feel like There are things crawling around all the time.Sounds kinda funny but could this be the little buggers making my eyes feel this way???

[susan400]

I also wanted to make a comment on the TB exposure.  Before I was ever treated for the Hep C, my family practitioner ordered a whole bunch of tests.  I was working in his office as a transcriptionist so he really cared about me and wanted to get to the bottom of what was wrong with me.  He ordered full blood work on everything including EBV, CMV, Hepatitis Panel, Chem 24, CBC and gobs of other tests.  He also had me get a TB test.  The TB test came back reactive.  The EBV and CMV titers were both elevated and recently active.  BTW, the TB was done AFTER the blood was drawn, so it didn't affect the blood work.  The Hep panel came back with the positive on the Hep C.  Well, since I had the reactive TB AND the positive Hep C, my doctor immediately referred me to a gastroenterologist.  The gastro doc did my 1st liver biopsy and afterwards he recommended that I NOT treat the reactive TB, but just to monitor it with regular chest x-rays and repeat the TB test over a 2 yr period.  He said that the TB medicine is too toxic on the liver and that until the liver disease was clear that he would not use the TB meds on me, UNLESS the chest x-ray were to show active TB.  Sometimes you can be exposed to TB and never actually have TB.    Susan400

[EyesofBlue55]

You dont know how glad that I found you!!!!I thought  there was no one going through what i was.Since I was diagnosed with hep I have done a ton of reading and asking alot of questions.I have learned alot just from this forum.Here a little about me
1.55 yrs old
2.married w/ 2 teenagers
3Tested pos for tb antibodies 6 yrs ago(skin test)
4.Driven a school bus for 15 yrs(probably where I picked up the tb)
5Never used a community needle or shot drugs,so the hep thing was a mind blower!!!
6.Live just 35 miles south of Atlanta
7.Geno type 1,Grade 1 stage 2(or grade 2 stage 1)I might be backwards

Now I get regular chest x rays for the tb,always have come back ok.I know that the tb med is toxic to you.I have a regular Primary dr,a gastro dr,a kidney dr,and a obgyn(shes the one that discovered the hep).As soon as I found out at the obgyn office that I had the hep i went straight to my gastro dr(on the way home_no appt)She ran tests and concluded that I had hepc.We talked about the tb thing and she wasnt sure if the med for hep would activate the tb.Now I go to my primary for answers,He says to treat for the TB first  for 6 month because the hep med could cause lung infections and thats what tb is.Still not satisfied with that(it sounds as though I dont trust anyones opinion here but I want the best)i start researching for liver drs and found the one here at Emory that specializes in hepc.This is where He told me about the trial starting in Sept.Hes 40 miles away but worth it for me if Im going to get better treatment.He also teaches at Emory. He ran more tests on me the other day.
   So did you treat and how did it go?You say reactive Tb?Are you saying that you actually had TB?
Where do you live in Fla?I would really like to keep in touch with you .Maybe you can be the one that can ease my mind a little bit about this thing.I have family that  lives in Fla(Lake City and Lakeland)
Want to post pics but no one but family knows whats going on with me.My job or friends would have a field day with this one( I work with 300 gossipy women Ha Ha)  TTYL

[susan400]

I never had active TB, just a positive Tine test, reactive for the exposure to TB.  Normal chest x-rays x 2 yrs.  I chose not to do the TB meds because I was afraid of what it would do to my liver.  My doctor doesn't believe that I have the active TB since it never appeared on X-ray.

I have family in Lake City as well.  Contact me by a PM and we'll see what we can arrange, okay?  I'll be in Lake City on 07/16 through 07/20.  I have appt.s in North FL on 7/17 and 7/19 regarding something for my son.

Susan400