Re: On the fence about treatment

September 24, 2002

hi, i don't have any answers i waiting to start my treatment and get my genotype

test, i am really scared with haveing 3 little kids. iam 42 and have no energy

at all whatsover.

kathy b email any time i am here for you.

>>

>

September 24, 2002

I am certainly no expert on any of this, but I chose *not* to go on the protocol

right now. I based this on a paper the NIH released on August 27, 2002. It

gave me the most current information from some of the best doctors in the

nation. You can find this paper at

http://www.NIHConsensusDevelomentProgramConsensusStatements116_ManagementofHepat\

itis

C2002.htm

I am genotype 1B, and I know the genotype 1's don't respond as well as the

genotype 2's and 3's. Since I didn't have any damage present when I had my

biopsy last June, I chose not to risk the side effects of the treatment. I

might have considered taking it if I was genotype 2b, like you, since the

success rate is so much higher. Sheesh, all I had to do was to read the package

insert that Schering said to me. The first thing on the page was a black box

with warnings written in it. It said this drug *will* cause hemolytic anemia.

I had to look up hemolytic anemia to see what it was. It meant the drug will

destroy my red cells faster than my bone marrow can replace it. The solution is

to start giving myself shots of Procrit on top of the other stuff - one more

drug with side effects!

I've been taking the advice of lots of people about things that I can do to feel

better. A few months ago, I felt the same as you. Try some simple things to

get yourself moving. The more sedentary you are, the more sedentary you become.

Get on a good multi-vitamin without iron (Centrum Silver is one), get out and

walk every day, even if it's to the corner and back. Drink lots of water.

Don't fight fatigue, when you first feel it, go with it and lay down. It's

surprising, sometimes laying down for 10 minutes saves me from a 2 hour nap

later on. Try yoga, it's amazing.

Your doctor is wrong about saying that it might just be that you're getting old.

Heck, I'm almost 55, and I feel better than you do most days! Have you looked

for a local support group in your area? I found one in my area (Chicago

suburbs) the other day, and will be starting in October.

Best wishes to you,

Marilyn

On the fence about treatment

I don't post here very often, but I really need some opinions. I've

been approved for a Peg-Intron study here in CA, and I thought I

wanted to proceed until I read ALL the SIDE EFFECTS (some reversable,

some not.) My last biopsy was 3 yrs ago - Stage 1. Still waiting

for an updated viral count. I'm a 2b. I am just worn out and tired

of feeling lousy, tired of worrying about what will happen if I

continue to delay treatment, tired of not having the will or energy

to travel far from home on my own. I'm losing my independence and

it's really starting to bother me!

My new doc (infectious disease guy) indicated he might not recommend

treatment for me, but it was my call. He also said I might just be

getting old (!) and would probably not feel any better after

treatment. I'm not that old (48) and I know how I feel when I have

the occasional good day.

All thoughts/comments welcome. How would you proceed? Is there

something better out there in development - worth waiting for?

Thanks in advance.

September 24, 2002

I am sorry but I do not agree with your DR!!!! I am 60, and I refuse to let

this get me down!!! the treatment is better then I was feeling, I will get

over the side affects and I want to stick around as long as I can, my mother

in law is 78 and she was building a porch last month. more energy then I

have , she don't smoke or drink and eats everything but pork and catfish !!

the hep c is what has taken my energy!! and when I started treatments it

took a bunch more for about 2 months, but it is slowly getting better!! You

do what you have to but I think you should get another DR!!

CAROL

GET TESTED FOR HEPATITIS'S C.

8 Million in the US have HCV .

HCV can lead to fibrosis, necrosis.cirrhosis

and liver cancer. get it from transfusions and

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body percings, dailysis,Military vaccinations,

mancurisist equipment, unprotected sex, and any blood to blood contact.

On the fence about treatment

> I don't post here very often, but I really need some opinions. I've

> been approved for a Peg-Intron study here in CA, and I thought I

> wanted to proceed until I read ALL the SIDE EFFECTS (some reversable,

> some not.) My last biopsy was 3 yrs ago - Stage 1. Still waiting

> for an updated viral count. I'm a 2b. I am just worn out and tired

> of feeling lousy, tired of worrying about what will happen if I

> continue to delay treatment, tired of not having the will or energy

> to travel far from home on my own. I'm losing my independence and

> it's really starting to bother me!

>

> My new doc (infectious disease guy) indicated he might not recommend

> treatment for me, but it was my call. He also said I might just be

> getting old (!) and would probably not feel any better after

> treatment. I'm not that old (48) and I know how I feel when I have

> the occasional good day.

>

> All thoughts/comments welcome. How would you proceed? Is there

> something better out there in development - worth waiting for?

>

> Thanks in advance.

>

September 24, 2002

I have tried going to this site and it says cant be found??

CAROL

GET TESTED FOR HEPATITISIS C.