HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

[Guest guest]

Yes, but then he did list the trial number so maybe Liz can find out more about this trial,, I think that sometimes , when writing something, we think we have put everything we wanted to say into the post and yet have left some part out so that in the end ppl do not understand exactly what you are trying to say... Im working on trying to get it all straightened out,, off the forum so that I can hopefully understand exactly what Ron is trying to say so that I can explain it here,, I DO believe that he is trying to help us and to warn us about some things and I BELIEVE that ALL INPUT is important... Im sorry you

feel dead sometimes,, I do too,, in fact, its after 2 pm and Im still in bed,, my pain med is starting to work so Ill be able to get up soon,, grrrrr,, I hate what tx did to me,,, but at least the hep is in remission,,, thats what I have to remind myself every day! Dorothy wrote: That’s why I specifically asked him what she was taking and he replied interferon alfa-2b w/ribavirin Sometimes I feel like I’m already dead…..LOL It’s not easy, that’s for sure and unfortunately, when you get to the point where you HAVE to treat, it’s that much harder. My neuropathy and RA have been really giving me a hard time the last few days. I was barely able to get out of bed this morning till I took 4 pain pills. And when I could get out of bed, I had those damn 2 riba pills to look forward to with breakfast!! I’m looking forward to March……the end of tx for me and the beginning of spring! From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 11:02 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING

DROPPED!!!!!!!!! Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,, Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were

in a trial study and which one etc, you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but its good to put out all info,, so that ppl can make an informed decision about treatment,, I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,, Dorothy <dorvoptonline (DOT) net> wrote: I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent. He refers to it as a “treatment trial” and I don’t believe that the interferon/riba is considered a “trial,” but maybe I’m wrong. God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime. I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want it to frighten someone who may need tx and who could potentially benefit from it. Just my 2 cents………Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the

treatment alone can and does kill some patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,, just my 2 cents Dorothy <dorvoptonline (DOT) net> wrote: What “shots” and what “pills” has she been taking?? From:

Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51 PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that

are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks. Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know

you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on. I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair,

oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like. R Never miss a thing. Make Yahoo your homepage.

Jackie Jackie Jackie

[Guest guest]

Yes, but then he did list the trial number so maybe Liz can find out more about this trial,, I think that sometimes , when writing something, we think we have put everything we wanted to say into the post and yet have left some part out so that in the end ppl do not understand exactly what you are trying to say... Im working on trying to get it all straightened out,, off the forum so that I can hopefully understand exactly what Ron is trying to say so that I can explain it here,, I DO believe that he is trying to help us and to warn us about some things and I BELIEVE that ALL INPUT is important... Im sorry you

feel dead sometimes,, I do too,, in fact, its after 2 pm and Im still in bed,, my pain med is starting to work so Ill be able to get up soon,, grrrrr,, I hate what tx did to me,,, but at least the hep is in remission,,, thats what I have to remind myself every day! Dorothy wrote: That’s why I specifically asked him what she was taking and he replied interferon alfa-2b w/ribavirin Sometimes I feel like I’m already dead…..LOL It’s not easy, that’s for sure and unfortunately, when you get to the point where you HAVE to treat, it’s that much harder. My neuropathy and RA have been really giving me a hard time the last few days. I was barely able to get out of bed this morning till I took 4 pain pills. And when I could get out of bed, I had those damn 2 riba pills to look forward to with breakfast!! I’m looking forward to March……the end of tx for me and the beginning of spring! From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 11:02 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING

DROPPED!!!!!!!!! Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,, Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were

in a trial study and which one etc, you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but its good to put out all info,, so that ppl can make an informed decision about treatment,, I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,, Dorothy <dorvoptonline (DOT) net> wrote: I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent. He refers to it as a “treatment trial” and I don’t believe that the interferon/riba is considered a “trial,” but maybe I’m wrong. God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime. I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want it to frighten someone who may need tx and who could potentially benefit from it. Just my 2 cents………Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the

treatment alone can and does kill some patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,, just my 2 cents Dorothy <dorvoptonline (DOT) net> wrote: What “shots” and what “pills” has she been taking?? From:

Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51 PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that

are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks. Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know

you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on. I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair,

oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like. R Never miss a thing. Make Yahoo your homepage.

Jackie Jackie Jackie

[Guest guest]

I will check it out

RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

Liz, can you check this out? Can you find out what this is? thanks,, I think what Ron is trying to tell is is not coming out in the way that he intends and lots of us are confused about what treatment she is on and if its a study.. so if you can find out for us, it'd be helpful,,

thanks

jax

MEKA GRANADOS <mekagranados> wrote:

hg51008-g1060 is the program numberJackie on <redjaxjm> wrote:

Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,,

Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were in a trial study and which one etc,

you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but its good to put out all info,, so that ppl can make an informed decision about treatment,,

I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,,

Dorothy <dorvoptonline (DOT) net> wrote:

I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent.

He refers to it as a “treatment trial” and I don’t believe that the interferon/riba is considered a “trial,” but maybe I’m wrong.

God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime.

I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want it to frighten someone who may need tx and who could potentially benefit from it.

Just my 2 cents………Dorothy

From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the treatment alone can and does kill some patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,,

just my 2 cents

Dorothy <dorvoptonline (DOT) net> wrote:

What “shots” and what “pills” has she been taking??

From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51 PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks.

Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on.

I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair, oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like.

R

Never miss a thing. Make Yahoo your homepage.

Jackie

Jackie

Never miss a thing. Make Yahoo your homepage. Jackie

[Guest guest]

There is no trial out there with the program numbers hg51008-g1060 and I checked the goverment clinical site and fda site

RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

Liz, can you check this out? Can you find out what this is? thanks,, I think what Ron is trying to tell is is not coming out in the way that he intends and lots of us are confused about what treatment she is on and if its a study.. so if you can find out for us, it'd be helpful,,

thanks

jax

MEKA GRANADOS <mekagranados> wrote:

hg51008-g1060 is the program numberJackie on <redjaxjm> wrote:

Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,,

Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were in a trial study and which one etc,

you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but its good to put out all info,, so that ppl can make an informed decision about treatment,,

I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,,

Dorothy <dorvoptonline (DOT) net> wrote:

I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent.

He refers to it as a “treatment trial” and I don’t believe that the interferon/riba is considered a “trial,” but maybe I’m wrong.

God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime.

I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want it to frighten someone who may need tx and who could potentially benefit from it.

Just my 2 cents………Dorothy

From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the treatment alone can and does kill some patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,,

just my 2 cents

Dorothy <dorvoptonline (DOT) net> wrote:

What “shots” and what “pills” has she been taking??

From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51 PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!!

I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks.

Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on.

I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair, oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like.

R

Never miss a thing. Make Yahoo your homepage.

Jackie

Jackie

Never miss a thing. Make Yahoo your homepage. Jackie

[Guest guest]

hmm,, well maybe he got the numbers wrong,, thanks for looking tho,, elizabethnv1 wrote: There is no trial out there with the program numbers hg51008-g1060 and I checked the goverment clinical site and fda site RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Liz, can you check this out? Can you find out what this is? thanks,, I think what Ron is trying to tell is is not coming out in the way that he intends and lots of us are confused about what treatment she is on and if its a study.. so if you can find out for us, it'd be helpful,, thanks jax MEKA GRANADOS <mekagranados> wrote: hg51008-g1060 is the program numberJackie on <redjaxjm> wrote: Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,, Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were in a trial study and which one etc, you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but

its good to put out all info,, so that ppl can make an informed decision about treatment,, I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,, Dorothy <dorvoptonline (DOT) net> wrote: I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems

somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent. He refers to it as a “treatment trial” and I don’t believe that the interferon/riba is considered a “trial,” but maybe I’m wrong. God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being

able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime. I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want

it to frighten someone who may need tx and who could potentially benefit from it. Just my 2 cents………Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the treatment alone can and does kill some

patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,, just my 2 cents Dorothy <dorvoptonline (DOT) net> wrote: What “shots” and what “pills” has she been taking?? From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51

PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in

the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks. Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that

everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on. I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair, oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like. R Never miss a thing. Make Yahoo your homepage. Jackie Jackie Never miss a thing. Make Yahoo your homepage. Jackie Jackie

[Guest guest]

Hmmmm, Thanks for the info Liz Love Janetelizabethnv1 wrote: There is no trial out there with the program numbers hg51008-g1060 and I checked the goverment clinical site and fda site RE: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Liz, can you check this out? Can you find out what this is? thanks,, I think what Ron is trying to tell is is not coming out in the way that he intends and lots of us are confused about what treatment she is on

and if its a study.. so if you can find out for us, it'd be helpful,, thanks jax MEKA GRANADOS <mekagranados> wrote: hg51008-g1060 is the program numberJackie on <redjaxjm> wrote: Im not sure if this is a trial or not but I would be thinking it was because they will not just stop treating everyone with Peg and Riba,, it just wont happen,, Im hoping that they will come along and tell us more about what exactly this person's wife is taking and if they were in a trial study and which one etc, you are right,, it might scare someone who is new and not understanding the full impact of the treatment,, but its good to put out all info,, so that ppl can make an informed decision about treatment,, I was like you too in that I had to treat,, so I had to risk the sides,, If I hadnt, I'd probably be on a tp list or be dead by now,, Dorothy <dorvoptonline (DOT) net> wrote: I agree that there are certainly a lot of sides that hopefully, most of us will never experience. What got me was that this gentleman referred to an entire program that was being “dismantled” and perhaps being put back into animal testing……this seems somewhat extreme to me and obviously, something that the big drug companies would fight to their last breath to prevent. He refers to it as a “treatment trial” and I don’t believe that the

interferon/riba is considered a “trial,” but maybe I’m wrong. God knows that if we read the fine print on any drug package insert, we wouldn’t take it. And yes, some people have the luxury of being able to wait and hope for something better to come along. I’ve had hepatitis for decades and wouldn’t be treating today if I didn’t think it was absolutely necessary in my case. It’s a personal decision that each of us has to weigh and I also agree that the likelihood of something better won’t happen in my lifetime. I just thought that this posting may have been an extreme reaction by someone who cares about a person who may very well have had serious problems. He mentions insurance companies dropping people on this particular treatment. That I also find hard to believe as many of us are having this very tx funded by the insurance companies. I don’t want it to frighten someone who may need tx and who could potentially benefit from it. Just my 2 cents………Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of Jackie onSent: Wednesday, December 19, 2007 10:00 PMTo: Hepatitis_C_Central Subject: RE:

HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! Well I think they DID know about all the side effects from INF and Riba,, but most ppl do not have the exteme sides that can happen as this lady did.. its sad ,, but if you read the insert into each package of Riba and INF, read all the small print, you will see that this combo CAN and DOES cause permanent side effects.. unfortunately this is

all there is at this time,,, and most new products will also be using Peg and Riba because the drug companies have spent sooooo much money on the research and they know that for at least 50% of those treating, it does work, so do not expect anything free of peg and riba to be available anytime soon.. and you are right, we ARE lab rats,, and some of us will be permanently damaged from this treatment,, thats why I ALWAYS say that NOT EVERYONE SHOULD treat,, the treatment alone can and does kill some patients..it IS a serious decision to make,, and thats why I say that if you have little to no damage, maybe its a wise decision to wait for something else to come out that wont have this combo involved,, just my 2 cents Dorothy <dorvoptonline (DOT) net> wrote: What “shots” and what “pills” has she been taking?? From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOSSent: Wednesday, December 19, 2007 1:51 PMTo: Hep_C_Support ; hepatitis_c_central ; HepatitisCSupportGroupForDummies Subject: HEADS UP ON TREATMENT PROGRAM BEING DROPPED!!!!!!!!! I was on group about 6 months ago due to my girlfriend being starting the treatments. It was one big bad trip with side effects that are not on the books. Now we just got a call saying everyone on the trial needs to get a lung scan as they are having problems that may be life threatening, that the trial may be pulled all together and put back on animals. Yes this is true, her in TX with one of the top liver Dr's in the world. My girlfriend has had lung/breathing problems caused by the drugs building a film over her air sacks in her lungs, lucky she went to her own Dr's to check it constantly, however now they are saying that even he didn't know the extent of damage, her thyroid is shot from it also, the rest of her life, her eyes are going bad, and her white blood count sucks. Another heads up, the gal at the Dr office was telling us that she deals with all the insurance stuff, and that most insurance companies will drop you if they know you are on this treatment trial as now one knows what the after effects can be, and as we are now seeing they are bad. My gal lost her husband to hep c and saw it happen, she said she would rather go with the hep c than what the treatments have done to hurt her the rest of her life. I suggest that everyone check these things out them selves. I have horror stories of 5 1/2 months of all kinds of "gee we never saw that before" now everyone is popping up with the same problems, they said there were national problems that's why she got called today to have lung cat scan TOMORROW!!!!! Check with your DR, she was on 1200 on the injections and 6 pills a day. I swear you need to know what the heck is going on. I will spare you all the horror stories, I can tell you this tho, she has lost almost all of her hair, oh gee we know it comes out at first is what the DR said, now it's "oh shit we never knew" back to the lab rats for the drug it looks like. R Never miss a thing. Make Yahoo your homepage. Jackie Jackie Never miss a thing. Make Yahoo your homepage. Jackie When night falls on the earth,the sea from east to west likes twinkling bright with shining beams from beacons high which flash afar a friendly light. Helen Hunt (1830-1885)

[Guest guest]

They should switch her to pegulated interferon w/ribo. I had really serious side effects with the old alfa 2b but the peg hasn't been bad at all. Steve B..

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