waited 6wks-hep dr appt today!

[cathi1]

Although I promised not to post til after seeing hep dr,I'm so worried I'm not as prepared as I could be.

I've been larking about trying to get a clue!  I have had "C" geno 1B for about 37years, mild damage at last biopsy 8 yrs ago.
But this last year,lots of right quad pain, ( not gall bladder)no energy, foggy brain, depression, stomach bloating,joint pain, viral load up to 2 mil.
What will these be like amplified to when tx!!! If its time to tx that is. Any way, Thanks to all you fine people talking, I've learned, perhaps If I've progressed to a greater stage; it's time to ask for a trail for vertex-telaprevir. What do you think???Any body?  or am I jumping the gun again? Will I need another biopy or should I ask for Fibroscan? What course would you take ? Or what questions do I need to ask? I want to do every thing right.
Thanks for the friendship I feel already for each of you.
I leave in a couple hours ,so any of your vast wisdom,I could really use. Thanks so!!!

[nygirl7]

Cathi,

I'm glad you posted before...it just helped me so much with my nerves knowing there were great people I could bug (and bug and bug) who would help me with all my questions!

I don't think you mentionned what stage you were?

Take first things first.  Go to the doc and discuss it all with him.  Viral load really doesn't make too much difference at ALL - we use it to monitor how quickly we are killing these stupid critters off for the most part! :)

It's almost impossible for anyone to tell you how you will feel on treatment because everybody is different. For the MOST part though, you can count on a good dose of constant lethargy. That seems to be the most common and constant complaint.

Ask your doctor if he will prescribe the so called "rescue drugs" of Procrit and Neupogen should you need them.  If he says no.........get out fast and find another doctor, that is MY opinion.  The anemia is one of the hardest things to deal with if you get a bad case of it. So you WANT to be able to have the Procrit which will help manage it.

ALWAYS get a copy of all of your test results. Post them in here until you know what they mean - you soon will understand 90% of them FAST.  We get very good at obsessing over every little tiny detail, ache and pain.

To people who don't have this disease they can't understand how incredible it is to have other people to talk about it to.  But it's just so nice to know

YOU AREN'T ALONE

Good luck!
Debby

[cathi1]

Thanks ! off I go.

Bless you, Cathi

[jmjm530]

Well, this will probably catch you after the fact, but here goes anyway...

First thing is to decide whether or not you want to treat. All the other stuff comes later. Best way to make that decision is to find out how much liver damage you now have. In order to do that you will need a new biopsy or Fibroscan. Chances are your doctor doesn't have a Fibroscan but it's worth asking since hospitals are now starting to order them. Once you know how much damage you have, then the rest follows such as whether to treat with current drugs or try and get into a trial or wait until the trial drugs become available or even wait longer.

-- Jim

[Pdilly]

Just read your post..  Let us know how it turned out.

[cathi1]

I'm back with hopeful news I'm pretty sure.  I really feel good about this Doctor, I showed him passed blood works, plus these resent ones, he explaned what I always believed were mild activity:
Necroinflammat  activity scoring FIBROSURE: 0.34h       in range 00.00 - 0.21
Fibrosis scoring - 0.21 = no fibrosis
Necroinflemm activity scoring - 0.29 - 0.36 = Minimal activity = grade A1

He said this recent test for Tumor Marker, AFP, Serum ,should not have been taken ,Seven is high, but only means that liver cells are producing, and it does not mean a tumor!

We are doing another biopsy and an ultra sound. But he thinks i'm probably ok still. He says some  people just don't progress. Boy, that would be the greatest!

Like you two told me , virel load mean nothing, only when treating are they important.

He thinks I have time to decide about tx. He says there are 3 different studys I would qualify for also, so, I will see him and May 21st after the biopsy.

So what you think? I asked him your question Deb, He answered properly, in fact, he told me I'm going to pass this test cause I wrote papers on it!!!

Am I allowed to say the Universitys name?

I have a feeling of relief.  Let me know what you think. thanks much , Cathi























?

[cathi1]

I forgot to explain that FIBROSURE is something like FIBROSCAN
I had taken about 2 years ago by my old Gastro.

[jmjm530]

Sound like you had a very good meeting. As mentioned before, don't try and make too many decisions before you see your biopsy result. Assujming you have little or no liver damage, entering a trial is an option, but another option is simply to wait until all the trials are over. In other words, why be the guinea pig if there's no urgency to treat. Do let us know the biopsy results but it sounds like you'll be just fine.

-- Jim

[cathi1]

thanks Jim, Thats what I always felt. Hopefully, all my symptoms are in my head not my liver!