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

[Guest guest]

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 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

[Guest guest]

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 on

Sent: Wednesday, December 19, 2007

10:00 PM

To:

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 GRANADOS

Sent: Wednesday, December 19, 2007

1:51 PM

To: 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

[Guest guest]

I think you need to read between the lines

on everything. And you have to understand that this tx has potentially

lifelong side effects…….that is not being disputed. Keep reading

and asking questions and do what is best for you.

I’m glad you decided to wait till

after the holidays. It will give you a chance to get a bit more comfortable

with the whole thing. I hope you felt good about your doctor since that

relationship is important.

Dorothy

From: Hepatitis_C_Central

[mailto:Hepatitis_C_Central ] On

Behalf Of joyceann silva

Sent: Wednesday, December 19, 2007

9:26 PM

To:

Hepatitis_C_Central

Subject: RE:

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

is this

for real ? im with you, i didnt start it yet , seen my doc today agreed to wait

after the holidays, so im gonna go right ahead with my plans,,,,,hi dorothy,,

Dorothy <dorvoptonline (DOT) net>

wrote:

In the UNITED STATES?? Seems odd

since this is the tx plan I’m guessing we’re all on.

From: Hepatitis_C_Central

[mailto:Hepatitis_C_Central ] On Behalf Of MEKA GRANADOS

Sent: Wednesday, December 19, 2007

6:26 PM

To: Hepatitis_C_Central

Subject: Re:

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

interferon alfa-2b w/ribavirin

Sonage

wrote:

What Treatment Program Is This?

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.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.

[Guest guest]

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 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

[Guest guest]

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 on

Sent: Wednesday, December 19, 2007

11:02 PM

To:

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 on

Sent: Wednesday, December 19, 2007

10:00 PM

To: 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 GRANADOS

Sent: Wednesday, December 19, 2007

1:51 PM

To: 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