Applying for study at Methodist Hospital Liver Foundation

[woody03]

       I got my results back and I'm 1a. I am going next week to apply for a study. I'm wondering if it's standard to get a biopsy before a trial ??? I don't know what stage I am yet. I wasn't happy about being 1a, but they only have a study avaiable for 1a.

[frijole]

How did your appointment go?  

[woody03]

               Yes I paid for a ultrasound which did not show anything. My enz is 67. I'm fatiuge and has a liitle discomfort on my right side. I would like to know what stage I'm in, if it's stage 1, I'll wait. I'm going tomorrow to Methodist in dallas, they did pay for a test for geno type,  it's 1a. How are you, your in the middle of tx aren't you?

[Texas714]

Didn't you have some sort of test recently that showed little to no damage to your liver?  Some sort of scan or MRI or something like that?

[woody03]

    I'm seeing Dr. Gahlib. I'm just wondering how they determine your stage without a biopsy. I guess I'll know more tomorrow. I think Merck is involed from my searcgs, but no idea what the drugs are. Thanks !

[frijole]

Looks like you are on line early - before work maybe like me.

Don't know what happened to the address I typed but you can google clinicaltrials.gov.  Then you can refine your search by

-hepattitis C
-currently recruiting
and location (Texas)

What I wanted to say yesterday was that there are a lot of trials out there.  Some of them use the standard drugs - interferon and ribavivin - and add a trial drug.  Some substitute the trial drug for the one of those few. I am not sure I would do one of those trials.  Personally I have decided I will only do the Telaprevir or the Boceprevir trials - and I am not sure that Dallas as the Boceprevir trials.

As to the biopsy - for some of the trials, the inclusion criteria is a biopsy in the last 2 years.  -- that means, at your expense.  In other trials that don't require a biopsy they may just want to be reasonably sure that you do not have cirshosis or decompensated liver.

Good luck tomorrow.  I will look for your post to see what you found out.
frijole

[woody03]

            I'm going to apply for a trail in Dallas tomorrow. I have never had a biopsy and do not know what stage I'm in. I assume if I'm accepted they will do a biopsy on me, or is the biopsy 1st? I needa biospy, but if I'm only stage 1, I doubt I'll go through a trail at this time. How do they keep you from taking your free biospy and moving on? I need any imfo available on locating trails. I have read enough to know that they are all not equal, as far as the drugs go.Thanks, and best wishs for all the suffering out there.

[woody03]

        Thanks, but I'm not sure how to type that address. I'm very interested to know what drugs that trail has.

[frijole]

Trials are great if you live close -- but it is still better to be a little choosy.  Yes I am from Midland and my hepatologist (Gahlib) is at the Liver Institute - where you are going.  I have spoke to Angela a trial coordinator, but I think there are more.

Here is the address of one of the trials they have for treatment naive--

http://www.****.***

when you find out which one they are offering you post it here.

good luck, frijole

[woody03]

  Thanks, I didn't realize my profile was female. I am going to an oppiontment Tuesday at the Liver Institute on Beckly St. in Dallas. They paid for my b.w. for geno typing last week. I do not know what stage I'm in, never had a biopsy. I have no idea what study it is, only that if I'm accepted I only have to pay for 1st visit and labs. Do you live in Midland ? I'm near Greenville an hr. east of Dallas I'm selfemployed without insurance, I will be taking whatever they offer.

[frijole]

My hepatologist is at the Methodist LIver Institue in Dallas.  Is that where you are going?  

I think most trials require a biopsy within the last year but you will have to check.  Have you already scheduled an appointment with the Hep C Clinic?

Are you female?  Your profile says so, but that is a pretty hefty mustache.  Besides, I don' t know any gals named woody.
Frijole

ps I am trying to get into a trial at the Liver Institute, but it would be for relapsers - not the one you will get into.  Which one are you trying to do?

[nygirl7]

but don't pay attention to who is talking...
----------

Don't feel bad - I've been here for three years and DO pay attention and still can't remember a darn thing about most peoples stats no matter how I try.

The important thing is you keep asking questions and learning.......don't worry about anyone else quite yet.  At this stage, you are important number one.

I had two different types of geno 1 (1a and also 1b) and killed them both so I'm confident you can kill off just little poor old 1a!

Hang in there!

[Trinity4]

Fatigue mostly.  Fevers, achiness, pains have pretty much stopped.  Started leveling out around the 12th week.  Once my blood work stabilized sx weren't so bad.  I've even adjusted to the fatigue.  Working makes me push harder and has been a motivater for me.  I consider myself fortunate.  Attitude has a lot to do with treatment.  I wouldn't let it beat me down and so far so good.  Everybody is different so don't worry too much - you'll do fine cause you got to see those grandkids.
Trin  

[woody03]

        I'm glad that's not your pic... I can tell your a fighter, that's a large part of any obsticle in this life. What type of sides are you having at this point ??

[woody03]

         The one in Dallas. I have no idea what the program is yet. I figure at this point, I'd take a free biospy to see where I'm at and go from there.

[BJ1fish]

What Methodist hospital are you applying at ?  Houston?

[Trinity4]

I can't speak on the criteria for acceptance into a trial.  Many here are currently in trials and I'm sure someone will give you the specifics.  I do know certain health problems can disqualify you but I don't even know what those are.  
Are you talking about the little girl with the lion face?  I pulled it off of some generic pictures on the internet but thought it was an appropriate expression of how I wanted to approach treatment - scare the h-e-l-l out of this disease.  Actually, that pic looks good compared to now!!!
Trin

[woody03]

          I think treating is the answer, hope they acept me.. Are you aware of any general criteria that would keep them from accepting me ? They have my referal and paid for the geno test so my age isn't a factor. I did most likely get the disease about 35 years ago, from i v drug use. They know I have no insurance. I did look at your profile, is that really you ???? Was that pic before you started tx ??????????

[Trinity4]

Your fine Woody - ask away.  Most people on this forum are more than glad to help.
After 20 wks of tx I don't even think about how I am anymore.  It just becomes another day in paradise.  
I know what you mean about wanting to wait and understand the flip side that you don't want to turn down the opportunity.  Some people treat regardless -  they just want to get rid of the disease.  I'm at stage 3 and wish I'd known I had this before I got this far along.  I'm one of those that would have treated regardless.  I encourage you to treat if you do have more advanced liver disease.  This disease can progress very slowly or it move very quickly -  we just never know.  Either way, you don't want to take a chance given your age and length of time you've had the virus.  My opinion only - it's definately your decision.  Take care
Trin

[woody03]

               Thanks for writting. I must admItted I feel selfish asking questions about my state and not asking about yours. I have read alot on here, but don't pay attention to who is talking...
               They paid for the bloodwork for the geno typing, and said all I would have to pay for, is my 1st office visit and any labs that day.  I go Tuesday, with this packet they sent me. I'm thinking from what I'm reading about tx I might consider waiting to treat if I'm  stage 1 or even 2, but not having insurance and being 55 I'm some what afraid to turn tx down.


                                                                                   Sincerely, Woody

[Trinity4]

Yes, it's standard procedure to have a biopsy before tx.  Biopsy tells you exactly what stage of liver disease you have.  If the liver disease has not advanced to stage 3 or above, you do have the option of waiting to treat or treating with newer drugs at a later date.  If if recall, you don't have insurance and that can be a problem when trying to get a biopsy done.  
Treatment is still advisable if early cirrhosis is present, but with advanced cirrhosis treatment is not effective and can be dangerous.
If you are accepted in the trial, they will tell you exactly what is required prior to treatment.  I'm not aware of any trials that don't require a biopsy prior to acceptance.  Hopefully, the Liver Foundation will provide the necessary assistance need for the biopsy as it is the gold standard for determining the health of your liver.  
Glad your making progress - Geno 1 isn't so bad - at least we are the majority in the US but that automatically qualifies us for a minimum of 48 wks to treat.  BUMMER.
Keep us posted.
Trinity