I am on my 3rd Hep-C treatment. The other 2 failed. This time I am doing Co-pegisus, Ribiviron, and a new drug Incivek. The side effect are horrible. I can not work, barely able to get out of bed and I the emotional drama is wicked. I have lost almost 30 lbs in 2 months. Dispite all the side effects, I found out on friday that the hep-c is not showing up in my system. It looks like I may be beating this after all. Talk to your doctor, if he decides you are a canidate talk to him about going on temprary disability. Just remember it is 12 weeks of hell but worth it.
Good Luck,
VJF5554
Here's a comprehensive list and chart of phase of development as of June 2011..
There are over 140 drugs and Immune Modifiers and Other Non-specific Drugs targeting HCV in development , most in phase 1 or 2 .
Yes. This is true. I missed that part of the post. It is much to early in the stage of these trials to determine SVR sustained viral response. It is nice that people are achieving RVR rapid virological response in such numbers with the new orals but we have only to look at Adam's situation to know that breakthroughs can happen. Virons can and do lurk under the radar of the tests. However, if you wait until those SVR results are out (next year August for my trial), the opportunity for the trial you want may well have passed you by. Once again. Pick your poison :)
UND is not necessarily virus free - this is why we continue to do treatment after we are Undetectible and why after stopping meds the virus sometimes comes right back (relapse) or it comes back during treatment (breakthrough).
Just to make it clear for you so you understand the whole process. It is why we continue to have PCRs six months to a year after treatment (and most of us who are SVR continue to have them yearly for a few years after that).
Linda, I PM'd you. Check out some of the new postings.
http://www.thestreet.com/video/11263397/the-next-big-thing-in-biotech-hep-c-drugs.html#1191420028001
and
http://www.fiercebiotech.com/story/pharmasset-impresses-oral-hepc-treatment/2011-09-30
Hi, This is Linda again. I had mentioned previously about getting in the
Quantum trial. (Pharmasset). You said you are virus free. How long
post treatment for you. I am a little concerned about building resistant and also in this trial there is an arm that is straight placebo. Pharmassett won't tell you or the study docs what arm you are in or VL or any test results. Just for emergencey purposes. This bothers me some. I am trying to decide whether to get with trial or SOC, triple therapy. Any info
will help. I also have chance to get into abott trial and it is all oral also.
In making a decision about your treatment you may want to discuss with your doctor the actual condition of your liver in addition to the hepatitis infection as these are separate issues, as well as how you think you will be able to handle the possible/probable side effects from taking the drugs on the market. Having a support network in place and a back up work/career and temporary disability plan would also be helpful. Best to be prepared.
It all sounds so confusing when it comes to study trials. I will just do what my Dr thinks is best. I don't have the time or knowledge to compare different trials. Hopefully my Dr will make a good decision for me..
Experienced docs can make a lot of determinations from a physical exam and the labs at their disposal. If he wants you to treat, he may have a good reason that is based on your condition rather than what is out there. Nevertheless, one thing to keep in mind is that new oral drugs being developed are being developed as Omnibus drugs; that is, they will eventually deal with all types equally. Still, one has to be careful about choosing if a trial is what you want. These drugs are not all the same. Some are much more powerful than others and they have lower or higher barriers to resistance which necessitates combinations. There is some horse trading that goes on because one company may have a drug which needs a complimentary drug that they don't have. Not all companies can form these partnerships. Rescue treatments involving SOC are available if you fail but then you are taking a QUAD. It is dicey no matter how you cut the cake.
Summer:
That seems to be good advice from your doctor ..in regards to if you treat now then a biopsy may not be necessary.
Also good advice from nygirl,that if you are considering waiting to treat(especially if waiting another 5 years or so) a biopsy would certainly be recommend to know how you are doing currently in regards to your liver damage.
Good luck..and hope they get the G type figured out for you..
Will
You have to remember that the trials are really experiments and most of the new meds never make it to market. We have watched many very promising ones go down the tubes over the years and then waited something lik 7 years to get the telapravir to market. It's not a quick process.
If you have any intention on waitiing you need to have a biopsy done to see if you have time to wait or if your liver damage is too severe for that. I don't know how a doctor can make an educated decision without one, not at all. Viral load being high or low means nothing when it comes to amounts of liver damage.
Thanks for asking, stil no genotype. My GI Dr is haing me see a hepatologist at the end of Oct. But is doubtful that he will be able to find a genotype (they already talked abot me). So he said they will most likely treat me as genotype 1. I think its 48 weeks of treatment. One problem is that my insurance comp might not approve my treatment without a genotype. Thats where a trial might come in. One step at a time, just thinking ahead. I dont think I can do 48 weeks on these drugs. My life is very busy and I cant be down. When I heard of people talking about better drugs coming out with less sides and shorter treatment time, it makes me want to wait til then. My Dr wants me to do treatment now, and he says I dont need a biopsy. Thanks for listening..and asking about me :)
Summer, here is listing of the interferon-free trials if you are interested. http://hcvadvocate.org/hepatitis/hepC/HCVDrugs.html#IFfree
If I were in your shoes (and I have been) I would research the various trials very carefully and weigh the comments of forum members who have been and are in trials of various sorts. According to the researchers in my trial, the interferon free all oral treatments are a good 5 years away from market. It is good to remember that you are treatment naive only once. Use it wisely. But also helpful to remember that no matter which way you go, there is risk. Calculate carefully and pick your poison!
Hi Summer just for reference here is a link that shows all the ongoing studies as of last July ..
There are over 100 of them in total .. maybe 30-50% will actually become FDA approved ..
http://www.hcvdrugs.com/
Cheers
Summer...There are currently many HCV drug trial going on. They are experimenting with a number of different regimes. Some still with the use of Interferon and ribavirin in the mix and others without one or both of these.
The trials are currently still in mid stage development and the general consensus is that there will be more and different meds in the future..however when is what no -one knows with certainly yet.
How did the genotype go?
Will