genotype 1b response to tx 
Author Message
 genotype 1b response to tx

I'm curious- anyone out there type 1b and a responder to treatment? Found
out today I'm 1b and load of 2.55 mil. I'd like to hear about your
experiences. After biopsy I'm due to go into a study and do daily combo.

Thanx

Anchorage HCV guy



Mon, 29 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
Many people respond regardless of genotype.  Very
few stay that way after quitting chemo, regardless
of genotype.

Nan

Quote:

> I'm curious- anyone out there type 1b and a responder to treatment? Found
> out today I'm 1b and load of 2.55 mil. I'd like to hear about your
> experiences. After biopsy I'm due to go into a study and do daily combo.

> Thanx

> Anchorage HCV guy



Tue, 30 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
Aloha,

I lived in Anchorage for 1 year back in 1969 - I loved that place!! Many
fond memories (I lived in Bootlegger's Cove, on Scenic Way Drive), Cook
inlet.

Anyway - I just wanted to say that if you have made this decision to
take this treatment, having informed yourself fully, then I wish you
much success, few side effects, and a lasting remission.

I'm type 1b, never taken treatment, diagnosed in 1990, I use TCM.

Leola <~~~ in sunny Hawaii (at the moment it's dark, nightime yanno

~~  "For every minute you are angry, you lose sixty seconds of
happiness.  ~~
                       - Ralph Waldo Emerson

Quote:

> I'm curious- anyone out there type 1b and a responder to treatment? Found
> out today I'm 1b and load of 2.55 mil. I'd like to hear about your
> experiences. After biopsy I'm due to go into a study and do daily combo.

> Thanx

> Anchorage HCV guy



Tue, 30 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
Bullshit!

Have a nice day :)

Ken



Quote:
>Many people respond regardless of genotype.  Very
>few stay that way after quitting chemo, regardless
>of genotype.

>Nan



Wed, 31 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
What would be bullshit here?  many respond and
many relapse.  do you know believe that?

:-)
Nan

Quote:

> Bullshit!

> Have a nice day :)

> Ken



> >Many people respond regardless of genotype.  Very
> >few stay that way after quitting chemo, regardless
> >of genotype.

> >Nan



Wed, 31 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
And why do you think schering has been unwilling
to release data past six months?

Where is that information

Do you think they will add me to the list for side
effects.

hell no, my stats will be kicked out because I
stopped the poison at 45 weeks, they won't even
consider that I relapsed.  Shit they don't run PCR
enough to find out if people are relapsing on the
crap.

From what I have read on this NG alone I see much
more damage from it that positive benefits.  

I am entitled to say whatever I think about this
stuff.  It is science we are talking about.  I am
not the only one who has been hurt and if you read
the NG past for more than my post you would get a
lot of people who feel their lives have been
damaged by these poisons.

Why do you keep trying to push it.  Are you
getting a kick back from the companies or did they
buy you with the payment of the one paper you say
you wrote for them.  That is if you did.

I think people deserve to know everything about
this {*filter*}
most of us are {*filter*}s and have the right to make
informed decisions.

Nan

Quote:



> >Many people respond regardless of genotype.  Very
> >few stay that way after quitting chemo, regardless
> >of genotype.

> >Nan
>         Really?

>         Here are the statistics from the studies:

> ==================BEGIN ENCLOSED MATERIAL===================

> Clinical Studies

> The safety and efficacy of REBETOL Capsules have been established only
> in combination with interferon alfa-2b. In four well-controlled Phase
> III clinical trials, 2,089 hepatitis C patients were randomized to
> receive subcutaneous injections of interferon alfa-2b 3 million
> international units (MIU) three times per week and either {*filter*}REBETOL
> 1,000-1,200 mg or a matched placebo daily for 24 or 48 weeks followed
> by 24 weeks of off-therapy follow up. In these studies, efficacy was
> defined as sustained response (including both virologic and histologic
> improvement) at six months post-treatment. Eligible patients for these
> trials had chronic hepatitis C confirmed by a positive HCV-RNA
> polymerase chain reaction assay (PCR) (>100 copies/ml); a liver biopsy
> consistent with a histologic diagnosis of chronic hepatitis, with no
> other cause for the chronic hepatitis; and abnormal serum ALT.

> A total of 345 relapse patients were treated for 24 weeks in these
> trials, with 173 patients receiving REBETOL in combination with
> interferon alfa-2b and 172 patients receiving interferon alfa-2b
> alone. A total of 1,744 naive patients were treated for 24 or 48 weeks
> in these trials, with 505 patients receiving REBETOL in combination
> with interferon alfa-2b for 48 weeks and 503 patients receiving
> interferon alfa-2b alone for 48 weeks.

> Results of these studies showed that patients receiving REBETOL in
> combination with interferon alfa-2b had a significantly improved
> sustained virologic and histologic response as compared to patients
> receiving interferon alfa-2b alone. In the studies involving relapse
> patients, 48.6 percent of patients receiving REBETOL in combination
> with interferon alfa-2b had undetectable HCV-RNA levels (HCV<100
> copies/ml by PCR) at six months post- treatment as compared to 4.7
> percent of patients receiving interferon alfa-2b alone. In the studies
> involving naive patients, 41 percent of patients receiving the
> combination therapy for 48 weeks had undetectable virus levels at six
> months post-treatment as compared to 16 percent of patients receiving
> 48 weeks of interferon alfa-2b alone. The increased sustained response
> achieved with the combination of REBETOL and interferon alfa-2b, as
> compared to interferon alfa-2b alone, was maintained across all HCV
> genotypes in these studies.

> ================END ENCLOSED MATERIAL==================

>         If you consider 48.6 % of relapse patients and 41% of naive
> patients having undetectable viral loads six months after the
> conclusion of therapy to be "very few people" you really have
> ridiculously high expectations for the product. To me, those are
> excellent response rates, not very low ones!

>         I realize you weren't a responder yourself, and that you had
> extremely negative (and RARE) long term side effects from the therapy.
> But that doesn't justify deliberately misrepresenting the therapy as
> you constantly do. The response rates are excellent, only an
> exceptionally small percentage of the users experience long term side
> effects (versus the short term ones nearly all of us have to put up
> with), and it is without challenge the most effective treatment
> approach currently available from modern medicine. It has flaws, but
> not to the extreme you keep pretending it does.

>         Stop trying to convince people not to use combo when their
> physicians advise it Nan. You are NOT a medical professional (nor am
> I, but my citations come from scientific sources while yours come from
> the "Nan knows better than the scientists" school of medicine); you do
> NOT have their case histories in front of you; and you are NOT basing
> your advice on sound medical principles, only on personal experience
> and prejudice. Yet you take it on yourself to try to convince people
> to take an action that could cost them years off their lives. THAT is
> completely unreasonable and cruel--particularly in a scientific
> newgroup chartered for the discussion of hepatitis from a MEDICAL
> perspective.

>         Rick

> A zen will know,
>   when finally he reaches true enlightenment,
>     the sound of one hand clapping
> What then will he think of me?
>   For I know the sound of two.



Wed, 31 Oct 2001 03:00:00 GMT
 genotype 1b response to tx
Well Rick

Quote:

>    No Nan, it is NOT science you are talking about. It is
>personal bias. If it was science, you would publicly accept the
>results of research instead of claiming it is distorted by Schering.

I must say that you are being the one who is naive here. American
pharmaceutical companies have a history of distorting information.
Look at the number of {*filter*} that have been recalled. The Canadian
approval for Rebetron was quite a bit longer because they were
reviewing the the hematology results which appeared to be understated.
It finally got approved because there is nothing better.

I chose to take the combo because it gave me the best chance of
improving my health. There is nothing better at this time and time is
running out for many people with hep C.  If there was any better
treatment choice you can bet I would be on it.

Looking at the sheet of things I signed my life away for to get my
ribavirin for free makes you wonder. Of course you can say that is
standard...but that is only the way the world has become it never used
to be that way (that is a whole other debate).

I also think that experiences from {*filter*} like interferon are very
subjective and new. People are the test lab for these {*filter*} and all
the other chemicals they consume. They may not show up in data that
effectively. it all depends upon on the skew of the studier.

This group is very effective for many people for the simple reason
that much debate takes place here. People are searching for health
options that are right for them. I would not take any information
without thinking about it. That goes for scientific or subjective
opinions. Many studies that have been done have had another researcher
only discredit or confirm the previous study.........Some studies
suprress data just check into the studies on the dangers of cellular
telephones...the research is funded by a foundation setup by the
cellular companies and they have released no unfavourable
data....despite earlier data questioning their safety.

Peoples thought and opinions are valuable and should be encouraged.
Free speech no matter how silly or painful is still better than none.

Cal



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Anchorage Dude:

I'm a 1b and currently doing daily dosing on the combo. I've only been doing
it for 7 weeks now, although it seems like a lot longer. I'm using 3 mil
units of INF and 1200 milligrams of riba a day. I know this doesn't really
help you with your question, but neither is any of the other "debates" that
are going on here. I sincerely hope you get some responses that are pertinent
to your question.

Dennis

Quote:

> I'm curious- anyone out there type 1b and a responder to treatment? Found
> out today I'm 1b and load of 2.55 mil. I'd like to hear about your
> experiences. After biopsy I'm due to go into a study and do daily combo.

> Thanx

> Anchorage HCV guy



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Yes I will publicly accuse Schering of fraud and
if you were on HAAC mailing list you would know
why.

I did not voluntarily withdraw, I was almost dead
and I was taken off to prevent it! What did you do
search my email and the word {*filter*} and did
not bother to read anything else?

This NG if anything is biased in favor of all
interferon treatments.  That is the biggest
argument I have in here.

so you think none of the {*filter*} test, or physical
problems, like diabetes and hypertension have
anything to do with science.  HMMM wonder what the
scientist think.

Nan

Quote:



> >And why do you think schering has been unwilling
> >to release data past six months?

>         The citations I posted last night were from a public Schering
> statement written in MAY of 1999--this month!

> >Where is that information

>         In my message.

> >Do you think they will add me to the list for side
> >effects.

>         If you were part of the study group, your side effects were
> included in the statistics. Are you publicly accusing Schering-Plough
> of fraud?

> >hell no, my stats will be kicked out because I
> >stopped the poison at 45 weeks, they won't even
> >consider that I relapsed.  Shit they don't run PCR
> >enough to find out if people are relapsing on the
> >crap.

>         In other words, you voluntarily withdrew from the treatment
> (which invalidated your participation) and now are complaining that
> you weren't included in the statistics?

>         That's absurd. You made a choice. Live with it.

>         If your _physician_ withdrew you from the program, then you
> _were_ included, but if it was a personal decision the only inclusion
> justified is among the numbers of participants who "chose not to
> complete the program," where you _would_ have been included.

> >From what I have read on this NG alone I see much
> >more damage from it that positive benefits.

>         That's because the news group is biased in that direction.
> People seldom write to say "Hey, I don't have any problems," They
> write to say "Hey, I'm _having_ problems." You have been here long
> enough to know that.

> >I am entitled to say whatever I think about this
> >stuff.  It is science we are talking about.  I am
> >not the only one who has been hurt and if you read
> >the NG past for more than my post you would get a
> >lot of people who feel their lives have been
> >damaged by these poisons.

>         No Nan, it is NOT science you are talking about. It is
> personal bias. If it was science, you would publicly accept the
> results of research instead of claiming it is distorted by Schering.

>         You have every right to express your _opinions_, but you don't
> state them to be opinion, you dishonestly pretend that they are
> fact--a very different concept.

> >Why do you keep trying to push it.  Are you
> >getting a kick back from the companies or did they
> >buy you with the payment of the one paper you say
> >you wrote for them.  That is if you did.

>         I didn't say I wrote _any_ paper for Schering. What on earth
> are you talking about?

>         I receive _nothing_ from Schering--in fact I pay more for
> Rebetron in my area of the country than many others in this group have
> stated they pay in their own locales (one of the disadvantages of
> living in a small town environment is that prices are higher).

>         Why do you lie about them so consistently? Are you paid by
> their competitors to do so? That's about as absurd an accusation as
> your own--and just as likely to be true.

> >I think people deserve to know everything about
> >this {*filter*}
> >most of us are {*filter*}s and have the right to make
> >informed decisions.

>         I feel they should know everything about the product too--but
> I don't lie and distort the truth to encourage them to make decisions
> I, personally, believe to be "right" as you do. Instead I refer people
> to the most recent available scientific data--acknowledge that there
> _are_ potentially severe side effects to the regime, and encourage
> them to examine all the data (data, not raving accusations that have
> no basis in fact) and draw their own conclusions.

>         Try taking the same position. Instead of accusing Schering of
> fraud, provide scientific citations from peer reviewed studies in
> major journals to support your position. If no such citations exist,
> then you certainly don't have much of a case to argue.

>         Rick

> ". . . and the only measure of your worth and your deeds will
> be the love you leave behind when you're gone."
>  --Michael Callen, the Flirtations, from "Everything Possible"



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Well Geez!

All I wanted to do was find out others' hx with type 1b and tx. Where did
this other dialogue come from? If you're type 1b, I'd love to hear about
YOUR treatment experience, good or bad.

Thanx
HCV in Anchorage

PS- please don't quote stats and press releases- I've read a lot- we all
have the same WWW. Just personal experiences.

Thanx again



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
I am not sure why it seems that every post I make
needs further comment.  I was in a study with 30
other people.  Our study was about the dosage
amount of interferon.  In our support group we
discussed what went on.  there seemed to be no
genotype specific relation to us.  most all of us
responded in the beginning.  most of us have
relapsed.  of the very few 6 out of 30 who were
able to complete the 48 weeks, the others quit or
were taken off the study, only one has not
relapsed and she is 1a.  

so back to my first post,  many respond regardless
of genotype and many relapse regardless of
genotype.

I can not break anonymity of the others in the
support group.  only one other that I know reads
this NG and is strictly a lurker so you won't hear
from him.  

Nan

Quote:

> Well Geez!

> All I wanted to do was find out others' hx with type 1b and tx. Where did
> this other dialogue come from? If you're type 1b, I'd love to hear about
> YOUR treatment experience, good or bad.

> Thanx
> HCV in Anchorage

> PS- please don't quote stats and press releases- I've read a lot- we all
> have the same WWW. Just personal experiences.

> Thanx again



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Schering-Plough has been rebuked and forced to change their methods on
many occasions by the FDA, which is, incidentally, a weaker organization
in terms of control than it may appear to be. They have been severely
criticized by the FDA for misrepresenting the severity of Rebetron side
effects in advertising. They have been forced to alter planned clincial
trials when it was determined by the FDA that they were "rigged" (my term)
in terms of genotype in order to skew apparent results.  There are many
shades of dishonesty before you reach "fraud", especially in marketing.  I
feel the obscuring of genotype information in published reports by
Schering is seriously misleading.  A number like 45% response, for
example, may represent half as many resonses by genotype 1 patients (the
largest genotype in the US) as that of the others.  (To get back to the
original question).

Probably as a disclaimer, I should mention that I'm currently in week 15
of a PEG Interferon / ribavirin trial, conducted by Schering. Genotype 1b.
I felt it was my best current option, and felt the need to start
treatment. We get no results during the trial, so don't know my status,
don't feel the need to, at this point, as the previously severe side
effects have eased quite a bit.

I have to say that I find Nan's totally negative view of INF treatments to
be a useful counterbalance to the combo boosterism often found in the
medical community, if not on this newsgroup. It's true, though, we rarely
hear from those with no side effects and sustained responses on this
group. People should be afraid of these {*filter*}. But that's not reason
enough to avoid them, especially for non-genotype 1 folks.

Scott



Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Aloha Rick,

Without taking any sides one way or another in the discussion you are
having with Nan about combo treatments or Schering Plough - I do
understand what you have been trying to convey to Nan), I would like to
post the Charter of this newsgroup (I have quoted below the specific
Charter segment of the CFV from Deja).

Perhaps it is a good time for all us members of this newsgroup to give
the Charter a quick read.

Although this group *was* formed under the sci.med hierarchy, the
Charter specifically states that this newsgroup was formed with the
intent to (among other things) _give support to people infected with
hepatitis_, and to, quote: "not fractionalize or separate hepatitis in
any other newsgroup".

My interpretation of this Charter indicates that it is equally as
appropriate to have discussions here on alternative remedies, and to
have discussions about support, as it is to focus on the strictly
scientific medical aspects of this disease.

The message I thought I was seeing in your post to Nan was that
alternative groups are a more appropriate place to post than this
"scientific newsgroup", ... and that seemed to me to be placing
limitations on posts here which did not seem to have been intended by
the original Charter.  If that was not your intent (and I suspect it was
not), please accept my apology for the mis-read.

This also, BTW, applies to other posters who have, at various times,
stated that this is not a place to be posting "supportive type" posts -
that this is strictly a scientific/medical newsgroup (Rick, I realize
you were not doing that - but that comment gets posted quite frequently
here).

So - for all of us to review, here is the Charter adopted when this
newsgroup was begun:

Warm aloha,

Leola

~~ My two cents, not a penny more, not a penny less. ~~

________________________________________________

CHARTER: sci.med.diseases.hepatitis

The proposed newsgroup would be devoted to all aspects and kinds of
hepatitis diseases. This newsgroup would be a good place where all
people interested in the disease (doctors and experts in this field)
can communicate with each other and share views and opinions.
Not forgetting millions of people who are infected with hepatitis,
this newsgroup would give support to those people and would be a good
place for them to interact with the experts.
Let me make it clear here that the creation of this newsgroup is
not intended to fractionate or separate hepatitis discussion in any
other related newsgroup, but is to create a new specialized discussion
forum on hepatitis diseases. So, articles regarding hepatitis
cross-posted to other related newsgroups are welcomed.

A partial list of the intended topics would be:

        -All types of viral hepatitis and non viral hepatitis.
        -Prognosis and symptoms of hepatitis.
        -Complications of hepatitis.
        -The chronic carrier state.
        -Vaccines and {*filter*}.
        -Epidemiology of hepatitis.
        -Books, journals, articles and newsletters related to hepatitis.
        -Support for hepatitis patients.

___________________________


Nan said:

Quote:
> >This NG if anything is biased in favor of all
> >interferon treatments.  That is the biggest
> >argument I have in here.

Activist (Rick said):

Quote:
>         Then post to a newsgroup that isn't--like the alternative
> medicine ones. This is a scientific newsgroup, which means we look at
> things from a medical perspective. If you don't like that, tough. Live
> with it.

<snip>


Thu, 01 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
Thank you very much Leola for posting the charter.  I have copied it for
myself and I hope others do the same.

Carrie

The right to express our thoughts means something only if
we are able to have thoughts of our own.
                ~Eric Fromme~



Fri, 02 Nov 2001 03:00:00 GMT
 genotype 1b response to tx
   I have seen Nan terrify newcomers to this group
who are

Quote:
> considering combo therapy at the suggestion of their doctors. She
> doesn't do so by (legitimately) citing her own experiences--she does
> so by claiming false facts about the  product. THAT is cruel and
> dishonest and intolerable to any reasonable person in a scientific
> newsgroup.

Who exactly did I terrify, You comments get more
and more scattered and when you are trying to
argue with someone else you always point your
little way back to me.  

Could I suggest some therapy for you?  Your
obsession for me is becoming quite alarming.  Are
you receiving treatment for this behavior, do you
think it might be a side effect of the chemo.  It
could be making you paranoid as well.

Maybe you should think about this.

Nan



Fri, 02 Nov 2001 03:00:00 GMT
 
 [ 31 post ]  Go to page: [1] [2] [3]

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