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Medical Forum / Diseases and Disorders / Hepatitis / August 2008

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Kyle J. - 08 Aug 2008 13:51 GMT
Hey all,
   Just got the results back from by biopsy.  Doc says I'm barely showing
stage one.  This is very cool.  Now she's recommending that I hold off for a
few years untill new medication becomes available.  She seems to believe
that there WILL be better meds in a couple of years.  I've mixed feelings
about it.  Yeah I'm stoked that my liver is in good shape but I'm kind of in
a good position to deal with treatment right now if there is such a thing
and have no idea what things will be like in a few years.   Anyway,  I've
appreciated the input from you good folks.  I might not be around for a
while but will probably be back later :-)

Kyle J.
Cactus Jammies - 08 Aug 2008 15:13 GMT
> Hey all,
>    Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 8 lines]
>
> Kyle J.

///////////////

Hey Kyle,
 Your good news is our good news.  Confidence about new meds.

best wishes

cactus jammies
greyhackles - 08 Aug 2008 17:16 GMT
>Hey all,
>    Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 8 lines]
>
>Kyle J.

Tough call, lots of things to consider. Chronic HCV affects more than just the
liver, and the longer one waits, the higher the odds of clinical
manifestation. Generally, the earlier one attempts treatment, the more likely
the success. Otoh, in a couple of years Telaprevir, perhaps followed by
Boceprevir, will be available, bringing significant enhancement of the odds of
success.

Then there's the aspect of "do-ability" that you mentioned. Younger folks
generally tolerate the treatment better. Folks with good health insurance that
fully covers treatment and side-effect management don't have that stress
factor that those without have to endure. People with more flexible vocational
situations will be better off than those who have more strict situations to
deal with.

And on and on...You have to weigh all the factors and make the call.

I guess those of us who had significant liver damage and/or other
manifestations had an easier time making the decision to treat ;-)

Cheers - and good luck whichever way you go...

/greyhackles
Russian - 09 Aug 2008 19:05 GMT
I just want to back up greyhackles on this...

I decided to wait.  Of course when I was first diagnosed, there was NO
treatment.  Then there was every-day interferon, then the 2-drug
cocktail, then once-a-week peg with daily pills.

On my 3rd biopsy over about 10 years, I showed stage 3.  I decided to go.

I got to 0 but it didn't sustain after treatment.

The question for you is how fast is it moving.  If its stage one and
going nowhere, waiting sounds good.

On the other other hand, it's easier to beat now than later.  The virus
is likely not embedded in scar tissue (much) at this point.

Also you are stronger than you will be if you wait until stage 3.

Like greyhackles says, it's a tough call.

I would suggest the swing factor is if this is a better time in your
life to be down a year.  It's never a good time, but if you have the
money, a job you can hold even if you're down a bit, and supportive
family and/or friends, you might want to go for it.

If only we could look into the future...

Also, for all you know, you might be one of the "Lighters" - people who
get only light side-effects.  Not rare at all.  Heavy to light is a
steady continuum and people's experiences are all over the map.

Good luck...

>> Hey all,
>>    Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 31 lines]
>
> /greyhackles
TX-012 - 08 Aug 2008 18:12 GMT
> Hey all,
>     Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 4 lines]
> a good position to deal with treatment right now if there is such a thing
> and have no idea what things will be like in a few years

I think you just answered your own question...
Cody - 08 Aug 2008 18:17 GMT
> Hey all,
>     Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 8 lines]
>
> Kyle J.

If you're genotype one, wait for sure. Why go through a treatment that
will be really uncomfortable when odds are you won't clear anyway?

Cody
TX-012 - 08 Aug 2008 18:42 GMT
> > Hey all,
> >     Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 13 lines]
>
> Cody

I'm curious to know what makes you assume the odds of an SVR are <50%
for Kyle, even with standard combo treatment for 48 weeks (as I've
noted, I'm doing 72, with fluvastatin, so you can tweak things for
greater success). Odds of an SVR vary greatly depending on the
demographic...obviously the fact that his liver is in good shape is
great...Other factors which improve odds a great deal include race
(definitely better to be white in this instance), not being
overweight, being youngish, not drinking...

And so on...
dBo - 09 Aug 2008 01:35 GMT
That IS great news, and we are all happy for you and always glad to
hear {{good news}}

I agree with Grey, so many different factors to consider beside just
how much liver damage so far....I'm sure you are greatly relieved by
this news and feel the pressure to treat is off for now, and that's
ok. I'm sure many docs would agree with yours as well.

My advice would be to also consider what your socio-economic situation
is currently vs what it could be in the future, should you find
yourself a couple of years down the road in more dire staits and feel
more urgently that the time to treat has arrived. (My company, for
example, is fond of reminding all 300 plus of us that anyone of us
could get run down by that Big Yellow Bus on any given day with no
warning... haha!)

I don't remember you mentioning factors like your age, but I'm
guessing that you are somewhere in the general vicinity of 50-ish
since I believe you mentioned before that you did A Bad Deeds back in
the late eighties....even if you were only 15-ish then, a rough
estimate tells me that this is 30 years later than the late
eighties...

I was diagnosed in late 2005, age 52, and my best guess is that I
contacted it in the 70's - it took that long for the damage to reach
the point of giving "warning signs" that someone picked up, and that
was only MILDLY elevated liver enzymes
...yet my liver was already at stage 3...

Did it cross my mind that if ONLY it had been discovered years ago,
and treated, I might have ended up wiht way less liver damage and so
on and so on....?? Absolutely!  Yet I have to realize that if it HAD
been diagnosed 20 years ago, I would not have had the "resources" to
consider treating it anyway....I had no insurance, I was a single mom
with sole financial, physical and emotional resonsibility for
supporting all four of us.

I have had a great, stable job with the same company for 13 years, now
with good benefits etc but even 10 years ago, I was still raising
three teenaged boys and had no financial support from other
sources...it would have been a really tough call for me to decide to
go ahead with treatment even 10 years ago, had I been faced with that
decision.

But by the time I WAS diagnosed, the kids were all out of high school
and on their own, and I had not only the medical coverage, seniority
and support of my employer, but I ALSO had a wonderful caring man in
my life who was there and helped me thru the year of treatment without
complaint. I was 1a and I cleared. Hooray. I think the stats are
higher than 50 % these days but I could be wrong, wouldn't be the
first time.

Be sure when you are making your decisions to treat now or not to
treat now, that you consider what your situation is now and what your
situation may be in the future. Not being negative, just realistic,
thru my own experineces.

Whatever you DO decide all the best of health to you in the future
going forward. May the Little Beasties not get you down if you choose
not to treat for now.   ~ Deb
Kyle J. - 09 Aug 2008 14:18 GMT
Well, you all pretty much said the same things I'm thinking :-)

Yeah, I've apparently had the bug for the last 25 years.  I'm fourty six
this year and I've got an "understanding" job and Kaiser coverage.  I don't
know how they work but I got the definate impression from the doctor that
based on the condition of my liver she thinks treatment now is just not
practical and thinks I should wait.  I don't know if that means Kaiser won't
support going forward or not if I pushed it.  I'm told that fifty percent
clear rate is the best I can hope for - yes, type 1.  The folks I've talked
to in the medical industry definately seem to think that there WILL be
better treatment in a couple of years. Probably better to wait.  I've got a
couple of teenagers but I'm married and don't expect that to change in this
lifetime.  I've actually been wanting to change jobs.  I'm pretty tired of
the way things are going at my job and I think the company is headed for a
crash in the next couple of years.  I was talking to sombody about another
job just before I found out about the dragon and backed down.  Now I'm
thinking I'll go hunting again.  In a couple of years I could be
reestablished and secure - or not.  Kind of a tough call there.

Kyle J.

> That IS great news, and we are all happy for you and always glad to
> hear {{good news}}
[quoted text clipped - 56 lines]
> going forward. May the Little Beasties not get you down if you choose
> not to treat for now.   ~ Deb
anonymousone - 09 Aug 2008 14:51 GMT
> Well, you all pretty much said the same things I'm thinking :-)
>
[quoted text clipped - 77 lines]
> > going forward. May the Little Beasties not get you down if you choose
> > not to treat for now.   ~ Deb

I was treated by Kaiser. They will treat you if you choose to go
forward.
TX-012 - 09 Aug 2008 19:46 GMT
>  Yeah, I've apparently had the bug for the last 25 years.  I'm fourty six
> this year and I've got an "understanding" job and Kaiser coverage.  I don't
> know how they work but I got the definate impression from the doctor that
> based on the condition of my liver she thinks treatment now is just not
> practical and thinks I should wait.  I don't know if that means Kaiser won't
> support going forward or not if I pushed it.<<

They will, almost certainly.

>> I'm told that fifty percent
> clear rate is the best I can hope for - yes, type 1.<<

Yes, probably, with 48 weeks of treatment. But how you respond in the
first 12 weeks is a great predictor of whether you will clear the
virus or not. If, after 12 weeks hep c is undetectable in your blood,
you have a much better than 50% chance of achieving an SVR, IIRC
(google for exact statistics).

 >>The folks I've talked
> to in the medical industry definately seem to think that there WILL be
> better treatment in a couple of years. Probably better to wait. <<

There will be better drugs. Soon, though predicting FDA approval is a
guessing game. You can perhaps even get into clinical teleprevir later
this year. But this does not mean it is necessarily better to wait.
The fact that you are healthy and stable, both jobwise and lifewise
are HUGE PLUSES. You may need to actually be on treatment to
completely appreciate how important this is. When the new protease
inhibitors are approved, treatment will still suck---in fact it will
suck even MORE---it will just suck for a shorter period of time for
many people, with a better chance of success.

>> I've got a
> couple of teenagers but I'm married and don't expect that to change in this
[quoted text clipped - 4 lines]
> thinking I'll go hunting again.  In a couple of years I could be
> reestablished and secure - or not.  Kind of a tough call there.<<

You can always start treatment, see how you respond, see how you feel,
and decide whether or not you wish to continue. I had genotype 1 &
started treatment 45 weeks ago, and my liver was probably no worse off
than yours---though I was already subtly symptomatic---and I am
younger than you (36) and have had the virus for fewer years than you
(10-11)...and despite the fact that I didn't respond optimally at
first (why I am doing 72 weeks) and have had absolutely awful side
effects (pain, exhaustion, depression, etc.) I have never regretted or
second guessed my decision to treat NOW rather than LATER. And I've
always given myself the mental option of stopping if things got too
dreadful...
Waterspider - 09 Aug 2008 20:37 GMT
> <snip> The folks I've talked to in the medical industry definately seem to
> think that there WILL be better treatment in a couple of years. Probably
> better to wait.

Kyle, do not consider this in your decision. People have died waiting for
"better treatment in a couple of years." If your liver is not seriously
damaged, you can wait. But don't kid yourself that you're waiting for a
better treatment; you're waiting until your liver damages forces you to
undertake whatever treatment is available. All the best,
Waterspider
anonymousone - 10 Aug 2008 16:27 GMT
> > <snip> The folks I've talked to in the medical industry definately seem to
> > think that there WILL be better treatment in a couple of years. Probably
[quoted text clipped - 6 lines]
> undertake whatever treatment is available. All the best,
> Waterspider

Some pretty good advice on this thread I think. Maybe better than your
Doctor's.
Kyle J. - 11 Aug 2008 13:56 GMT
Thanks for the advice.  I'll keep thinking about it for a while.  I know
from my doctor's point of view I would be waiting for a better treatment.
This was made plain.
Well nobody has been in all that big of a hurry since I found out I had this
stuff.  I suppose I'll be ok for a while longer.  I DON'T plan on waiting
untill my liver is a mess.

Thanks All!
Kyle J.

>> <snip> The folks I've talked to in the medical industry definately seem
>> to think that there WILL be better treatment in a couple of years.
[quoted text clipped - 6 lines]
> undertake whatever treatment is available. All the best,
> Waterspider
anonymousone - 12 Aug 2008 03:31 GMT
>     Thanks for the advice.  I'll keep thinking about it for a while.  I know
> from my doctor's point of view I would be waiting for a better treatment.
[quoted text clipped - 16 lines]
> > undertake whatever treatment is available. All the best,
> > Waterspider

Its probably cheaper for Kaiser if you wait.
anonymousone - 09 Aug 2008 04:32 GMT
> Hey all,
>     Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 8 lines]
>
> Kyle J.

"but I'm kind of in  a good position to deal with treatment right now
if there is such a thing
and have no idea what things will be like in a few years"

Thats something to be considered. Also your age.

Another thing you may not realize is that some people have very few
side effects from treatment. I was lucky enough to be one. During the
course of treatment (48 weeks) my only symptom really was some
tiredness due to anemia.

Your genotype would be very important also. If treatment is only 24
weeks thats something to consider also.

You might consider doing the first 12 weeks to see if you are a
responder. 12 weeks is not hard to take and you will be in a better
position to know then. If your not a responder there really is no
decision to make.

Whatever way you go, all the best.
Cactus Jammies - 09 Aug 2008 19:52 GMT
>> Hey all,
>>     Just got the results back from by biopsy.  Doc says I'm barely
[quoted text clipped - 32 lines]
>
> Whatever way you go, all the best.

>anonymous one
/////////////////////////////////////
Well, I am not about to advocate against treating asap.  Just to let
you know that without a followup biopsy, I am still at the outward
indications from ultrasound yesterday, successfully marking
time until Telapravir or something like it comes out of Gate Number
Three.  (For rodeo fans)
My position is that as a relapser with certain lasting effects and
because of the insurance situation, I cannot re-treat.  Not yet anyway.
The technician that took my ultrasonic pictures yesterday sees many,
many Hep C or Cirrhosis-blessed patients in a month.  She made
the remark after her and I had looked at and discussed those pictures
that I should keep on doing what I am doing.  I can live with that,
literally. What am I doing? 4/day dosages of 1tsp Turmeric powder,
2 caps of Milk Thistle and 2 caps of Reishi mushroom extract.  And
the low glycemic index diet, and anything to keep me from making
my liver involved in having to deal with excess adrenaline.  Low
stress everything.  Nothing loud, no arguments, low expectations
with a smile.  And glimpses of medatitive peace.  I was bx'd
with mild steatosis and 3/3 condition five years ago.

cheers and good luck
cactus jammies ===========
Paul - 16 Aug 2008 05:30 GMT
On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J."
<greyangelX1X@comcast.net>, in message ID
<iKmdnYUBseza3AHVnZ2dnUVZ_sninZ2d@comcast.com>, in the newsgroup
alt.support.hepatitis-c wrote:

>Hey all,
>    Just got the results back from by biopsy.  Doc says I'm barely showing
[quoted text clipped - 8 lines]
>
>Kyle J.

I'm a bit late in on this thread as I've been away.  Bear in mind hat
some medical conditions (such as certain types of heart problem) can
make treating more difficult.  You may not have such problems now but
you have no way of knowing what may happen later.  If you wait to
treat, you may have other issues later that prevent it.  Having said
that, as GreyH points out, there are many factors that can have an
effect on your decision including age, where you are in your life, the
risk of accidentally infecting others etc etc.
Waterspider - 16 Aug 2008 08:16 GMT
> On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J."
> <greyangelX1X@comcast.net>, in message ID
[quoted text clipped - 24 lines]
> effect on your decision including age, where you are in your life, the
> risk of accidentally infecting others etc etc.

"You may not have such problems now but you have no way of knowing what may
happen later."

Of course age would be a huge factor here, but, good point.
Kyle J. - 16 Aug 2008 17:04 GMT
>> I'm a bit late in on this thread as I've been away.  Bear in mind hat
>> some medical conditions (such as certain types of heart problem) can
[quoted text clipped - 9 lines]
>
> Of course age would be a huge factor here, but, good point.

Well it certain I'm not getting any younger but I tend to be pretty healthy
and live pretty healthy and the biopsy supports that I seem to be doing the
right things.  I'm going to give it some time.  I'm increasingly convinced
that I need to get into a different job and this would give me some leeway
to go looking.

Kyle J.
ekimnnud@gmail.com - 23 Aug 2008 15:17 GMT
On Aug 15, 11:30 pm, Paul <dontspa...@westgreen.freeserve.co.uk>
wrote:
> On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J."
> <greyangel...@comcast.net>, in message ID
[quoted text clipped - 22 lines]
> effect on your decision including age, where you are in your life, the
> risk of accidentally infecting others etc etc.

Hi- I'm Mike D. Just Diagnosed w/ Hep C. Met w/ GI Specialist (a Dr.
ROY, Excellent!!! ,at evanston Hosp. Evanston,IL Scheduled for liver
biopsy,labs. Want aggressive Tx Plan.
The news FREAKED ME OUT!!  Don't fit the profiles, Wikipedia pie chart
shows 10% "don't know". Friend in Austin, Tx says" Everyone" down
there has it. ( i lived in Austin,TX 1978-1983) Am considering own
theory, any and all info Appreciated!!!
Let's beat this MFer!!!    contact Mike D. email: ekimnnud@gmail.com,
Tel. 847 657 7533   Thanks!
 
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