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Medical Forum / Diseases and Disorders / Hepatitis / November 2004

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My last post concerning biopsy - should we treat?

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Wendela - 17 Nov 2004 16:47 GMT
Hi,
In my last post, I forgot to mention that his biopsy was between 1 and
2, although the first pathologist who was not connected with the liver
center said it was a 1.

Also, the China trip would be in 1 to 1.5 years from now, should his
company get the contract.
Russ - 17 Nov 2004 17:19 GMT
Treatment for geno type 1a is 48 weeks. Some people do ok on the treatment,
some not so good and I guess a majority fall somewhere in-between. At the
clinic I go to I had heard 35% of their patients quit the chemo at some
point. It's doable but can be a sumbitch to finish. Take some time and make
an informed decision. Maybe get a second opinion from another doctor.

The decision to treat was one I pondered on for 1 1/2 years from diagnosis
to start of treatment. Even though my liver biopsy results were Stage 1,
minimal inflammation, I was having lot's of fatigue and joint pains. The
joint pains went away within 6 weeks of starting the peg/riba. I have had
some return of joint pains, but how much of that is wear and tear from work
and getting older (I'm 49) I don't know.

Your bf's LFT's being high is a red flag. I would think some meds or
procedures could induce higher LFTs, but not from a script of pain pills.
The vaccines for A and B? Antibiotics? Good question but I don't know.

Signature

Russ

Visit Alaska @ http://www.tannersacre.com

> Hi,
> In my last post, I forgot to mention that his biopsy was between 1 and
[quoted text clipped - 3 lines]
> Also, the China trip would be in 1 to 1.5 years from now, should his
> company get the contract.
Wendela - 18 Nov 2004 02:05 GMT
Russ,
Thank you for the reply. We've tried in vain to contact the liver
clinic about the possibility of the vaccines or antibiotics raising
the enzymes. It would be interesting to know, anyhow. Yes, 48 weeks is
the treatment time. I worry because the University has so many
patients, it takes them forever to get back to you every time there is
a question. His M.D. is kind of famous and well published in the
field, but more important than that, he's a great human being. If I
ever wanted for anyone to break bad news to me, I would want it to be
him. The 35% rate is really high :(. Even with Procrit? Hopefully, the
health insurance  will cover this. As a side comment, many people in
the support group read the conference proceedings from the big
conference held in Boston. If I find the URL to it, I'll post it.
-Wendy

> Treatment for geno type 1a is 48 weeks. Some people do ok on the treatment,
> some not so good and I guess a majority fall somewhere in-between. At the
[quoted text clipped - 20 lines]
> > Also, the China trip would be in 1 to 1.5 years from now, should his
> > company get the contract.
Don - 18 Nov 2004 03:35 GMT
>Russ,
>Thank you for the reply. We've tried in vain to contact the liver
[quoted text clipped - 10 lines]
>conference held in Boston. If I find the URL to it, I'll post it.
>-Wendy

Having a good doctor makes a big difference so that sounds like a big
plus.  It's very important to have someone with experience in treating
this disease I think.  

It can be very difficult to decide whether to seek treatment because
of the many uncertainties.   Medical history must be reviewed and a
good health evaluation done.

Some things to consider:

Treatment tends to become more difficult, problematic, and less
successful as patients get older.  

I don't think the progression of the disease can be accurately
predicted although it is generally believed to be slow.  I've heard of
people deciding to wait but have the disease progress faster than
expected.

Treatment can be difficult and may not be successful.  That is why
genotype can be important as 2/3 types have much better success rates
on shorter treatment.

It is possible to not only be unsuccessful in tx but to come out of it
in worse shape than when you went in.

Some people need more time off than others.  Some find it necessary to
stop working altogether while others never miss a day.  

------
Was that conference held 10/29 - 11/2 in Boston?  I noticed there was
one held there then.  Abstracts of the 55th Annual Meeting of the
American Society for the Study of Liver Diseases (55th AASLD), October
29 - November 2, 2004, Boston MA.

http://www.hivandhepatitis.com/2004icr/aasld/main.html

--------

Good luck to you and your BF.  I sure things will go your way.

Don

 
Wendela - 18 Nov 2004 17:26 GMT
Don,
Thanks for the info on the conference. That must be it, since it was
recent.

We did decide to treat with the Pegasys/Riba - what a joy he is in
for.

His doctor was referring to some factors to predict what the damage is
and when to treat, aside from the biopsy. He indicated that if he knew
how my BF got the disease, he could better predict the progression. My
BF had 5 surgeries in his teens, and dental operations, so it could be
anything.

This contradicts what Thomas said and what I thought was basic
accepted knowledge of the disease.  His MD at University of
Pittsburgh, and previously 2 other locations has been a hepatologist
for years. Maybe I misunderstood. I wish I taped the conversation.
Anyhow, seems the clinic is so big, you deal with a nurse practioner
most of the time, and it takes her a day or so to reply to your call.
This really sucks if you need help. They will not return your call
even if it is an emergency. Too bad there seems to be such a shortage
of hepatologists, otherwise, we'd have more choices. And there's the
worry that the University will dictate some of the treatment methods
to an extent, because perhaps you will be part of a longitudinal
study. I'm very paranoid, so don't mind me.  Well, enough of my
running at the mouth for now. Hope my hyperness isn't making everyone
as crazy as I feel.  Wendy

> >Russ,
> >Thank you for the reply. We've tried in vain to contact the liver
[quoted text clipped - 52 lines]
>
> Don
Don - 18 Nov 2004 20:24 GMT
>Don,
>Thanks for the info on the conference. That must be it, since it was
[quoted text clipped - 23 lines]
>running at the mouth for now. Hope my hyperness isn't making everyone
>as crazy as I feel.  Wendy

It's understandable to be wary about getting into something like this.
I certainly understand.  Been there.   It is also not uncommon to deal
primarily with a nurse practitioner or physician's assistant.  I deal
primarily with a PA myself which doesn't seem to be a problem because
treatment is fairly standard.  A doctor is available if problems
develop.   However, I always get a same day call back even in
nonemergency situations usually within 2 hours.  I think it will be ok
though.  I assume he will have his monthly checkups with bloodwork to
monitor how things are proceeding.  That's crucial.  You can probably
get alot of answers and information about coping with treatment
through this support group.  Try to relax.  Settle down a bit.  TX is
doable.  

Don
Russ - 18 Nov 2004 17:21 GMT
I think as far as the LFT's (Liver Function Test's), repeated testing and
continued high readings will rule out any other possible short term causes.

I also think as for completing the treatment, some clinics will see better
results just because they treat ALL the side affects in a more proficient
manor.

For instance, a family member of mine had to stop treatment because of
thyroid failure. His "Big Chief Liver Doc" or BCLD, when test's revealed a
thyroid problem, sent him to his regular doctor to be treated for that!! By
the time he got in to see his regular doctor his thyroid functions were so
far out of whack he had to stop.

My thyroid went tit's up too, but my BCLD was right on the ball, got me
started on Synthroid right away, but more important treated the symptoms of
not only the chemo but the thyroiditis. A bad thyroid can really make you
sick. I was prescribed Atenolol for my heart rate, it was way to fast, over
100 bpm at rest. Anti-nausea meds, narcotic pain meds for the relentless
migraine headaches, sleep aids, anti-anxiety meds. I never needed "blood
boosters" for low red/white blood counts, even though they were low.

In short looking back, I can see how stopping treatment could be a real
option if the side affects are not treated. There are some doctors out there
that flat refuse to prescribe medicines like sleep or narcotics though I
think that may be improving. If you decide to treat I would ask your BCLD up
front about side affects and how they will be treated. Not everyone has
horrible side affects, but some of us have. Mine were right up there. Be
ready for the possibility of not working. I made it about 3 months into
treatment before I had to stop working. There was just no way I could work.
But it only took 3 weeks for me to get back to work after treatment. I
bounced right back fairly fast.

Signature

Russ

Visit Alaska @ http://www.tannersacre.com

> Russ,
> Thank you for the reply. We've tried in vain to contact the liver
[quoted text clipped - 35 lines]
> > > Also, the China trip would be in 1 to 1.5 years from now, should his
> > > company get the contract.
Wendela - 19 Nov 2004 03:08 GMT
Russ,
If you could look through your computer, you would see me cracking up
over the "BCLD" reference. Larry's doctor is probably the chief also.
I talked with his regular doctor today who is less than enthusiastic
about having to pick up the slack for his BCLD. Also, I found out it
was the nurse practitioner who is encouraging him to treat now. I'm
sorry but I've had horrible experiences with "certified nurse
practitioners". (CNP) Should be "see not patients" I've seen 2
unnecessary deaths occur as the result of their lack of any real
medical expertise. because  An exception to this would be for a couple
I've seen at a dermatologists office who were very good at what they
did as far as I could tell. Otherwise, I normally insist that I see
the doctor. Making matters worse the CNP just recently got her job
there. Oh vey! Really gives you that warm feeing. Anyhow, Larry's
regular doctor said he hasn't treated patients taking Intereron/Riba
before, and he'll need to contact the BCLD to explain to him what to
look for. Wonder if he'll wait 20 minutes on the phone with the
message "call your emergency department if this is an emergency or
leave a message with the doctor's CNP".

Anyhow, sorry you have had to suffer with the Chemo treatment at the
same time. So, are you free of the virus??  You said 3 months and you
stopped working...did you stop for the other 9 too? Are you okay now?

I'll review the board and see what your situation is. As for the
narcotic type of medicine, this is my specialty as I've suffered with
depressions and anxiety for years and now with Chronic Fatigue.  If I
had to take any meds, I try the Provigal (spell?) or Wellbutrin and
the Klonopin. I could not take the SSRIs though.

Well, can't say I'm in the exact situation, but good luck fellow
sufferers. One day, or one hour at a time as they say in the 12 step
programs.

> I think as far as the LFT's (Liver Function Test's), repeated testing and
> continued high readings will rule out any other possible short term causes.
[quoted text clipped - 27 lines]
> But it only took 3 weeks for me to get back to work after treatment. I
> bounced right back fairly fast.
elmoemerson@webtv.net - 19 Nov 2004 04:00 GMT
Oh, gosh.  Not another one.  We just got rid of the other one.  hehe
damn!
Elmo

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

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