Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 just got an e-mail from another liver doc they re doing a clinical trial with pills only without interferon, only for people who never treated before.On Jan 23, 2011, at 10:03 AM, Theresa Gottlieb wrote: Butch,I completely understand. BUT it sounds like you couldn't have stuck it out on the first go round... sometimes treatment as it stands is just too intense. As for the new protocols.. they are still in the laboratories with the scientists. I know that Vertex is working on one such treatment and they are approaching it from several different angles, all of which lead to no Interferon and at least one that leads to no Interferon and no Ribavirin. At this stage, they are very close lipped about what they are doing as they don't want their ideas stolen. They are in the research and development stage and not yet in any clinical setting. Vertex is a privately owned drug company.. they are not Big Pharm. They are trying to eradicate hep c in our lifetime. Vertex works on drugs that matter. No fluff stuff for them. I have met the doctors, the scientists and the main group that is Vertex and this team is DEDICATED. I have no doubt in my mind that these people will fix this problem so that everyone who has hep c can treat and clear. Yep, they are 3 to 5 years away from market but they are working hard on it... Hang in there Butch and keep the faith... It's gonna happen.Hugs,TeriOn Sun, Jan 23, 2011 at 9:53 AM, butchholland2002 <butchholland2002@...> wrote: Hey thanks for info. Heck I have been waiting a couple a decades, 3 or 5 years should not be that hard. I believe if it had not been for what the interferon did to my bones I could have cleared. I should have stuck it out the first go round...That damn hindsight gets me every time LOL. Does anyone have any links or info on the new non-interferon stuff in development.My liver doc is pushing treating and would be nice to have something to show him. If I just had to deal with the normal side effect's horrible as they are I would be on interferon right now. I have flipped boat's,cars and motorcycles at high rates of speed. Been on ships in hurricanes where the whole ship would go underwater in huge waves. Hit a sailboat mast while para sailing and fell down perfectly good mountains and never was even close to scared...It was fun. The only things that have scared me is my first wife and becoming a cripple. If I was given a choice of re-marrying my first ex or becoming a cripple I would be saying I DO in a heartbeat. That's how bad I don't want to become fully crippled and one injection of interferon would most likely do that. The crazy thing is I am seriously thinking about doing it again if there is even a small chance of getting my life back. If I can avoid that by just waiting out 3 or so years hey ho lets go. Any info on this would be greatly appreciated. I Thank all you amazing folks for being here to listen and for helping me. Hope everyone has a fantastic year... Butch > > Telaprevir is not Interferon however it is used in conjunction with > Interferon. The powers that be are working on a treatment regimen that will > eliminate the need for Interferon but that is still 3 to 5 years away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 REALLY! That's pretty awesome then that it's closer than we think. I know there is talk about trying the treatment with Ribavirin and the protease inhibitors but they are just trying to see if it will work... not sure if I'd want to be a guinea pig on something that might be a waste of time. On Sun, Jan 23, 2011 at 4:44 PM, Barrett <barrjohnm@...> wrote: just got an e-mail from another liver doc they re doing a clinical trial with pills only without interferon, only for people who never treated before.On Jan 23, 2011, at 10:03 AM, Theresa Gottlieb wrote: Butch,I completely understand. BUT it sounds like you couldn't have stuck it out on the first go round... sometimes treatment as it stands is just too intense. As for the new protocols.. they are still in the laboratories with the scientists. I know that Vertex is working on one such treatment and they are approaching it from several different angles, all of which lead to no Interferon and at least one that leads to no Interferon and no Ribavirin. At this stage, they are very close lipped about what they are doing as they don't want their ideas stolen. They are in the research and development stage and not yet in any clinical setting. Vertex is a privately owned drug company.. they are not Big Pharm. They are trying to eradicate hep c in our lifetime. Vertex works on drugs that matter. No fluff stuff for them. I have met the doctors, the scientists and the main group that is Vertex and this team is DEDICATED. I have no doubt in my mind that these people will fix this problem so that everyone who has hep c can treat and clear. Yep, they are 3 to 5 years away from market but they are working hard on it... Hang in there Butch and keep the faith... It's gonna happen.Hugs,TeriOn Sun, Jan 23, 2011 at 9:53 AM, butchholland2002 <butchholland2002@...> wrote: Hey thanks for info. Heck I have been waiting a couple a decades, 3 or 5 years should not be that hard. I believe if it had not been for what the interferon did to my bones I could have cleared. I should have stuck it out the first go round...That damn hindsight gets me every time LOL. Does anyone have any links or info on the new non-interferon stuff in development.My liver doc is pushing treating and would be nice to have something to show him. If I just had to deal with the normal side effect's horrible as they are I would be on interferon right now. I have flipped boat's,cars and motorcycles at high rates of speed. Been on ships in hurricanes where the whole ship would go underwater in huge waves. Hit a sailboat mast while para sailing and fell down perfectly good mountains and never was even close to scared...It was fun. The only things that have scared me is my first wife and becoming a cripple. If I was given a choice of re-marrying my first ex or becoming a cripple I would be saying I DO in a heartbeat. That's how bad I don't want to become fully crippled and one injection of interferon would most likely do that. The crazy thing is I am seriously thinking about doing it again if there is even a small chance of getting my life back. If I can avoid that by just waiting out 3 or so years hey ho lets go. Any info on this would be greatly appreciated. I Thank all you amazing folks for being here to listen and for helping me. Hope everyone has a fantastic year... Butch > > Telaprevir is not Interferon however it is used in conjunction with > Interferon. The powers that be are working on a treatment regimen that will > eliminate the need for Interferon but that is still 3 to 5 years away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 I see. I guess they would rather do it this way, I don't like this as there are less docs to just treat people.On Jan 23, 2011, at 6:19 PM, Theresa Gottlieb wrote: Many doctors are going into clinical trials vs treating patients because the stress is less and the insurance is cheaper. Plus they don't have to deal with billing patients for services they get paid by the drug companies. On Sun, Jan 23, 2011 at 5:02 PM, Barrett <barrjohnm@...> wrote: Hi Teri,Yeah, I did not hear much, just a email from this doctor I know from Queens, he is an infection disease doctor, have not heard of them treating Hep C. I met him at Queens, and contacted him a few days ago to complain about the liver center and asked him if you would see me temporarily for a second opinion and he told me he was starting this trial in a few months. I don't know about the trial just that it is pills only no interferon. He also told me to inform the State Health Department about my issue.I thought it was strange that he no longer treats, just does clinical trials, I hope this is not a trend. Hugs, nyOn Jan 23, 2011, at 12:49 PM, Theresa Gottlieb wrote: REALLY! That's pretty awesome then that it's closer than we think. I know there is talk about trying the treatment with Ribavirin and the protease inhibitors but they are just trying to see if it will work... not sure if I'd want to be a guinea pig on something that might be a waste of time. On Sun, Jan 23, 2011 at 4:44 PM, Barrett <barrjohnm@...> wrote: just got an e-mail from another liver doc they re doing a clinical trial with pills only without interferon, only for people who never treated before.On Jan 23, 2011, at 10:03 AM, Theresa Gottlieb wrote: Butch,I completely understand. BUT it sounds like you couldn't have stuck it out on the first go round... sometimes treatment as it stands is just too intense. As for the new protocols.. they are still in the laboratories with the scientists. I know that Vertex is working on one such treatment and they are approaching it from several different angles, all of which lead to no Interferon and at least one that leads to no Interferon and no Ribavirin. At this stage, they are very close lipped about what they are doing as they don't want their ideas stolen. They are in the research and development stage and not yet in any clinical setting. Vertex is a privately owned drug company.. they are not Big Pharm. They are trying to eradicate hep c in our lifetime. Vertex works on drugs that matter. No fluff stuff for them. I have met the doctors, the scientists and the main group that is Vertex and this team is DEDICATED. I have no doubt in my mind that these people will fix this problem so that everyone who has hep c can treat and clear. Yep, they are 3 to 5 years away from market but they are working hard on it... Hang in there Butch and keep the faith... It's gonna happen.Hugs,TeriOn Sun, Jan 23, 2011 at 9:53 AM, butchholland2002 <butchholland2002@...> wrote: Hey thanks for info. Heck I have been waiting a couple a decades, 3 or 5 years should not be that hard. I believe if it had not been for what the interferon did to my bones I could have cleared. I should have stuck it out the first go round...That damn hindsight gets me every time LOL. Does anyone have any links or info on the new non-interferon stuff in development.My liver doc is pushing treating and would be nice to have something to show him. If I just had to deal with the normal side effect's horrible as they are I would be on interferon right now. I have flipped boat's,cars and motorcycles at high rates of speed. Been on ships in hurricanes where the whole ship would go underwater in huge waves. Hit a sailboat mast while para sailing and fell down perfectly good mountains and never was even close to scared...It was fun. The only things that have scared me is my first wife and becoming a cripple. If I was given a choice of re-marrying my first ex or becoming a cripple I would be saying I DO in a heartbeat. That's how bad I don't want to become fully crippled and one injection of interferon would most likely do that. The crazy thing is I am seriously thinking about doing it again if there is even a small chance of getting my life back. If I can avoid that by just waiting out 3 or so years hey ho lets go. Any info on this would be greatly appreciated. I Thank all you amazing folks for being here to listen and for helping me. Hope everyone has a fantastic year... Butch > > Telaprevir is not Interferon however it is used in conjunction with > Interferon. The powers that be are working on a treatment regimen that will > eliminate the need for Interferon but that is still 3 to 5 years away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 HI Gloria,Yes I have to agree even though I went through hell on mine, I am thankful so many people do the clinical trials, without them I guess there would be no new/better drugs coming!Yes the clinical trials are free, in Hawaii(maybe other places too) they are pushing poor people into them so the state health insurance does not have to pay! This is why I did this trial, I was pushed into it saying I had no choice, and if I did not do it I would most likely be dead in 3 years, such lies!! I met people on facebbook in my situation, some even worse 10 years later they are still alive.I would advise anybody doing a clinical trial is to do your homework,but when you are in that situation you are usually in no shape to.Hugs,nyOn Jan 23, 2011, at 7:50 PM, Gloria wrote: Well, nyFirst of all, thank heavens there are folks that are willing to do the clinical's. If I was still out there worrying about the cirrhosis catching up to me, I would have gone for a clinical with no interferon in a second. Also, remember that they are free to the patient. I know that a lot of folks in the States have to worry about their medical insurance, so free is always a great way to go.The only time I would take a few minutes or days to decide, is if it was a Phase I. To me that takes more courage than I think I have.Gloria Hi Teri,Yeah, I did not hear much, just a email from this doctor I know from Queens, he is an infection disease doctor, have not heard of them treating Hep C. I met him at Queens, and contacted him a few days ago to complain about the liver center and asked him if you would see me temporarily for a second opinion and he told me he was starting this trial in a few months. I don't know about the trial just that it is pills only no interferon.He also told me to inform the State Health Department about my issue.I thought it was strange that he no longer treats, just does clinical trials, I hope this is not a trend.Hugs, nyOn Jan 23, 2011, at 12:49 PM, Theresa Gottlieb wrote: REALLY! That's pretty awesome then that it's closer than we think. I know there is talk about trying the treatment with Ribavirin and the protease inhibitors but they are just trying to see if it will work... not sure if I'd want to be a guinea pig on something that might be a waste of time. On Sun, Jan 23, 2011 at 4:44 PM, Barrett <barrjohnm@...> wrote: just got an e-mail from another liver doc they re doing a clinical trial with pills only without interferon, only for people who never treated before.On Jan 23, 2011, at 10:03 AM, Theresa Gottlieb wrote: Butch,I completely understand. BUT it sounds like you couldn't have stuck it out on the first go round... sometimes treatment as it stands is just too intense. As for the new protocols.. they are still in the laboratories with the scientists. I know that Vertex is working on one such treatment and they are approaching it from several different angles, all of which lead to no Interferon and at least one that leads to no Interferon and no Ribavirin. At this stage, they are very close lipped about what they are doing as they don't want their ideas stolen. They are in the research and development stage and not yet in any clinical setting. Vertex is a privately owned drug company.. they are not Big Pharm. They are trying to eradicate hep c in our lifetime. Vertex works on drugs that matter. No fluff stuff for them. I have met the doctors, the scientists and the main group that is Vertex and this team is DEDICATED. I have no doubt in my mind that these people will fix this problem so that everyone who has hep c can treat and clear. Yep, they are 3 to 5 years away from market but they are working hard on it... Hang in there Butch and keep the faith... It's gonna happen.Hugs,TeriOn Sun, Jan 23, 2011 at 9:53 AM, butchholland2002 <butchholland2002@...> wrote: Hey thanks for info. Heck I have been waiting a couple a decades, 3 or 5 years should not be that hard. I believe if it had not been for what the interferon did to my bones I could have cleared. I should have stuck it out the first go round...That damn hindsight gets me every time LOL. Does anyone have any links or info on the new non-interferon stuff in development.My liver doc is pushing treating and would be nice to have something to show him. If I just had to deal with the normal side effect's horrible as they are I would be on interferon right now. I have flipped boat's,cars and motorcycles at high rates of speed. Been on ships in hurricanes where the whole ship would go underwater in huge waves. Hit a sailboat mast while para sailing and fell down perfectly good mountains and never was even close to scared...It was fun. The only things that have scared me is my first wife and becoming a cripple. If I was given a choice of re-marrying my first ex or becoming a cripple I would be saying I DO in a heartbeat. That's how bad I don't want to become fully crippled and one injection of interferon would most likely do that. The crazy thing is I am seriously thinking about doing it again if there is even a small chance of getting my life back. If I can avoid that by just waiting out 3 or so years hey ho lets go. Any info on this would be greatly appreciated. I Thank all you amazing folks for being here to listen and for helping me. Hope everyone has a fantastic year... Butch > > Telaprevir is not Interferon however it is used in conjunction with > Interferon. The powers that be are working on a treatment regimen that will > eliminate the need for Interferon but that is still 3 to 5 years away. Quote Link to comment Share on other sites More sharing options...
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