Re: why treat

[Guest guest]

It

IS ok to wait if that’s the choice you make for yourself after evaluating

your medical situation and weighing your options. Then you need to follow

up and monitor your situation to see if you need to re-evaluate your decision.

But

for your own sake and for the family and friends that might have to watch you

die, don’t stick your head in the sand and ignore it. Know where

you stand before you make that decision.

RE:

Re: why treat

On the Duke

University site, when discussing who to treat, if I understand

right, they say peoples disease may not progress. My doctor said with

stage 1 liver damage I could be in this group, but still recommended treatment

cause I was an excellent candidate for clearing, I am healthy and I have the

family support.

Per Duke “Between 30 and 40 percent of patients

with chronic hepatitis C have normal serum aminotransferase levels. These

patients usually have mild disease that is unlikely to progress.” So like said, its okay not to treat as long as you monitor

your liver.

Kim

[Guest guest]

>

> The studies I've read say 15% clear on their own, and that's in the

first 3

> months of acute infection. Can you send us that study that says 24%

please?

Hopefully this will help

http://lib.bioinfo.pl/meid:194759

I misquoted it was 23%

Rambo Roy

[Guest guest]

-Hi Roy, You're a very lucky man. I caught what was dx'd at the time as Non a Non B in 1969 & ignored it for many years, then I was tested in 1990(I asked to be tested for B & my doc ran a full hep screen) & was positive for A & C. My doc wanted to immediately refer me to a G I but I

asked him to run some LFTs & said if things were normal, let's just leave it alone. Well, they weren't normal & three months later I had a biopsy, that showed cirrhosis. I tried the Interferon tx but didn't respond & two years later I tried Interferon & Ribivirin - did not respond to that either. A little over 3 years ago I wanted to try the present combo tx but after a repeat biopsy & some more LFTs we found my cirrhosis had decompensated & I couldn't do tx. Now I'm in ESLD & last September they found a tumor. I have liver cancer! I go

for a consult with a "Radiological Interventionist" on Monday about having an ablation done to remove the tumor - luckily it's small right now & there's only one! Then they want me to see a transplant team because once you've progressed to cancer, it'll probably return. You see why I say you're lucky? Each person with this disease progresses differently - for some of us tx is the only thing that'll save our lives, for others, a t p & there are some that not even that can help! Good Luck to all of us. I for one will do what I have to to say "I'm not a victim, I'm a HCV Survivor!" SuZie ----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ] On Behalf Of seataconeSent: Saturday, January 12, 2008 11:11 AMTo: HepatitisCSupportGroupForDummies Subject: Re: why treat The 30% number would be in agreement with long term studies some of over 40 years. I might also add that a full 24% spontaneously rid

thier bodies of HVC- RNA. Being diagnosed with HVC is not a death sentence...!! as far as chronic diseases go it seems to be.. one of the more benign.Had to laugh at a billboaed put up by one of the multi-national drug pushing corporations, it showed some guy with a beat up face and infered this is what your liver looks like with HVC. Not only are they pushing the "tx" but also the follow ons such as anti-depressives, anti-nauseaus, etc. etc. Roy

Next time I'm coming back as a cat

[Guest guest]

>

> -Hi Roy,

> You're a very lucky man.

as I'm finding out

Now I'm in ESLD & last September they found a tumor. I have liver

cancer!

SuZie

I have no come back, I wish you well in your future travels and no

matter what the outcome, no regrets

Roy

[Guest guest]

Roy,

I agree with you that we will all die of something. It is our choice

whether we choose to allow HCV to dominate our lives. Unlike you I

did choose the treatment offered in the 90's......and was a non

responder......twice. They came out with the ribovarin after the

first round. When I realized that it was not fixing anything, I

chose to live my life regardless. Worked, raised kids, still doing

all of that.......little to no effects of HCV. If you are lucky, you

can go a long time like that. Two years ago, it jumped up and

slapped me in my face again. All the while I was ignoring the HCV,

thinking that it could not run my life for me, it was getting even

with me and decided to spring it on me, as I am in end stage liver

disease, with what appears to be 4 tumors, and add on the lack of

oxygen that I am not receiving thanks to all of this, and I have

already been evaluated for a transplant. At this point they are

simply monitoring the tumors....one has to reach a certain size (and

not spread outside of the liver) before it can move me up the list,

or the blood oxygen has to get so bad that I have to have oxygen

supplements to move up the list. Either way, it is a race against

time.

If I had a chance to to do it differently would I? Oh yes!!!!!!!!!

If there was the treatment then that is out there now, and the

success rates that are out there........it would be worth that year

of my life in exchange for many more.

I wish you luck in your quest to not allow the HCV to dominate your

life, just be careful that by avoiding that " snake oil " you won't

wake up one day to find your quality of life slipping away faster

than you can even attempt to grasp at it. I will also say that when

I chose to not allow it to dominate my life, I stayed away from the

message boards thinking it was kind of " morbid " and I could not allow

myself to wallow in pity for myself. Now that it has jumped up at me

full force, I pay attention to the boards. I may not post that

often, but I keep up with them. So you may want to ask yourself, are

you really ignoring it? If you were, would you have posted on here

in the first place?

Sorry, I have never been known for my tact.

Judy

Judy

>

>

>

> i chose no treatment for now...am i the only one? and seriously is

> treatment truly worth a year + of ones life. i've had it 10 years

and

> never knew it??????????????????????????????????

>

> You are not the only one!!

>

> I was diagnosed in 1998 while applying for life insurance. I had

Hep-B

> when I was 16 years old and since have been diagnosed with non A

non B

> up until 1998 and the insurance thang.

>

> Being 52 now, I can only guess I have been carrying this virus for,

> Hmmmm. 36 years.... I have not had a biopsy, do not know my viral

load

> and really don't care. Only symptoms are occaisional dull pain in

upper

> right abdomen and... really nothing else aside from the aches and

pains

> that come with aging

>

> I believe I will die with the disease, not of it. I refuse to

allow

> Hep C to dominate my existence and find a certain morbid humor in

those

> that do

>

> I have done the Hep A vaccine but, as far as the snake oil they

sell

> for C treatment, no thanks!!

>

> We're all going to die.. some in accidents, many of cardio

diseases, a

> large amount due to cancers, most of old age.......

>

> Roy

>

[Guest guest]

That

was a 2001 study of transfused patients. I think we need to also look at

studies of all patients to get a more accurate number since transfusions are

only one method of transmission. I’ll look for some.

Re: why treat

>

> The studies I've read say 15% clear on their own, and that's in the

first 3

> months of acute infection. Can you send us that study that says 24%

please?

Hopefully this will help

http://lib.bioinfo.pl/meid:194759

I misquoted it was 23%

Rambo Roy

[Guest guest]

Judy, thanks for saying what I’ve (maybe more) been

thinking….

Re: why treat

Roy,

… So you may want

to ask yourself, are

you really ignoring it? If you were, would you have posted on here

in the first place?

Sorry, I have never been known for my tact.

Judy

[Guest guest]

are you really ignoring it? If you were, would you have posted on here

> in the first place?

>

> Sorry, I have never been known for my tact.

>

> Judy

No need for sorry, I was thinking the very same thing. It's not

possible to ignore this bump in the road. It is possible to BELIEVE

everything is just as it should be and move on.

Roy

[Guest guest]

>

> That was a 2001 study of transfused patients. I think we need to

also look

> at studies of all patients to get a more accurate number since

transfusions

> are only one method of transmission. I'll look for some.

>

>

>

>

What's the difference how one acqires the disease..??

It seems it's ok to cherry pick tx numbers 50-60% success ratio. This

for infected people who meet the profiles and are accepted into

treatment. If all infected people were allowed treatment the success

reates would be considerably lower.

Of course the drug pushing multi-nationals wont allow this to happen

Roy

[Guest guest]

Suzie,,

I haven't been keeping up on anything since Christmas, just dabble

and responding some. the FLU REALLY MADE ME SICK.. Since Christmas.

Personally I think it's almost at epidemic level here in H-Town.

But Then again

I'm NOT SURE WHAT AN EPIDEMIC LEVEL IS. IT seemed to flourish in my

atmosphere...it's as if we ( the bus people and health care workers

too)! are walking zombies. hahahahah hey!! NOW i HAVE ANOTHER

EXCUSE in understanding I'm cuckoo for for co-co puffs puffs !! i

AM SEEING THIS FOR THE FIRST TIME... May i TALK TO YOU ABOUT,

ER......EMAILl) wE CAN STAY ON THE BOARD, AND OFCOURSE YOU MAY

EMAIL ME HERE!. yOUR CHOICE, AND WHENEVER YOU WANT TO, IFN ya'

want too. K?

i CANNOT PROMISE a prompt response bnut I will have sincerety with

me.

Tell that SpYkE he needs to be good to you, because we , the people

will gather!! hahaha.

Del

- seatacone wrote:

>

> >

> > -Hi Roy,

> > You're a very lucky man.

>

> as I'm finding out

>

>

>

> Now I'm in ESLD & last September they found a tumor. I have

> liver

> cancer!

>

> SuZie

>

>

> I have no come back, I wish you well in your future travels and

> no

> matter what the outcome, no regrets

>

> Roy

>

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Suzie,,

I haven't been keeping up on anything since Christmas, just dabble

and responding some. the FLU REALLY MADE ME SICK.. Since Christmas.

Personally I think it's almost at epidemic level here in H-Town.

But Then again

I'm NOT SURE WHAT AN EPIDEMIC LEVEL IS. IT seemed to flourish in my

atmosphere...it's as if we ( the bus people and health care workers

too)! are walking zombies. hahahahah hey!! NOW i HAVE ANOTHER

EXCUSE in understanding I'm cuckoo for for co-co puffs puffs !! i

AM SEEING THIS FOR THE FIRST TIME... May i TALK TO YOU ABOUT,

ER......EMAILl) wE CAN STAY ON THE BOARD, AND OFCOURSE YOU MAY

EMAIL ME HERE!. yOUR CHOICE, AND WHENEVER YOU WANT TO, IFN ya'

want too. K?

i CANNOT PROMISE a prompt response bnut I will have sincerety with

me.

Tell that SpYkE he needs to be good to you, because we , the people

will gather!! hahaha.

Del

- seatacone wrote:

>

> >

> > -Hi Roy,

> > You're a very lucky man.

>

> as I'm finding out

>

>

>

> Now I'm in ESLD & last September they found a tumor. I have

> liver

> cancer!

>

> SuZie

>

>

> I have no come back, I wish you well in your future travels and

> no

> matter what the outcome, no regrets

>

> Roy

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I

don’t know if there’s a difference. But that’s still

only one study. That’s why I’m going to look for more.

I’m

no fan of the drug companies, but how can they seriously consider all patients

who ever did one shot in their success rates? People stop tx for a any

number of reasons, some of them not related to the drug itself – some have

misinformation that if they clear at 12 weeks, they can stop; some stop for

financial reasons – I almost did. The insurance companies play a

part in this, as does the government for people getting gov’t health

aid. And how can you consider a drug’s success rate if you count

people who never tried it for whatever reason? Should you cause the number

to drop because you choose not to try it? Should they risk people lives who

have decompensated liver disease in order to get more accurate numbers?

Should they stop excluding pregnant women from tx when they know the riba is

hazardous to a fetus so they can get “realistic” numbers? I

don’t think there is as much “cherry picking” going on as you

seem to think. Maybe in trials, because they are trying to prove or

disprove a certain theory, but not in actual tx. Just my thoughts.

Re: why treat

What's the difference how one acqires the disease..??

It seems it's ok to cherry pick tx numbers 50-60% success ratio. This

for infected people who meet the profiles and are accepted into

treatment. If all infected people were allowed treatment the success

reates would be considerably lower.

Of course the drug pushing multi-nationals wont allow this to happen

Roy

[Guest guest]

Roy,

Everyone is entitled to their opinion and many times our own personal

lifestyles dictate those opinions. In my particular scenario, I am a

single parent (no their father has never been a part of the picture)

of three teenagers. My main goal in life is to have them grow up and

not lose the only stability in their life as they grow into adults.

I have one in college now and another graduating high school in the

spring and off to college then. It leaves me with one at

home.........I am not ready to accept that things are as they should

be and go on. There is more at stake than just my life. For myself

it is acceptable, for the three kids that depend on me, it is

unacceptable. I don't fight this for me as much as I do for them.

You can argue that kids lose their parents and learn to deal with

it......but if I don't fight this with everything I can, then they

did not lose me.........I gave up.

>

>

>

>

> are you really ignoring it? If you were, would you have posted on

here

> > in the first place?

> >

> > Sorry, I have never been known for my tact.

> >

> > Judy

>

> No need for sorry, I was thinking the very same thing. It's not

> possible to ignore this bump in the road. It is possible to BELIEVE

> everything is just as it should be and move on.

>

> Roy

>

[Guest guest]

Del, e-mail me anytime, in or out of group, you have my addy. SpYke knows his place (on top) & treats me as well as can be expected. SuZie & Sir SpYke the Magnificent - G O T - loving his Mama to bits right now but not because of your threats bud!Deliman wrote: Suzie,,I haven't been keeping up on anything since Christmas, just dabbleand responding some. the FLU REALLY MADE ME SICK.. Since Christmas.Personally I think it's almost at epidemic level here in H-Town.But Then againI'm NOT SURE WHAT AN EPIDEMIC LEVEL IS. IT seemed to flourish in myatmosphere...it's as if we ( the bus people and health care workerstoo)! are walking zombies. hahahahah hey!! NOW i HAVE ANOTHEREXCUSE in understanding I'm cuckoo for for co-co puffs puffs !! iAM SEEING THIS FOR THE FIRST TIME... May i TALK TO YOU ABOUT,ER......EMAILl) wE CAN STAY ON THE BOARD, AND OFCOURSE YOU MAYEMAIL ME HERE!. yOUR CHOICE, AND WHENEVER YOU WANT TO, IFN ya'want too. K?i CANNOT PROMISE a prompt response bnut I will have sincerety withme.Tell that SpYkE he needs to be good to you, because we , the peoplewill gather!!

hahaha.Del

Next time I'm coming back as a cat

[Guest guest]

Judy ~~ Your emails, including this one, are some of the most inspiring I have ever read. I guess my first motive for tx is that I didn't want to suffer through ESLD or a tp. Selfish in one sense, but also I am motivated not to be a burden on those that I love by them having to care for me long term. In my younger and wilder days, I caused a good deal of misery for my family, and though my life has turned around significantly in the last 17 years, this would further add to the consequences of my younger acts. As I spent more time thinking about it, I knew that my death would affect them even more and that we all would be cheated out of the good years -- wonderful experiences in loving and living life. So my motivations for tx are multi-faceted, including wanting to give hope

to others who also have HCV. As a result, I began tx and this week had my second shot. It has not been too bad, all in all, and except for bouts of nausea and a few headaches, I'm doing very well. Blessings to you and your family, jkost1959 wrote: Roy,Everyone is entitled to their opinion and many times our own personal lifestyles dictate those opinions. In my particular scenario, I am a single parent (no their father has never been a part of the picture) of three teenagers. My main goal in life is to have them grow up and not lose the only stability in their life as they grow into adults. I have one in college now and another graduating high school in the spring and off to college then. It leaves me with one at home.........I am not ready to accept that things are as they should be and go on. There is more at stake than just my life. For myself it is acceptable, for the three kids that depend on me, it is unacceptable. I don't fight this for me as much as I do for them. You can argue that kids lose their parents and learn to deal with it......but

if I don't fight this with everything I can, then they did not lose me.........I gave up. .

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

,

Thank you. Now if I could only get my kids to listen to me the same

way..............lol.

Actually, this is the most I have ever responded to any thread. I do

respect other's opinions, whether I agree with them or not; I guess

I just got riled up when I read words like " snake oil " etc. When

those type of words are used; it is demeaning to those that are

fighting so hard to beat this.

So on this note, I will end it. By the way, I completely understand

giving your family so much grief back then, I think in some form we

all did, the important thing is that you, others, and myself all grew

up. Recognizing and taking responsibility for our actions a long

time ago is part of the growing up process.

I wish you the very best through your tx. From everything I have

been reading, the success rates are much better now than the early

90's. Sounds like they have truly improved the treatment. My

thoughts are with you. You will do this and be successful as well.

Judy

> Roy,

> Everyone is entitled to their opinion and many times our own

personal

> lifestyles dictate those opinions. In my particular scenario, I am

a

> single parent (no their father has never been a part of the

picture)

> of three teenagers. My main goal in life is to have them grow up

and

> not lose the only stability in their life as they grow into adults.

> I have one in college now and another graduating high school in the

> spring and off to college then. It leaves me with one at

> home.........I am not ready to accept that things are as they

should

> be and go on. There is more at stake than just my life. For myself

> it is acceptable, for the three kids that depend on me, it is

> unacceptable. I don't fight this for me as much as I do for them.

> You can argue that kids lose their parents and learn to deal with

> it......but if I don't fight this with everything I can, then they

> did not lose me.........I gave up.

>

[Guest guest]

I

think almost everyone who has voiced an opinion on this matter has included a

statement to the effect that to treat or not to treat is a personal decision

and then has gone on to say how they personally made their own decision.

This group is known for shooting straight and not glossing over things even if

they are unpleasant, and we do tend to be opinionated at times. The

active members here are pro-active about their healthcare and I assume that the

quiet members are, too or they wouldn’t be here. We aren’t

much for sticking our heads in the sand.

Treatment

IS a personal decision. Treatment is NOT for everyone. But people

who are undecided need to hear what reasons those of us who took that step had

for doing it in order to help them make their decision. That’s

why we’re a support group. Nobody is trying to force anyone to do

tx or make them feel that they are making a bad decision. We are sharing

our personal experiences.

Re:

Re: why treat

I have left this topic alone thinking that we would

leave it alone. Well it seems to keep staying around. I feel like you are being

made to feel bad for not doing tx. You choose what is right for you. I want to

do tx so I have a less chance of having other problems in life. We all die in

the end the coice is yours how. Good luck either way.

D

[Guest guest]

The reason I chose to respond largely has to do with the premise that Hep C is a benign disease. For some this is the case, for others they pay a heavy price for having it...we have both here in our group. Unless we hear all sides we cannot get a clear picture. A flippant, uniforned attitude is why I responded. It was people's honesty here that gave me the courage to go forward. I hope that I can have that same honesty with others. Blessings, Doyle wrote: I have left this topic alone thinking that we would leave it alone. Well it seems to keep staying around. I feel like you are being made to feel bad for not doing tx. You choose what is right for you. I want to do tx so I have a less chance of having other problems in life. We all die in the end the coice is yours how. Good luck either way. Djkost1959 <jkost1959> wrote: Roy,I agree with you that we will all die of something. It is our choice whether we choose to allow HCV to dominate our lives. Unlike you I did choose the treatment offered in the

90's......and was a non responder......twice. They came out with the ribovarin after the first round. When I realized that it was not fixing anything, I chose to live my life regardless. Worked, raised kids, still doing all of that.......little to no effects of HCV. If you are lucky, you can go a long time like that. Two years ago, it jumped up and slapped me in my face again. All the while I was ignoring the HCV, thinking that it could not run my life for me, it was getting even with me and decided to spring it on me, as I am in end stage liver disease, with what appears to be 4 tumors, and add on the lack of oxygen that I am not receiving thanks to all of this, and I have already been evaluated for a transplant. At this point they are simply monitoring the tumors....one has to reach a certain size (and not spread outside of the liver) before it can move me up the list, or the blood oxygen has to get so bad that

I have to have oxygen supplements to move up the list. Either way, it is a race against time.If I had a chance to to do it differently would I? Oh yes!!!!!!!!! If there was the treatment then that is out there now, and the success rates that are out there........it would be worth that year of my life in exchange for many more. I wish you luck in your quest to not allow the HCV to dominate your life, just be careful that by avoiding that "snake oil" you won't wake up one day to find your quality of life slipping away faster than you can even attempt to grasp at it. I will also say that when I chose to not allow it to dominate my life, I stayed away from the message boards thinking it was kind of "morbid" and I could not allow myself to wallow in pity for myself. Now that it has jumped up at me full force, I pay attention to the boards. I may not post that often, but I keep up with them. So you may want

to ask yourself, are you really ignoring it? If you were, would you have posted on here in the first place?Sorry, I have never been known for my tact.JudyJudy>> > > i chose no treatment for now...am i the only one? and seriously is > treatment truly worth a year + of ones life. i've had it 10 years and > never knew it??????????????????????????????????> > You are not the only one!!> > I was diagnosed in 1998 while applying for life insurance. I had Hep-B > when I was 16 years old and since have been diagnosed with non A non B > up until 1998 and the insurance thang.> > Being 52 now, I can only guess I have been carrying

this virus for, > Hmmmm. 36 years.... I have not had a biopsy, do not know my viral load > and really don't care. Only symptoms are occaisional dull pain in upper > right abdomen and... really nothing else aside from the aches and pains > that come with aging> > I believe I will die with the disease, not of it. I refuse to allow > Hep C to dominate my existence and find a certain morbid humor in those > that do > > I have done the Hep A vaccine but, as far as the snake oil they sell > for C treatment, no thanks!!> > We're all going to die.. some in accidents, many of cardio diseases, a > large amount due to cancers, most of old age.......> > Roy> Never miss a thing. Make Yahoo

your homepage.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

>

> The reason I chose to respond largely has to do with the premise

that Hep C is a benign disease. For some this is the case, for

others they pay a heavy price for having it...we have both here in

our group. Unless we hear all sides we cannot get a clear picture.

A flippant, uniforned attitude is why I responded. It was people's

honesty here that gave me the courage to go forward. I hope that I

can have that same honesty with others.

>

> Blessings,

>

Jeeez,

Because my thinking doesn't fall in with the party lines I'm flippant

and uninformed... I think tolerance is a very important trait for

anyone on any road to recovery. I think it might help to know the

meaning of flippant before one brands another with that moniker,

there was no levity, frivolous disrespect nor lack of seriousness.

Possibly it could be considered shallow..... : )

Roy

[Guest guest]

>

> The reason I chose to respond largely has to do with the premise

that Hep C is a benign disease. For some this is the case, for

others they pay a heavy price for having it...we have both here in

our group. Unless we hear all sides we cannot get a clear picture.

A flippant, uniforned attitude is why I responded. It was people's

honesty here that gave me the courage to go forward. I hope that I

can have that same honesty with others.

>

> Blessings,

>

Jeeez,

Because my thinking doesn't fall in with the party lines I'm flippant

and uninformed... I think tolerance is a very important trait for

anyone on any road to recovery. I think it might help to know the

meaning of flippant before one brands another with that moniker,

there was no levity, frivolous disrespect nor lack of seriousness.

Possibly it could be considered shallow..... : )

Roy