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Medical Forum / Diseases and Disorders / Hepatitis / December 2008

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Cindy - 20 Dec 2008 07:51 GMT
Hi,
I'm Cindy, a married working Mom..just turned 50.,
After being on Peg/Rib for 6 months now, Dr. says I should discontinue
treatment, With a starting viral load at 6 million something, now at 1
million something,
My liver in Stage 3.....I'm thinking ....now what?
Cross my fingers, and hope the new drug coming will be available before
my liver is in stage 4?
I still have about 2 weeks supply of meds...they told me I could finish
them or just stop.
I hesitate to just stop?
I was thinking 2nd opinion?
Thip - 20 Dec 2008 12:43 GMT
> Hi,
> I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
> I hesitate to just stop?
> I was thinking 2nd opinion?

Continuing or stopping is entirely up to you.  I've tried 3 times and was so
sick it was almost a relief to quit.  Frankly, if you don't feel good I see
no sense in causing yourself unnecessary pain.  It hurts emotionally to have
to stop; in a sense, you feel like you have failed when in fact modern
medicine has failed you.  I went into tx with very high hopes and
expectations, so I had a long fall when I crashed.

Second opinions are ok; just beware of false hopes.  Do you trust your
doctor?  I went doctor-shopping for  a while, trying to find that magic
answer, and I ended up setting myself up for more disappointment.  Now I'm
back with my original gastro who dx'd me in 2002.

I'm a 4/4 myself, a widowed working mother.  My liver isn't quite to the
point where, if I killed the dragon, it wouldn't regenerate enough to give
me a normal lifespan.  My doctor says I'm "stable," whatever the heck that
means.  I've learned to be content with what I've been handed and actually,
life is a lot of fun these days.  For me, the trick has been learning not to
let this dragon rule my life.  I know you want the the HCV to go away, but
just remember that living with it is not the end of the world.

This can be a good place to bring your hurts, pains, and frustrations.  Most
everyone here has "been there, done that" in one way or another.  I was
heavily dependent on it for a long time because it was the only place I
could go where folks intantly understood what i meant.  The people here
really helped me work through all that emotion, and a lot of credit goes to
them for helping me get where I am now.
Dwight - 20 Dec 2008 16:22 GMT
>> Hi,
>> I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 35 lines]
> really helped me work through all that emotion, and a lot of credit goes to
> them for helping me get where I am now.

Hi there. Thip's story is pretty much the same as mine. I haven't given
up on trying to clear the virus, but found there is peace of mind in
learning to live with it. Hang in there and learn as much as you can
from the people here, there isn't much about this virus that one of us
hasn't experienced already.

Dwight
Cactus Jammies - 30 Dec 2008 18:38 GMT
"Dwight" <Dwight@not_real.com> wrote>
> Hi there. Thip's story is pretty much the same as mine. I haven't given
> up on trying to clear the virus, but found there is peace of mind in
[quoted text clipped - 3 lines]
>
> Dwight

mee three

cactus jammies   3/3, relapser, 1b
greyhackles - 20 Dec 2008 23:21 GMT
>Hi,
> I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
>I hesitate to just stop?
>I was thinking 2nd opinion?

Hello Cindy. And welcome to our little dysfunctional cave.

Gotta be frank here: barring a totally effed-up viral load test, it's clear
you aren't responding to your current treatment regimen. With less than a 1
log drop after 24 weeks on therapy, continuing the meds won't do any good for
you - it's hardly "maintenance therapy" with that high a viral load.

There are two drugs in the pipeline that are quite promising for
non-responders, and one of them could be approved within the next year or so.
At this point I'd keep my hopes up for that to come to pass, and try to keep
your liver as happy as possible in the mean time.

Things you can do: get your BMI down low, eat as healthy as possible and avoid
red meat, get plenty of rest and avoid stress. Ask your doctor to do an iron
load test, and if it is high, ask how you can lower it. Iron is rocket fuel
for liver damage, and there have been more than enough clinical trials
demonstrating the benefit of low iron loading to justify therapeutic
phlebotomy.

Good luck - and hang in there. It probably took you decades to get to this
point, you're most likely going to be around for a couple of decades more :-)

/greyhackles
anonymousone - 21 Dec 2008 03:50 GMT
> Hi,
>  I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
> I hesitate to just stop?
> I was thinking 2nd opinion?

Try looking at clinical trials.

www.clinicaltrials.gov
eileen - 22 Dec 2008 05:39 GMT
> Hi,
>  I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
> I hesitate to just stop?
> I was thinking 2nd opinion?

Hi Cindy,

Like most people said you should be clear by now if it was
working,but........................ You could have had an idiot like
my first treatment dr. who had me on half the dose of Peg and half the
dose of Riba. Not only that this jerk didn't even have a treatment
nurse so by the time I was able to even talk to him on the phone was
nilch.  His secretary would call me with results. I trusted him
because at our first interview he said he knew me from the hospital
when I worked with him there once or twice.  He always sounded like he
knew what he was talking about but I soon found out because I was a
nurse and knew alot about hepatitis c that he assured me that I would
have control. That wasn't what happened.  When I didn't clear at 13
weeks he wanted to stop, that's when I found out  the dose he
prescribed (the pen) was half the normal dose because he used my
weight as a gauge. So I suggest you find out what you are taking and
how much.  I found someone through another patient here and after a
long road with heavy duty stuff, I cleared. It is over a year and a
half and though I went thru Kidney failure twice this summer and have
other neuro symptoms, I am clear, was it worth it? Maybe and maybe not
it depends I know my husband regrets the problems I suffer from, I
knew what the treatment was, I had waited 28 years since dx for my
chance since I was declining and I had already lost a kidney and had
neuro problems before treatment I wanted to be free of the hep so here
I am. I have two standby's for transplant that I hope I won't ever
need, but my nephrologist can't give me any idea when I will need at
least one of them. Find out what your dose was- if it was correct,
that would be your choice, just wanted you to know you have to weigh
the risks you already have.
eileen
Waterspider - 22 Dec 2008 19:25 GMT
"eileen" <samiamtwoyou@yahoo.com> wrote
<snip> I had waited 28 years since dx for my
chance since I was declining and I had already lost a kidney and had
neuro problems before treatment I wanted to be free of the hep so here
I am.

You were diagnosed 28 years before you undertook treatment?
greyhackles - 22 Dec 2008 20:30 GMT
>"eileen" <samiamtwoyou@yahoo.com> wrote
><snip> I had waited 28 years since dx for my
[quoted text clipped - 3 lines]
>
>You were diagnosed 28 years before you undertook treatment?

You seem surprised, WS - but you shouldn't be. This isn't called the "silent
disease" for nothing. It can easily take three decades or more for clinical
symptoms of the chronic infection to manifest in some folks.

And then there are the generally clueless medical practitioners. My PC kept
telling me I was fine, didn't need to do therapy, and that none of his HCV+
patients had ever gotten really sick.

It took me years to learn to ignore his advice.

fwiw, I was infected in 2003 and started treatment in the fall of 2004...

Happy Holidays!

/greyhackles
greyhackles - 22 Dec 2008 22:32 GMT
>>"eileen" <samiamtwoyou@yahoo.com> wrote
>><snip> I had waited 28 years since dx for my
[quoted text clipped - 19 lines]
>
>/greyhackles

Yuck - I totally dumb-thumbed that. I blame Christmas Chaos ;-)

I was infected in 1973 with a full-blown set of acute "non-A/non-B" symptoms
(no actual HCV tests existed for another 10 years).
Got dx'd as HCV+ in 1985. Started treatment in 2004...

/greyhackles
Dwight - 22 Dec 2008 22:47 GMT
>>> "eileen" <samiamtwoyou@yahoo.com> wrote
>>> <snip> I had waited 28 years since dx for my
[quoted text clipped - 26 lines]
>
> /greyhackles

I was probably infected in 1980 and first diagnosed with "non-A/non-B"
hep in 1986, when I was told that I could no longer donate blood. When I
went to the doctor to check it out, I was told that the test were
probably wrong, that a drink the night before was probably to blame for
the error. I was finally diagnosed with Hep-C in 1992 and started my
first round of tx in 1998. Second round of tx in 2004 and my third round
? (yet to come).

Dwight
Paul - 22 Dec 2008 07:01 GMT
On Sat, 20 Dec 2008 02:51:36 -0500, CMB155@webtv.net (Cindy), in
message ID <23311-494CA408-1149@storefull-3231.bay.webtv.net>, in the
newsgroup alt.support.hepatitis-c wrote:

>Hi,
> I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
>I hesitate to just stop?
>I was thinking 2nd opinion?

There's no point continuing with this treatment.  Better to gather
your resources for another attempt when (if?) telaprevir gets
approved.  It sounds like it gives better results.
The drug supply you have isn't going to clear the virus for you and
will only make you feel sick longer.  I'm amazed they gave you the
choice to continue really.
Sorry if that sounds negative but that's the reality for now.  It may
well go better for the future though.
You can do tx with a liver at stage 4 (cirrhosis).  It usually takes
quite a while for things to deteriorate to the point where you could
become untreatable  i.e. when the cirhossis becomes "decompensated".
Sorry I can't post something better.
topcat - 23 Dec 2008 20:24 GMT
> Hi,
>  I'm Cindy, a married working Mom..just turned 50.,
> Hey Cindy, sorry to hear about the bad news.  there are others here going thru similar struggles, some sound better at coping and seem to have some good advice.  I hope you have loving people close at hand to help you thru, but for what it's worth, here's a hug coming your way (((   ))))
TC
TX-012 - 24 Dec 2008 19:57 GMT
> Hi,
>  I'm Cindy, a married working Mom..just turned 50.,
[quoted text clipped - 8 lines]
> I hesitate to just stop?
> I was thinking 2nd opinion?

Stop. THIS treatment will not work. If you wish to retreat now, get
into a clinical trial of teleprevir or one of its competitors, or try
Infergen. Or your may wish to wait until the release of the new
drugs---this is something to discuss with your doctor, and may depend
on the speed at which your liver is deteriorating. In any case, all
the remaining drugs will do is cause you more suffering. Perhaps you
can give the riba away...
 
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