NOT treating....What questions to ask

[dammitjanet]

Hello everyone.  I've been away for awhile, but like the proverbial bad penny, I'm back!

I've seen many threads here about questions to ask pre-tx.  I'm not planning to treat at this time, but have an appt next Tues with Dr Shiffman at MCV, the leading hepatologist in my area.  It took me four months to get this appt, so I want to be prepared.  I was dx with Hep-C in June 2005.  My overall health is good and I'm not currently suffering any extra-hepatic symptoms.  Unless my condition takes a turn for the worse, I prefer to wait on tx and watch the development of the newer drugs currently in clinical trials, hoping for an easier, more effective, course of tx.  When I asked my GI, "If I decide not to treat at this time, what is the protocol?", he looked at me as if I were stupid and said, "There is no protocol".  Maybe I didn't word the question correctly, but I certainly was not satisfied with the answer!

Here are my stats:

55 y/o F
Geno 1b
VL 1,590,000 (6/05)
AST 36, ALT 45, AlkP 161  (6/05)
Bx (8/05) "Moderate activity (grade 3 out of 4) without increased fibrosis (stage 1 out of 4)."

So, what questions should I ask the renowned Dr Shiffman?

Thanks for your help.

DJ

[NYgirl]

Can I ask what the doctor has advised since you have decided not to treat to get the inflammation down in your liver?  Grade 3 is pretty high so he must have some sort of plan - and I was curious to find out what it might be (always looking for anything that can help my own liver you know!)

What were the factors (if you don't mind me asking) that decided for you to not treat as a 1B with  high viral load.  Are you waiting for the new meds?

Just curious because I remember you posting all the time earlier and I've totally forgotten everything except what you just wrote!  :)

[dammitjanet]

Hi Deb.  My GI doc didn't give me any advice at all.  He was pretty much a treat or don't treat doc.  I told him I was taking milk thistle; he didn't think it would do me any good, but it wouldn't harm me either.  I just didn't care for his attitude, saw a lot of inefficiency in the office support staff, and decided I needed to talk to a specialist.  The main reason I'm not tx'ing now is that I feel that my low level of fibrosis gives me some "wiggle-room" to wait for kinder, gentler, hopefully more effective tx.  With the odds for SVR at 50-60% for geno 1b, I'm just not willing to undergo the rigors of INF/Riba therapy (though I greatly admire those who do, and pray for their success & SVR).  Through research & comments from this board, I have greatly enhanced my supplement regimen.  I am currently taking Healthy Liver Version 2, which contains the anti-oxidants and milk thistle as described in the "anti-oxidant studies".  I also take many other supplements, but no chinese herbs.  Of course, I can't know if this is helping to reduce inflammation without another biopsy or fibrosure/fibroscan tests.  All I know is that I feel good, have fewer joint/muscle aches, good physical stamina, and good mental health.  Of course, I quit drinking, and I exercise regularly.  Just hoping for the best, and that I can hang in there a few more years.

You seem to be doing well on your tx.  I know it's been difficult for you at times, but you seem to have an attitude that can defeat the toughest adversity.  Keep up the good work!

DJ

[honey11]

Hi Janet,,,,I think if I was in your shoes and deciding to hold off.  I would want to know how many current Hep patients your dr is seeing.  What are the statistics for these following the tx,,,age being one of them.  What does he think about you holding off for better meds?  If you are at stage 3,,,What does he feel that you actually have as far as some wiggle room?  You are very smart to get all your ducks in a row and discuss which route is best for you....Good Luck!

[vegas777]

I forgot to ask you in the email, did you have a blood draw since you starting taking the new liver supplements?

[NYgirl]

Got ya makes sense to me!  :)  I knew there was something somewhere that I just couldn't remember or something. I'm so darned Fogged out all the time I don't remember my own stuff most of the time.

I take plenty of anti-oxidants myself....thinking they are good for the whole body.  If I could get down to UND and kill these last stubborn virus's (guess they are like me a bit) it would make my day.  :)

If I wasn't a 2/2 I might have waited myself but as a stage 2 realized I just didn't have that option.  Now i"m some sort of crazy virus killer...and I want to try EVERYTHING to smash them to pieces!  Nothing is bothering me anymore except killing off those last couple for good!

It's GREAT to hear from you again.  I hope you are around more often!

[dammitjanet]

Beth - I have stayed away from the herbs, largely because of what I have read on this board and your experience only reinforced that for me.  The Healthy Liver is mostly vitamins and minerals, but does include milk thistle extract, which from everything I've read doesn't have any adverse effects on the liver.  I admittedly have been operating this vehicle without a pilot lately, but hope to get some feedback from the dr next week.

Chev - Good to see you and hope you're doing well.  I've been behind in my correspondence lately - just too busy during the holidays.  Sorry about the Colts - I was rooting for them!!

Mo - I wish I had someone to take with me.  My husband travels on business, I have no other family here, and haven't told any of my friends about my dx.  Guess I'll just have to be very diligent listening and taking notes.  Maybe I could sneak a small tape recorder in my purse!! :)

DJ