teleprivir and waiting????

[jt57]

Had my biopsy yesterday.  The Dr. said that my tissue "looked good" and he wanted me to think about "waiting" for treatment.  He is doing a teleprivir  trial starting this summer for 1b patients that have never had any previous treatment. We were going to start immediately on the current SOC.  I'll get my actual results on Wednesday, so I will actually have more to go on then.

What do you guys think?  Is the teleprivir an injection, or a pill?  How about side effects?  

I am hoping that the doc stating my tissue looked good is indicative of a good report!!!!  

Appreciate all the support out there!  I was really scared about the biopsy, but this forum convinced me I needed to do it.  You guys are a great support system.. I'll do my best to contribute what I can to the forum as well!!

Jean

[Andiamo1]

Telaprevir is a pill that has to be taken a few times a day.  Some people get a rash from it and some get nausea.  I have failed previous treatment 7 times, but Telaprevir seems like it has a good chance of working for me.  I did not get a rash, but did have some nausea.

My viral load went from 8 million to <30 in one week and undetectable by week 2.

The treatment is only 24 weeks as compared to the standard of 48 and that is a huge plus.

Good luck with your decision.

[jt57]

wow!   so you are taking teleprivir presently?  what genotype?  Congrats on the viral drop!  It sounds like it may be easier onthe system than the present SOC.  Hopefully it works for you this time!

[copyman]

I think you may have misunderstood, telaprevir is taken along with the current harsh drugs. any new drugs are in combination with interferon & ribaviron. maybe someday they could elimanate interferon & ribavirin but for now it is part of the mix

[Andiamo1]

Copyman is correct; sorry for the confusion.  The proposed protocol for Telaprevir is to take all three drugs (Telaprevir, interferon and Ribaviron) for 12 weeks followed by interferon and ribaviron for an additional 12 weeks.

I am geno 1A.  I just completed a phase 2 trial with it two weeks ago.

[dointime]

If the choice is between starting SOC now or waiting till the summer and getting into a telaprevir trial then it's a no-brainer, you go for the trial.  Telaprevir will give you a significantly better chance of clearing the virus.  Worse case scenario you get to be in the control group of the trial and then you don't get telaprevir, you get SOC alone.  So what's to lose by waiting for the trial and having a great chance of getting telaprevir as well.  

dointime  

[jt57]

Thanks!  Sounds like the study trial is something I should seriously consider.  Hopefully, my results are good on Wed. and I can wait to start treatment in a few months!  

Jean

[moahunter]

There are advantages and disadvantages to trials. The big advantage seems to be cost. Additionally, you may get access to a better treatment, long before other people. The disadvantages can include an inability to modify your treatment regime, and additionally, that you are in effect a guinea pig for the rest of us. The worst case scenarios include unanticipated side effects, or developing resistance to a future treatment. Whatever you decide, good luck with it!

[working dog]

you don't even know what your bx results are yet...sounds to me that you may do ok with your results...if you do good why not wait for tx in the future?....i know i get anxous to tx but have waited two years now and i think i'll wait a little longer to see how things go with all the new stuff out there...keep in mind lots of folks have sx after tx...some do real well...maybe if i was a better geno to tx i might go for it..but 1a i would at least think about waiting a couple years...i know whether to tx or not depends on lots of things though.....billy

[beatrice57]

Your comment on telaprevir is interesting - is it already on the market or are you on a special study? can you tell me what SOC stands for (french girl and not familiar with a lot of abreviations used in this forum!)
thank you

[jt57]

My doctor is wanting to put me in a study trial for telaprivir.  It is not on the market yet.  I am a 1b, and it seems to be my best chance for clearing the virus.

Jean

[copyman]

SOC = Standard of Care (regular treatment drugs) in this case the regular drugs are interferon & ribavirin

[ouc]

I am geno 1b stage 1 1mil VL.On 9/25/08 I am starting PHASE  3  STUDY OF TELAPREVIR IN COMBINATION WITH INTERFERON AND RIBAVIRIN TREATMENT . Need some feedback from anybody who has completed
PHASE 2 STUDY.

[nygirl7]

Trials do have pro's and cons - one of them being you don't usually have access to the so called "rescue drugs" that come in very important if you should need help with the hemolytic anemia that we oftentimes get.  But if you do get the triple cocktail you will perhaps have a better chance at killing the disease quicker - although you may have much more problems with the side effects (you won't have "less" because you are hopefully adding on a drug not replacing one).

Also - you need to be in the correct version of the trial and you don't get to pick. Some don't include all three of the drugs and this is a very big disadvantage - you NEED at least the interferon and ribavirin (SOC) in order to have a chance to clear the virus. Adding on the telepravir is one thing but losing the riba.........well that is something you most definitely positively don't want to happen.  If you should fail and need to treat again it would be a disadvantage as you could developed a resistance and it would be harder.

That said - as Andiamo can tell you for him it was an absolute miracle.

You need to find out exactly what your biopsy is.  Telling you your tissue looks good means nothing at all really.  You need to call the doc and ask him what stage and grade you are. THEN you can make a much better educated decision on waiting or not waiting etc. (although honestly six months either way shouldn't most likely matter very much).

I treated for 72 weeks and have been cured for almost two years. I did regular treatment but my viral load didn't go down quickly enough so I opted (begged to) do longer but in most cases as a geno 1b you have a 50/50 chance of success and only have to treat for 48 weeks.

It's all a big giant gamble - there are no guarantees unfortunatly with this disease but getting the most information you can will help you make the best decision.

Get the biopsy results first thing!

Good luck.

[jmjm530]

Telaprevir is not a little magic pill that "poof" makes Hepatitis C go away. You take it along with a weekly injection of peg interferon and ribavirin. You can therefore expect the same side effects if not more. Yes, it's showing itself to be a better alternative than conventional treatment (better results in half the time) BUT if your doctor is telling you that you have time to wait because of little liver damage, then I would take his advice seriously. The advantage to waiting is that things will only get better in the future in terms of treatment alternatives and you won't have to go into a trial where you may get a placebo drug, meaning you may not get Telaprevir at all.

-- Jim

[nygirl7]

Yes there are so many variables - you really need to find out your grade and stage before thinking too hard because there are just so many different options.

Of course some of us decided we would treat no matter what the biopsy outcome anyway - and others like Jim would not treat until at least stage 3. To me that's cutting it too close (although I was a 3 I had decided I would treat and kill it off regardless before I found out)...but as you see it all depends on what you think and your own information.

If you can wait and have very little damage - you might want to see where tele ends up and not take the risk of a trial.

[blonde333]

when you say this

"If you should fail and need to treat again it would be a disadvantage as you could developed a resistance and it would be harder."

What do you mean. resistance to the drug in trial or SOC. I read this and this is a concern for me I just cant find any articales that talk about it. I also heard something about mutating????
Any input would be appriciated

[nygirl7]

Mutating, resistance - all these things are of great concern to heppers.  The first time you do treatment you have the very best chance of clearing because of these things. The second time it gets a bit harder and you have to increase dosages - go longer...to make sure you get all those suckers and then to train your body to fight them off for good.

Take it from me, we've seen a lot of GREAT people who did not succeed with treatment the first time but that did succeed on the second so it shouldn't scare you.  

I'm not an expert in this field though - instead of stopping at week 48 I continued on to extend to 72 weeks because I didn't want to try again later and that worked for me.

Have you treated already?

[blonde333]

No I have not tried yet, my doctors office called and asked me if i wanted to participate in a phase 3 trial with schering and plough. So are you saying that it isnt the trial drug that is making you mutate or become resistent it is the SOC. I am geno 1 last biopsy showed 0 scaring and 1 inflamation (inflammation). Another concern i have is I am very skinny could that make the sx worse? Thanks for your reply.

[Marcia2202]

it is the resistance to the Telaprevir they are talking about, not SOC

[blonde333]

Thank you.

[Isobella]

In the Vertex tx naive trial they monitor your response to tx.  If your vl does not drop to under 1000 in the first 4 weeks, you have to stop.  This is to discourage mutations.

At least that is the way it was explained to me on my 6 week visit.  I was told I was allowed to continue for that reason.

[pjhep80]

'am geno 1 last biopsy showed 0 scaring and 1 inflamation (inflammation).'

with stats like these i would think very very very hard about trying any tx right now...trial or SOC...  you most likely have alot of time to wait

[pjhep80]

what i mean is::

if you have zero scaring and almost zero inflammation i dont now why you would even entertain the thought of TX right now... or why your dr would suggest putting you  through it, trial or SOC...

you most likly have a very very long time before you have to worry about your liver... you can wait years for better treatment...

[blonde333]

He says that the earlier I treat the better my chances at clearing are. He also said with no scarring and me being skinny would also make my chances a higher percentage then the 50%. The last 2 in a half years I have been drinking on weekends but alot when I do. like 5-6 shots and couple beers, so I wonder what my liver is now?