Saw The Doc - Have Some Answers

[FlGuy]

Went to see doc#3, one of those

[tulsatime]

cuteus, Thanks for those site. found some good stuff in there!

Kalio check this out:

http://www.natap.org/2006/DDW/DDW_27.htm

Does anyone know how much riba would be wieght based if I am 165lbs everything I read says kg. not lbs.

[Algernon]

You have a lot in your favor (in terms of the variables that predict SVR)--especially having an EVR at week 4 and having minimal damage.  I don't know your ht/wt but weight-based riba also helps.  Lots of folks here can calculate that for you if you provide your height/weight.

More is not always better.  These drugs are hard on your body.  

I'm also a 3a.  Had a high viral load (16.5 million) and moderate steatosis.  Don't yet know the final verdict but I was clear at 5 weeks post TX (had EVR at 4 weeks, was on a fairly high dose of Riba just because I happen to be small and got the standard dose).

I'm hoping for the best and didn't feel like I could handle another day of TX.  Good luck to you!!

[Snookmiester]

Just so you know, all that Pegasys/copeg advertisment in office is new..That was a VERY pro Scherring establishment prior. I was completely suprised to see the Roche posters in the exam rooms, as during my prior visits everything was soooo pro Scherring..
Makes ya wonder what is proving more effective with time?

[cuteus]

as good an omen as any!
I would have thought EXACTLY the same thing!


moving to the thread above after this.

[FlGuy]

You point is the crux of my decision. In addition, if I qualify for vx and if it starts in the reasonable future, it also means that I will have to schelpp to the trial site fairly often (see prior threads for those already in vx for the process) and those trips are not at all convienient for me.  Almost wish the doc had found some reason I would be excluded from vx because I am physically and emotionally ready to re-start combo now and the timing for work and family stuff is about as good as it's gonna get. In fact, I thought I had seen a 'sign' to go for combo.  When I registered at the clinic I had to go thru a sign-in process that all patients, for whatever clinic they were going to had to go through whether is was for hepatology, spine clinic, cardio etc. When I signed the first of many forms the clerk gave me a pen to use.  It was a 'Pegasys/Copegus' logo pen. Almost eerie. I pocketed the pen.

[Paris47]

Yes that was me that went to csny
what a show,
what a feeling
I had total strangers take my picture,
they felt I was inspiring, they didn't know
who I was or that I was sick,
which I was...bad...
but the music started, the brain waves kicked in
and I was 5 1\2 months of energy UP UP UP
and oh my goodness, almost got removed for having a
good time
just wanted to dance with out being in the others way...
can't seem to dance in the aisle,
or rush the stage...but get ready to cry,
the show is more moving that you could ever imagine!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[cuteus]

http://69.18.146.5/body.cfm?id=4589

look where he got his hepatology training, sounds familiar?

I also had liverdisease.com tend to my initial month of tx.

YOU ARE NOT RELAPSING so stop that list! but I owe you SVR dinner/lunch at the Lobster Roll, their tuna steak is to die for!

[roaming]

the only place we have for expert opinion seems to be the univ of miami. Do you know anything about the trail dr. in bradington (?) or gainsville. They never seem to be mentioned.

[Snookmiester]

Hey, glad to hear you found the place, hope my directions helped.. From what I've heard out of there, the coordinator for the trials, is leaving the group.. Might want to call her and get specifics, and ask who will be taking her place. She is the lady who adminstered the Fibroscan on me, and oversees almost all the trials under Schiff. I corresponded with Jeffors during tx via email, suprisingly from a posted email addy available on the web by just running a simple seacrh..Very, very confident guy..
But on a serious note, what did you end up wearing?

[Mister beagle bailey]

What Dr did you have in NY?

Thanks

Beagle

[amirtracy]

hi. yes i did and thanks. i'm freakin' out a little bit...
i had 10mill. pre-tx VL and was clear @ 12 and now 24. hope you're  doing good!   t.

[amommy]

Fl Guy, thanks for the info about your consult!  You are SO on the road to getting this thing GONE!  Have you thought more about what your course of action will be, or are you going to take your time making a decision?  I will be thinking of you and I am interested in keeping up with what you decide!

NYGirl, I have seen a lot of info saying that geno 3's are relapsing more and might consider the longer treatment.  Can you point me in the direction of information about geno 2's?  Each time you mention this, I forget to ask.  I am curious for articles or other info that indicates geno 2's should now treat more than 24.  Thanks!

Amirtracy, you cleared early on right?  I truly believe that you did not hurt your chances for SVR by reducing to a dose that is now weight based for you.  Hang in there.  I hope you are feeling better!  

[cuteus]

here is an interesting article for two's and 3's
http://www.natap.org/2006/DDW/DDW_24.htm

and the latest list of hep c articles
http://www.natap.org/hcv.htm

there are quite a few on cirrhosis in last yrs' archives on that site, please read them.

[friole]

fl -- great consult.  Lots of answers and lots of options.  I like the fact that he will advise your tx doctor.  I am sure your brain is on strain, trying to make this decision, but I think I know which way you will go (traditional combo - longer time, and weight-based riba).

Good advice to all looking at trials. Get in the radar.

az girl - wondered how you were doing.  I am so glad you cleared at 4 weeks.  Don't geno 3s have a lot of fatty liver (steotosis) issues too which complicate matters?  Do you have any of this?  I really think the information is lacking on extending treatment, or re-treating for geno 2s and 3s.  How is your family, and are you able to keep up with your business on tx?
kathy

[Kalio1]

I am so jealous of you guys getting to see CSNY! I want to see them so bad!

[dancegirl54]

FLguy - was thrilled to see my doc's name on that list, "Nez"
I am very happy tho not on tx yet, son will be very very soon

paris - was it you that went to csny? I am going wednesday night and cannot wait!!!!!!

[Mister beagle bailey]

Does anyone remember the site that was posted a few weeks ago on finding a hep C dr in the area in which you live?

Tulsa needs one in or around Tulsa OK.

Thanks

Beagle

[Mister beagle bailey]

Paris you treated for 24 weeks, right.  If so then you probly were UND at week 4 not 4 months.  Am I right on this?

Tulsa, Someone posted awhile ago a site that listed Drs from all over the country that treat HEP C.  Let send out a SOS and see if someone has the site, I can't find it in my notes.

Flguy, The list you mentioned as the top Drs, Ira would be Ira J and John would be John Hutchington but who are the rest (last names) if you remember them.  Just for future info in case needed.  

Beagle

[amirtracy]

Thanks for posting the info from your dr's visit. it's very helpful and i hope you post your decision. all the best to you.

I have a question for anyone to help with.... didn't want to start a thread and was touched on here...

first backstory...
My doc reduced my riba from 1200mg to 1000mg this past wendesday. weight-based makes it appropriate now.
My hmg is down to 9.8 and he feels like that will help it.(and i'm uninsured so it's not the procrit i can get on the med program for that but the referral to a hepatologist and the associated fees that present the problem). I see my dr in 10 days w/ a cbc the day before to check my hmg again. I've asked him this but he is very vague. keeps referring to the first 12 weeks being the most critical but i don't get the feeling he's "up" on stuff..
My question is-
Did I just increase my chances for relapse by reducing dose even tho' it's appropiately weight-based now?
Is ANY reduction at all detrimental to my outcome?

week 25/48    thanks everyone.

[Kalio1]

I'd follow FLGuys doc's advise, if clear at 4, then 48 if not then 72 because his doc definately knows what is UP and in this fast evolving non exact science of Hep C tx for cirrhotics, his word is definately worth listening to IMO he knows of what he speaks.

[cuteus]

paris, you were not clear by month 3(12 wks)?  if you did not clear until after that, standard tx length might not be enough. go back to that calendar and count!  slow responders might need more time on tx!

flguy; I KNOW I have the top hepatologist!
great thread!  If your intent is to truly rid the freaking virus of its hold, VX might not be an option, unless is the branch with the other two guys(IFN, riba).  That is the proven combo, and since we have no SVR rates with VX yet, it might just be another gamble with just it (at whatever dose you fall into) and IFN.  Tough call, I am glad I don't have to make it!

it looks like you are down to choosing bt two options now. Good luck

[GrandOak]

As one who had his Ribavirin reduced at 6 wks instead of augmenting with Procrit, I can speak to the what it did for me:

- Resulted in me getting a qualified HCV doc instead of a Infectious disease (ID) doc.

- Had VL increase 1.9 mil between wks 12 and 24 while attempting to establish Procrit dosage which would allow me to regain original Ribivirin dosage of 1200 mg and increasing to weight-based dosage of 1400 mg.

- Has me thrown the initial 25 wks of tx out the window and starting tx count of 72 wks over upon reaching 1400 mg. Provided of course I show 2 log drop in 8 wks (new wk 12) from my original 72 mil VL base-line last Janurary.

- Augmented tx with Neupogen 20 some wks in because of large ANC drop, which was odd since we were only changing the Ribivirin and Procrit dosages.

In short, by following the PI for Ribivirin my original ID doc set me back significantly and I suspect will eventually will result in a battle with the HMO on tx coverage since I will not be able to afford the 7K plus for a months meds, let alone the follow-up visits and lab work.

[FlGuy]

I don't recall where I heard of pre-dosing riba first.  Although, we discussed it some here many months ago.  It does take some time for the riba to get up to 'concentration levels' so it sort of makes sense.  But, I wonder at 'guidelines'.  This doc said clear at 4 weeks, do 48 weeks. If longer than 4 weeks, go for 72 weeks.  What if I clear at 5 weeks and not 4?  This stuff is not an 'exact science'.

[Kalio1]

If I was you I'd get started see if you can get him to up riba to 1200 a day, let him know you want to "go long" due to your cirrhosis and have HIM study up on it! The deal with cirrhotics seems to be to up riba and extend, many say go 72 weeks but take what you can get. He's the doctor for cripes sakes he can do some research! It does sound like he is willing and wants to help you, you can bring him info too and work with him to get him onboard so you an clear this evil virus. His pretty comment was so out of line I'd like to slap him one BUT he is what you have to work with so work it kiddo! Get him to LISTEN to you and help you get well. He is a doc he ca do some cosuting and investigating if he isnt very familiar with Hep C. He should watch your bloodwork but every two week appts is a bit excessive and costly but maybe he is just saying that beause he is nervous and not used to treating Hep C and is being cautious, most go once a month or once every 6 weeks. Te him in your support group most patients see the doc one a month or even one every few months unless there is a problem, maybe that will help. Keep a close eye on those blood tests every month. Get him to do a PCR at the 4 week mark if at a possible so you can know what it says,if you are UND then your chances go UP to SVR. There isnt much about this whole thing that directly applies to us 2 and 3's ( the easy genos, yeah right) I used geno 1 info and that helps, docs do want their patients well so hopefully he will go a bit off label for you. For cirrhotics the plan seems to be up dosages and go longer actually the recommended length by a lot of experts is 72 weeks. Have him study up and famiiarize himself with the latest news and look at the HALT C and other studies. I think Cuteus has some good extend/up dosage info, I have it somewhere (Lord knows where)but I will try to hunt it down. Today is day after shot day for me so not my best day. When is your next appt? You have the meds covered by the drug co, right? So all you need to do is get this doctor onboard with the treating protocol you want and you are good to go. Start with the 6 on this, then in 6 months he can write another scrip for the next 6 months and so on. You CAN do this! You can get him behind your way of thinking! Arm yourself with info and the next appt. hopefully you will be all set.