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Medical Forum / Diseases and Disorders / Hepatitis / February 2004

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Keith - 26 Feb 2004 15:30 GMT
Hey, remember me? I've been so bummed by how long it took doctors to
do all my pre-treatment tests that I haven't written for a while.

Here's the story. My liver doc, who's allegedly a really great doctor
(the head of hep c research at a major hospital in NYC) is telling me
not to do the treatment.

From visiting this group and reading the messages, I had decided that
treatment was the only way to go, no matter what. But the biopsy
showed only an inflamed liver, no fibrosis/cirrhosis. The doc is
saying I may never have to be treated, given the slow progression of
liver disease. So he says I should forget about it.

When I said no, I wanted to do the treatment, he tried scare tactics
on me, saying "people die on this treatment!" and "you could have
heart problems for the rest of your life from treatment."

I feel like a yo-yo. I've been geared up to start treatment from the
outset, and you know how that affects your life view. I've been
depressed about it, but my determination to do the treatment never
subsided.

Now the doc, who's a friend of my brother who's also a big-cheese doc,
called my brother and now my brother's telling me I'd be crazy to do
the treatment.

This is not how I figured things would work out. What do you think,
people? What should I do here?

Keith

PS: Is there anything the doc could give me that would help the
inflamed liver? Because it hurts every day.
Alias - 26 Feb 2004 15:33 GMT
"Keith"  escribi?

> Hey, remember me? I've been so bummed by how long it took doctors to
> do all my pre-treatment tests that I haven't written for a while.
[quoted text clipped - 29 lines]
> PS: Is there anything the doc could give me that would help the
> inflamed liver? Because it hurts every day.

Take Milk Thistle. That will remove the pain. Listen to your docs. No one
here is a doctor and no one here has seen your biopsy results. You will
probably die with Hep C, not because of it.

Alias
Paul - 26 Feb 2004 16:31 GMT
On Thu, 26 Feb 2004 15:30:28 GMT, Keith <really@mostly.com>, in
message ID <dr3s30ln2gm1mkg47cfahnn227l97arsne@4ax.com>, in the
newsgroup alt.support.hepatitis-c wrote:

>When I said no, I wanted to do the treatment, he tried scare tactics
>on me, saying "people die on this treatment!" and "you could have
[quoted text clipped - 4 lines]
>depressed about it, but my determination to do the treatment never
>subsided.

Well the scare tactics are not just tactics really.  Interferon can
cause permanent damage.  Heart problems, thyroid problems, arthritic
problems, diabetes and renal failure are all possible consequences of
interferon tx.  They are the exception rather than the rule but it is
better to make your decisions with full knowledge.  I've known perhaps
15 people to do this tx.  All but one cleared the virus.  One died
from renal failure.  The one who didn't clear did a non-pegylated
interferon a few years ago and has just finished a re-treatment with
pegasys - results not yet known.
I can understand your feelings.  I would not have liked having this
virus kicking around inside me for many years either.
I don't know your age or your genotype but they could have some
bearing on your doc's advice.
I hope you make whatever decision is right for you.

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Paul

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Russ - 26 Feb 2004 16:38 GMT
Knowing what I know now, if I had no damage at all to my liver, I may be
prone to wait for something a bit less harsh.

I did have some mild liver damage, stage 1 fibrosis. My BCLD said I could
wait also. But there were other side affects, fatigue, an over all feeling
of not being "well". I also had joint pains that have eased since starting
treatment.

My age was also a factor, I'm 48. I didn't want to have to do this when I
was older and possibly with other health issues.

Another factor was my finances were all in order. I paid off my credit
cards, had plenty in savings and made sure I was eligible for temporary
disability. Avoiding stress is essential in my opinion.

The interferon also killed my thyroid. That was a real mess for me.

It's a tough call, but if your liver is not damaged, and you "feel" ok, I
don't think there is nothing wrong with waiting for something better.

Good luck.

Signature

Russ Tanner
Palmer, Alaska
email: remove NOSPAM
http://www.tannersacre.com

> Hey, remember me? I've been so bummed by how long it took doctors to
> do all my pre-treatment tests that I haven't written for a while.
[quoted text clipped - 29 lines]
> PS: Is there anything the doc could give me that would help the
> inflamed liver? Because it hurts every day.
Thomas Wagner - 26 Feb 2004 16:46 GMT
>Here's the story. My liver doc, who's allegedly a really great doctor
>(the head of hep c research at a major hospital in NYC) is telling me
[quoted text clipped - 5 lines]
>saying I may never have to be treated, given the slow progression of
>liver disease. So he says I should forget about it.

There's still a lot of controversy among experts about this question -
does it make sense to treat even if there is no liver damage? A number
of experts think so, but at least the same number disagree. Here's what
the NIH Consensus Statement says:

"Progression to cirrhosis is likely to be slow in patients who have
persistent ALT elevations but no fibrosis and minimal necroinflammatory
changes. These patients may not need treatment and should be monitored
periodically. However, decisions to treat such patients should be
individualized and may be based on the patient's desire to eliminate the
HCV infection or unwillingness to undergo subsequent liver biopsies to
assess disease progression."
http://consensus.nih.gov/cons/116/091202116cdc_statement.htm#4

>When I said no, I wanted to do the treatment, he tried scare tactics
>on me, saying "people die on this treatment!" and "you could have
>heart problems for the rest of your life from treatment."

And you could be hit by a truck just when you have successfully
completed treatment. Yes, there have been deaths (but extremely few),
and yes, long-term problems can be triggered by treatment (but rarely,
and heart problems are even rarer). Scare tactics indeed.

However, the answers in your case aren't clear-cut. Treatment does
indeed bring its own risks, and the rewards may not be worth those
risks. It may make more sense to do nothing other than trying to live
healthy for a few years, hoping for treatments with fewer side effects.
There's a lot of research activity that might bring results in 5 years
or so, which isn't a long time to wait if you have no damage now.

>I feel like a yo-yo. I've been geared up to start treatment from the
>outset, and you know how that affects your life view. I've been
>depressed about it, but my determination to do the treatment never
>subsided.

Then you should insist on a second opinion, and see a doctor who isn't
connected to your current one. Apart from talking about it here, get as
much professional input as you can.

>PS: Is there anything the doc could give me that would help the
>inflamed liver? Because it hurts every day.

Milk thistle has been suggested and is worth a try. Did your doc have
any comment on your pain, or did he just ignore it? If the latter, you
should change doctors ASAP.

Thomas
Signature

To reach me, complete my last name in the address.

Professeur Von TwoSteps esq. - 27 Feb 2004 07:22 GMT
From :  Thomas Wagner <tomw@capecod.com>
Message-ID : <d77s30p17ru0g1msiiom9usttfbhnmf1b3@4ax.com>



>However, the answers in your case aren't clear-cut

Obviously so *Dr Thomas Desgraciado*, 'caus you are not a qualified
medical practitioner

Stop playing *doctors* imbecile

Professeur Von TwoSteps
If f(x)=y, x is the independent variable
Thip - 26 Feb 2004 18:10 GMT
| Hey, remember me? I've been so bummed by how long it took doctors to
| do all my pre-treatment tests that I haven't written for a while.
[quoted text clipped - 26 lines]
|
| Keith

I'd get a second opinion from a doctor who isn't acquainted with any family
members.  Tell him what the Big Cheese head doctor said and that you're not
comfortable with it or the pressure you're under regarding this decision
(which is yours to make, not your brother's or the doctor's).  Obviously you
have time to think this through, but being a Big Cheese *doesn't* make him
right.  I would very much resent being pushed around like that.
Keith - 26 Feb 2004 18:47 GMT
Thanks everyone. This does help. I kind of expected everyone to
scream, "Do the treatment!" Just the fact that you didn't says a lot.

By the way, I was so sad to read about people not clearing. I imagine
it's almost too much to bear, after completing the meds. I wish I
could say something to make it all better.

Thanks again. I'll let you know what I decide how to handle this.
Keith
CHEZ - 26 Feb 2004 20:31 GMT
First off how old are you? I would get a second or third opinion second off.
I have had high blood pressure since being off tx, so I am wondering if it
was the tx. I am 43 years old and my Internist told me it was just my age
and high blood pressure ran in the family, but still I wonder. I am however,
HCV free over a year post treatment, so for me it was worth it.

Good luck!
Chez
> Hey, remember me? I've been so bummed by how long it took doctors to
> do all my pre-treatment tests that I haven't written for a while.
[quoted text clipped - 29 lines]
> PS: Is there anything the doc could give me that would help the
> inflamed liver? Because it hurts every day.
Maryem09 - 26 Feb 2004 21:48 GMT
>Now the doc, who's a friend of my brother who's also a big-cheese doc,
>called my brother and now my brother's telling me I'd be crazy to do
>the treatment.

Keith,

The main fact here is your doctor discussed your case with your brother the
doc, who in turn discussed this with you.
This is a violation of your rights and would certainly discuss this with both
of them. (being that it is your brother)

Get yourself another doctor, and be sure you state that you don't want him to
consult your brother on your case. Get another opinion or even a third to
balance it out. Then decide.

Best of Luck,
Mary
Jeff Tamblyn - 26 Feb 2004 21:50 GMT
I say-stop drinking and don't worry about not doing treatment. It really
sucks.
elmoemerson@webtv.net - 27 Feb 2004 12:02 GMT
f.ck the liver specialist!!  What does he know?  
Elmo

p.s.  The tx can also make you sarcastic as hell.  Count your blessings
you don't need to take combo drugs right now and get on with your life.  

http://community.webtv.net/elmoemerson/DocElmosHepFile
Russ - 27 Feb 2004 16:09 GMT
hahaa, I told Karen I had the social skills of an ax murderer.. no doubt
these drugs really f.ck up your head.

Signature

Russ Tanner
Palmer, Alaska
email: remove NOSPAM
http://www.tannersacre.com

> f.ck the liver specialist!!  What does he know?
> Elmo
[quoted text clipped - 3 lines]
>
> http://community.webtv.net/elmoemerson/DocElmosHepFile
elmoemerson@webtv.net - 28 Feb 2004 18:29 GMT
What a ya say we go grizzly bear spanking tonight?  Actually, axe
murderers generally have excellent social skills not to mention a razor
sharp sense of humor.  They also save alot of money not having to
purchase meat at the grocery store.  
Elmo
/////////////////
hahaa, I told Karen I had the social skills of an ax murderer.. no doubt
these drugs really f.ck up your head.
Signature

Russ Tanner
Palmer, Alaska
email: remove NOSPAM
http://www.tannersacre.com
<elmoemerson@webtv.net> wrote in message
news:19307-403F31EB-12@storefull-3256.bay.webtv.net...
f.ck the liver specialist!! What does he know?
Elmo
p.s. The tx can also make you sarcastic as hell. Count your blessings
you don't need to take combo drugs right now and get on with your life.
http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/DocElmosHepFile

 
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