Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 I was told today by my dr. that his next recommend for me (after being classified as non-resp. on combo) in six months start the Peg/ribivirin. would like input from anyone that has tried it. He also said Peg would be approved this Dec. but Peg/ribivirin would not be approved until next year. He wants me to get in a study that is six months Peg/combo and if non-resp then three and a half years of maintenance small dose interferon. This is what you commit to in order to get in the study. Don't know if anyone is interested in this info. or not. I asked how long the virus lives outside the body and he said not even a minute. He is with U.T Southwestern Medical in Dallas and they do lots of research. Conflicting info. on test, treatments, etc. has got me very confused about all of it. Who do you believe, or which Dr. do you believe is more appropriate. Good Health to All MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 >Hi marjorie.. I live in Indianapolis, facilitate a hep c support group here. The only doc I know of doing studies and compiling data on Peg/ribavirin is Dr. Bruce Bacon. he is in st. Louis, MO. Hope that helps. You could also call your Schering representative there and see if they can give you statistics. Glenna G. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dear Marjorie, I have a question about the study that your doctor wants to put you on. You say that it is six months of Peg/combo and if non-response then three and a half years of maintenance dose? What happens if you DO respond? How long will you stay on it then? As a previous non-responder don't you need to stay on for a longer time than 6 months? I'm a non-responder too, and my doctor is also talking about doing a peg when it comes out. I know that if I do respond I want to stay on for at least a year, maybe even longer. I liked the idea of the maintenance dose for so long a period. I would like to do something like that even if I do respond. Maybe not 3 1/2 years!! Also, which peg is being used in this study, the Schering or Roche? I did find the info on how long the virus can live outside the body interesting. I had asked Dr. Misra this a while back and he said up to 12 hours, depending on the room temperature. This is a current debate going on on another HepC list, and everyone has a different 'expert' opinion! Many are insisting it can live for days, weeks, even months. When I sent in what Dr. Misra said I got a testy reply back that the virus could live for 3 months, that was why it was so contagious!!!! I find that down-right silly. Everyone in our households would probably be infected, since most of us have had this sometimes for years without knowing it, and weren't too careful prior to finding out we have HCV. Common sense says it can't live very long outside the body, even IN the body the virus has a very short life span. Good luck with your decision. Claudine ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they are doing trials with PEG only for 3 year maintenance for nonresponders, after that, it'll be with riba. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they are doing trials with PEG only for 3 year maintenance for nonresponders, after that, it'll be with riba. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dear Marjorie, I think for a non-responder to only stay on any treatment for 6 months is asking for a relapse. After all, you've already shown you don't respond to interferon well. I liked the sound of the study until you got to this part! The other medication, could it be amantadine? I'd like to see a study on Peg, ribavirin, and amantadine, all together. I just read a letter today about all the genotype 2's and 3's that are suddenly relapsing, when everyone assumed they were going to be sustained responders, just because of their genotype. Supposedly the Mayo Clinic is going to start treating them for a full year too. Maybe 6 months is not long enough for anyone, and I just can't believe it would be long enough for a previous non-responder. This is the down side to studies, there is no flexibility, no room for individual treatment options. Good luck on making a decision, I know it will be a tough one for you. Are you in a position where you can wait a while? Claudine >From: " Marjorie Delese " <mrdelese@...> > >Claudine, the study on the Peg/ribivirin is six months on the combo, >if you respond that['s it, if you do not then 3 and 1/2 yrs of low >dose INf along with this they are testing Peg along with another drug >(don't remember the name starts with A----dine) right now they are >starting one with just Peg but you have to e off trmts 6 months >before starting another study.> ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dear Marjorie, I think for a non-responder to only stay on any treatment for 6 months is asking for a relapse. After all, you've already shown you don't respond to interferon well. I liked the sound of the study until you got to this part! The other medication, could it be amantadine? I'd like to see a study on Peg, ribavirin, and amantadine, all together. I just read a letter today about all the genotype 2's and 3's that are suddenly relapsing, when everyone assumed they were going to be sustained responders, just because of their genotype. Supposedly the Mayo Clinic is going to start treating them for a full year too. Maybe 6 months is not long enough for anyone, and I just can't believe it would be long enough for a previous non-responder. This is the down side to studies, there is no flexibility, no room for individual treatment options. Good luck on making a decision, I know it will be a tough one for you. Are you in a position where you can wait a while? Claudine >From: " Marjorie Delese " <mrdelese@...> > >Claudine, the study on the Peg/ribivirin is six months on the combo, >if you respond that['s it, if you do not then 3 and 1/2 yrs of low >dose INf along with this they are testing Peg along with another drug >(don't remember the name starts with A----dine) right now they are >starting one with just Peg but you have to e off trmts 6 months >before starting another study.> ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dr at U T Southwestern told me yesterday that trials using Peg/ribivirin are going on right now. Trials using Peg/ribivirin are starting this fall ; six months on trmt; non resp. will be three and a half yrs on small doses of INF. He also said they have numberous trial going on for Hep C. MD Re: Re: Peg > Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they > are doing trials with PEG only for 3 year maintenance for nonresponders, > after that, it'll be with riba. > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > > -------------------------------------------------------------------- ---- > Did you get the best price for these CDs and movies? > **************************************************** > 1/4738/0/_/619765/_/959822720/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dr at U T Southwestern told me yesterday that trials using Peg/ribivirin are going on right now. Trials using Peg/ribivirin are starting this fall ; six months on trmt; non resp. will be three and a half yrs on small doses of INF. He also said they have numberous trial going on for Hep C. MD Re: Re: Peg > Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they > are doing trials with PEG only for 3 year maintenance for nonresponders, > after that, it'll be with riba. > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > > -------------------------------------------------------------------- ---- > Did you get the best price for these CDs and movies? > **************************************************** > 1/4738/0/_/619765/_/959822720/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Marjorie thanks for the update.... My info came from Dr Lee but it was a few months ago right after Christmas... Unfortunately, i have normal liver enzymes and never done treatment so I didn't qualify for any of their trials oh well alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Marjorie thanks for the update.... My info came from Dr Lee but it was a few months ago right after Christmas... Unfortunately, i have normal liver enzymes and never done treatment so I didn't qualify for any of their trials oh well alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Claudine, the study on the Peg/ribivirin is six months on the combo, if you respond that['s it, if you do not then 3 and 1/2 yrs of low dose INf along with this they are testing Peg along with another drug (don't remember the name starts with A----dine) right now they are starting one with just Peg but you have to e off trmts 6 months before starting another study. I'm not sure what I'll do, just finished my second round of trmts the first was in 98. Take care, Marjorie Re: Re: Peg > Dear Marjorie, > I have a question about the study that your doctor wants to put you on. > You say that it is six months of Peg/combo and if non-response then three > and a half years of maintenance dose? What happens if you DO respond? How > long will you stay on it then? As a previous non-responder don't you need > to stay on for a longer time than 6 months? I'm a non-responder too, and my > doctor is also talking about doing a peg when it comes out. I know that if > I do respond I want to stay on for at least a year, maybe even longer. I > liked the idea of the maintenance dose for so long a period. I would like to > do something like that even if I do respond. Maybe not 3 1/2 years!! Also, > which peg is being used in this study, the Schering or Roche? > I did find the info on how long the virus can live outside the body > interesting. I had asked Dr. Misra this a while back and he said up to 12 > hours, depending on the room temperature. This is a current debate going on > on another HepC list, and everyone has a different 'expert' opinion! Many > are insisting it can live for days, weeks, even months. When I sent in what > Dr. Misra said I got a testy reply back that the virus could live for 3 > months, that was why it was so contagious!!!! I find that down-right > silly. Everyone in our households would probably be infected, since most of > us have had this sometimes for years without knowing it, and weren't too > careful prior to finding out we have HCV. Common sense says it can't live > very long outside the body, even IN the body the virus has a very short life > span. > Good luck with your decision. > Claudine > > ______________________________________________________________________ __ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > -------------------------------------------------------------------- ---- > Did you get the best price for these CDs and movies? > **************************************************** > 1/4738/0/_/619765/_/959821547/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Claudine, the study on the Peg/ribivirin is six months on the combo, if you respond that['s it, if you do not then 3 and 1/2 yrs of low dose INf along with this they are testing Peg along with another drug (don't remember the name starts with A----dine) right now they are starting one with just Peg but you have to e off trmts 6 months before starting another study. I'm not sure what I'll do, just finished my second round of trmts the first was in 98. Take care, Marjorie Re: Re: Peg > Dear Marjorie, > I have a question about the study that your doctor wants to put you on. > You say that it is six months of Peg/combo and if non-response then three > and a half years of maintenance dose? What happens if you DO respond? How > long will you stay on it then? As a previous non-responder don't you need > to stay on for a longer time than 6 months? I'm a non-responder too, and my > doctor is also talking about doing a peg when it comes out. I know that if > I do respond I want to stay on for at least a year, maybe even longer. I > liked the idea of the maintenance dose for so long a period. I would like to > do something like that even if I do respond. Maybe not 3 1/2 years!! Also, > which peg is being used in this study, the Schering or Roche? > I did find the info on how long the virus can live outside the body > interesting. I had asked Dr. Misra this a while back and he said up to 12 > hours, depending on the room temperature. This is a current debate going on > on another HepC list, and everyone has a different 'expert' opinion! Many > are insisting it can live for days, weeks, even months. When I sent in what > Dr. Misra said I got a testy reply back that the virus could live for 3 > months, that was why it was so contagious!!!! I find that down-right > silly. Everyone in our households would probably be infected, since most of > us have had this sometimes for years without knowing it, and weren't too > careful prior to finding out we have HCV. Common sense says it can't live > very long outside the body, even IN the body the virus has a very short life > span. > Good luck with your decision. > Claudine > > ______________________________________________________________________ __ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > -------------------------------------------------------------------- ---- > Did you get the best price for these CDs and movies? > **************************************************** > 1/4738/0/_/619765/_/959821547/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Pat, my info was from Dr. Malet (associate of Dr. Lee) have a girlfriend just finishing a study with Dr. Lee. This is her last week of nine months, she was in the High dose study, I don't know how she has made it through. Lost all her hair, bruises any time she bumbs herself slightly and says the pain just goes all through her bones. Take care, Marjorie Re: Re: Peg > Marjorie thanks for the update.... My info came from Dr Lee but it was a few > months ago right after Christmas... Unfortunately, i have normal liver > enzymes and never done treatment so I didn't qualify for any of their trials > oh well > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > > -------------------------------------------------------------------- ---- > 22,345,678 matches to your search term? > Inforocket.com is the fast way to the right answer - guaranteed. > 1/4521/0/_/619765/_/959828737/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Pat, my info was from Dr. Malet (associate of Dr. Lee) have a girlfriend just finishing a study with Dr. Lee. This is her last week of nine months, she was in the High dose study, I don't know how she has made it through. Lost all her hair, bruises any time she bumbs herself slightly and says the pain just goes all through her bones. Take care, Marjorie Re: Re: Peg > Marjorie thanks for the update.... My info came from Dr Lee but it was a few > months ago right after Christmas... Unfortunately, i have normal liver > enzymes and never done treatment so I didn't qualify for any of their trials > oh well > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > > -------------------------------------------------------------------- ---- > 22,345,678 matches to your search term? > Inforocket.com is the fast way to the right answer - guaranteed. > 1/4521/0/_/619765/_/959828737/ > -------------------------------------------------------------------- ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Could someone let me know about the trials and possibly their locations? I would appreciate it very much. Thank You, Connie --- alley/ <alleypat@...> wrote: > Yeah I'd like to hear more about the PEG too. Here > at UT Southwestern, they > are doing trials with PEG only for 3 year > maintenance for nonresponders, > after that, it'll be with riba. > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Could someone let me know about the trials and possibly their locations? I would appreciate it very much. Thank You, Connie --- alley/ <alleypat@...> wrote: > Yeah I'd like to hear more about the PEG too. Here > at UT Southwestern, they > are doing trials with PEG only for 3 year > maintenance for nonresponders, > after that, it'll be with riba. > alley/ > ICQ 12631861 > alleypat@... > http://www.flash.net/~alleypat > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Hello all: Can anyone explain why the Peg. treatment is going to work better then the regular high dose daily combo treatment? Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Hello all: Can anyone explain why the Peg. treatment is going to work better then the regular high dose daily combo treatment? Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear Les, The Peg will NOT work better than high dose daily interferon. In fact, I would rather do high dose daily combo treatment. The problem is that the current interferon is only FDA approved for 3 times weekly dosing, and many doctors are not willing to prescribe 'off label', which daily dosing is. With all the stupid law suits that get filed against them you can hardly blame them. The pegylated interferons are the drug companies answer to the fact that keeping a constant, sustained pressure on the virus works much better than giving the virus a break between injections on the 3 times a week dosing. I think they would rather come out with a NEW IMPROVED interferon rather than admit that they made a mistake in the original 3 times a week dosing. The only reason interferon for HCV was studied at 3 times a week dosing is because that was already how it was used when treating cancer. What works for cancer just doesn't work well at all for HCV, especially in genotypes 1 and 4, and 1 is the most common genotype in the US! At only one injection a week the Schering version of peg interferon will probably not work nearly as well as daily dosing of regular interferon would. The half-life of their version is just not long enough, and will not last a week in your body. The Roche brand has a longer half-life, which is better, and will last almost a full week, but not quite! The other up-side to the pegylateds is that it is only one injection a week, and the side effects are also supposed to be easier to handle than 3 times a week dosing, since there is a constant level in your blood, and not the up's and down's of 3X weekly dosing. Of course, daily dosing addresses this issue also. To sum this up, the pegylateds will work much better than standard, 3 times a week dosing, but not as well as daily dosing of regular interferon. At least, this is my much researched belief. Claudine >From: LEST2001@... > Can anyone explain why the Peg. treatment is going to work better then >the regular high dose daily combo treatment? >Les ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear Les, The Peg will NOT work better than high dose daily interferon. In fact, I would rather do high dose daily combo treatment. The problem is that the current interferon is only FDA approved for 3 times weekly dosing, and many doctors are not willing to prescribe 'off label', which daily dosing is. With all the stupid law suits that get filed against them you can hardly blame them. The pegylated interferons are the drug companies answer to the fact that keeping a constant, sustained pressure on the virus works much better than giving the virus a break between injections on the 3 times a week dosing. I think they would rather come out with a NEW IMPROVED interferon rather than admit that they made a mistake in the original 3 times a week dosing. The only reason interferon for HCV was studied at 3 times a week dosing is because that was already how it was used when treating cancer. What works for cancer just doesn't work well at all for HCV, especially in genotypes 1 and 4, and 1 is the most common genotype in the US! At only one injection a week the Schering version of peg interferon will probably not work nearly as well as daily dosing of regular interferon would. The half-life of their version is just not long enough, and will not last a week in your body. The Roche brand has a longer half-life, which is better, and will last almost a full week, but not quite! The other up-side to the pegylateds is that it is only one injection a week, and the side effects are also supposed to be easier to handle than 3 times a week dosing, since there is a constant level in your blood, and not the up's and down's of 3X weekly dosing. Of course, daily dosing addresses this issue also. To sum this up, the pegylateds will work much better than standard, 3 times a week dosing, but not as well as daily dosing of regular interferon. At least, this is my much researched belief. Claudine >From: LEST2001@... > Can anyone explain why the Peg. treatment is going to work better then >the regular high dose daily combo treatment? >Les ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear , Thanks for the info. Is this the study where you are randomly assigned to receive one of the 4 combinations, but have no say-so on which you get? I wish the study included more than just relapsers. I'm eager to hear the results! Claudine >From: " gorski " <gorski@...> > >There is a study in progress with the above three. The one study I know of >has four arms as follows: > >Randomized PEG study (ROCHE) with four arms >for relapsers: > >1) PEG plus Ribavirin >2) PEG plus Amantidine >3) PEG plus Ribaviron & Amantidine >4) PEG plus Cellcept > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear , Thanks for the info. Is this the study where you are randomly assigned to receive one of the 4 combinations, but have no say-so on which you get? I wish the study included more than just relapsers. I'm eager to hear the results! Claudine >From: " gorski " <gorski@...> > >There is a study in progress with the above three. The one study I know of >has four arms as follows: > >Randomized PEG study (ROCHE) with four arms >for relapsers: > >1) PEG plus Ribavirin >2) PEG plus Amantidine >3) PEG plus Ribaviron & Amantidine >4) PEG plus Cellcept > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear , Thanks for the info. Is this the study where you are randomly assigned to receive one of the 4 combinations, but have no say-so on which you get? I wish the study included more than just relapsers. I'm eager to hear the results! Claudine >From: " gorski " <gorski@...> > >There is a study in progress with the above three. The one study I know of >has four arms as follows: > >Randomized PEG study (ROCHE) with four arms >for relapsers: > >1) PEG plus Ribavirin >2) PEG plus Amantidine >3) PEG plus Ribaviron & Amantidine >4) PEG plus Cellcept > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear , Thanks for the info. Is this the study where you are randomly assigned to receive one of the 4 combinations, but have no say-so on which you get? I wish the study included more than just relapsers. I'm eager to hear the results! Claudine >From: " gorski " <gorski@...> > >There is a study in progress with the above three. The one study I know of >has four arms as follows: > >Randomized PEG study (ROCHE) with four arms >for relapsers: > >1) PEG plus Ribavirin >2) PEG plus Amantidine >3) PEG plus Ribaviron & Amantidine >4) PEG plus Cellcept > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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