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

[friole]

On walking -- never was 5 miles, but I was good with 3 miles a day, about 4 days a week and did that all through the first 5 months of tx.  Then we had a cold snap around the first of December and I mysteriously quit walking, even tho the rest of the month had temps in the 70's.  I started back up after the 1st of Jan, but only doing 2 miles.  I find my excercise motivation lacking.  I have always thought that excercise has to be an obligation, not an option, but lately I make way too many excuses ...........and talk about slow.  I mean, I am strolling, no power walking.  STill, it is something.

I have been non detectible since week 20 (now on week 27) and have been feeling fairly good.  I still am working full time, but do now want to do anything else, after I get home.  

Glad you are well,
Kathy

[Moeymitt]

Hi, No doc said I do not have fatty liver. Also on that blood test my WBC 4.1, RDW 10, monocytes 12.5. I don't know what that all means but will talk with them when I retest thurs. I will let you know.
janet...where do you live?? I can go with you if you are in the Seattle area, I live in Port Angeles.........Mo

[dammitjanet]

Mo - You're very sweet to offer, but we're a continent away from each other.  I'm in Richmond, VA.  But thanks for the very kind offer.  I hope you get an answer soon on your rising enzyme levels.  

DJ

[dammitjanet]

Hi Kathy!  How are you doing these days?  Still doing your 3 miles a day? (Or was it 5 miles?)  I haven't been on the board much lately, so have a lot of catching up to do.  Hope you are doing well and that your sides are still manageable.

Mom is doing very well, thanks for asking.  She got her stitches out yesterday and is now in a short glove-like cast, so she can drive and hopefully fix her hair.  If she can do those two things, she'll be happy for awhile.  I told her she couldn't start bowling yet, and she actually agreed with me!  As for the nickname, I was probably more tempted to use it on HER.  I swear, the older she gets, the more stubborn she gets!  Hope that's not an omen for MY future!  :)

I'm both looking forward to and dreading my appt next week.  But, I need to get established with a good hep dr, get some info, and make a decision whether to tx now or wait.  I seem to have a tendency toward inflammatory conditions, and it runs in my family.  I'm RH+, but except for a long bout with severe neck pain a few years ago, I have been relatively free of arthritic problems.  (knock wood)  I'll let ya'll know how the appt goes.  

Good to hear from you.  Hope your tx is progressing smoothly.  I can remember - have you achieved ND yet?

DJ

[friole]

Glad to see you posting.  I was wondering what you had decided.  You sound pretty prepared for the meeting.  I too make a list of what I want to ask each visit.  If I don't do that I get intimidated by the doc and forget everything.  I hope you get a second opinion on that biopsy.  You sure have a lot of inflamation for such a small amount of scaring (fibrosis)

I was going to ask about the bowling.  The holidays just nearly did me in - family and food and house guests -- I was in pretty good spirits about all the family events, but when they all went bowling I bowed out.  That just seemed to be a little more than tx would allow me to do.  Maybe later...

Sorry about your mom.  I hope she is recovering.  Did you hear a lot of ye old family nick name?  Hey Beamish - I too thought DJ's name was out of Rocky Horror, but no such thing -- it is a treasured family nickname.LOL

good luck at the meeting
frijole

[dammitjanet]

I called the lab last week and they said they would send them.  No problem.  Will follow up with them tomorrow to make sure they sent ALL of them.

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

[vegas777]

Ohh I thought you said you were taking NU Liver, my mistake so sawwy - don't whoop me I bruise easy  hehehe

[dammitjanet]

I could never harm a hair on your silly wittle head!  I looked at NuLiver and decided that it was not a good idea.  The instructions from the drs office said to bring all medications and vitamins in their bottles.  I would take me a small suitcase to do that!  Instead, since I order most of my supplements online, I have printed off the list of ingredients, and done a spreadsheet listing everything I take and totalling the amount of each ingredient from all the supplements. Sheeesh! Hope that's good enough.

DJ

[vegas777]

yeah I did the same thing, and did you get your bx slides?  I had a heck of a time getting mine, they basically siad it was the property of the Hospital, had to use my old mans's influence again  grrrrrrrrrrr  lol

[dammitjanet]

Awwwwwww - I was really looking forward to that shopping trip!  But, my husband thanks you for letting him off the hook on that one!!

BB - Sounds good.  Though I would never make it on Dancing With The Stars, I could probably manage the TimeWarp!

DJ

[vegas777]

I am sure it is this country that does things different and you won't have any trouble getting yours...

[NYgirl]

WOW that is some increase in enzymes - I too would want a recount and if they are right I'd want to know what is going on all of a sudden that my liver is getting zonked off like it is!

I started in the 200s and went straight down as soon as I started treatment to only the 20s and teens.

If they went up like that...I'd want to know why TOO!

BEST of luck with that!

[dammitjanet]

Honey:  Thanks for the comments & good wishes.  Dr Shiffman specializes in tx'ing HCV, works extensively with relapsers and non-responders, and is head of the liver transplant team at MCV.  Since this is a medical college, I don't expect to see Shiffman at every appt, but hopefully will get him for the initial consult.

Veggie:  Haven't seen a dr or had a blood draw since my bx in August.  Last time I was at the Vitamin Shoppe they gave me a free copy of "The Makers Diet".  The most interesting part of the book was the chapter "Ten Things That Can Kill You".  Number 10:  See your doctor annually.

NYGirl:  Again, I must tell you how I admire your courage and tenacity.  I know you will slay the dragon!!

[Forseegood]

Hi, just wanted to say hi, haven't seen you in an eon! Glad that youre feeling well! please let us know how youre visits go, etc. and what you've been up to, it's nice to see you again. be well.

[dammitjanet]

Hi Angie.  Good to hear from you too!  I've just been real busy lately - no time to post, but I do browse thru the comments, just to keep current with people & issues.  Just returned from 3 weeks in KS with my mother.  She fell on Christmas day and broke her wrist, so she needed some help for a while.  She's doing better now and should get a new glove-type support cast today, which should give her more flexibility.  She just about drove me crazy (she IS my mother!), but I survived and am currently awaiting my appointment to sainthood!  But, the trip wasn't all bad. I bought a new bowling ball, took some lessons, and bolwed a 738 set - games of 266, 225, and 247.  I now have the family bowling title, beating out my brother and even my Dad!  

I'll let ya'll know how the appt goes next week.  Still working on organizing all this paper so I can appear intelligent and informed!

Take care of yourself!

DJ

[vegas777]

I would still be taking the chinese herbs if I hadn't had the blood draw....I highly reccommend it on a quarterly basis to anyone who takes any kind of vitamins and herbs that is HCV active w/o tx....But, like I said to Jim a bit ago, I'm a dip what'da I know  hehehe

[dammitjanet]

I hope they do a blood draw next week.  I'm interested in seeing the results.

[vegas777]

as you know I had the same enzymes as you and when I got the results back on the last draw I almost fell on the floor, it had almost tripled...and I know it had to be from the herbs cuz my enzymes were at the same levels for almost 5 years..also, not sure if you remember but the ND I saw told me to NOT take the Nu-Liver, she said there was an agent in there that was not liver friendly, be careful my freind, it's a scary thing....