HCV and Clinical Studies

[ArthurJ]

Hi,

I am a non-respondent HCV patients with early onset of cirrhosis.  My questions are:

1) Does anyone know of any Anti-Viral clinical studies or VX-950 or similar type studies being done in US or internationally that are accepting non-respondent HCV patients with cirrhosis?

2) Does anyone have any suggestions or treatment options for non-respondent HCV patients with cirrhosis that have shown to slow the progression of the virus and damage to the liver (Other than Peg-Intron, Infergen, etc.).

3) Does anyone know the overall success with patients taking maintenance dose of Peg-Intro (SQ 50 Mcg weekly)?

4) Does anyone know of non-traditional treatment, Chinese herbs, etc. that are successful for treating/slowing HCV?

Thank you.

ArthurJ

[NYgirl]

Arthur

Someone will come in with the info on Vertex for non-responders...but as far as Chinese meds or herbs used to treat HCV - there is no cure to be found there at all. Don't believe anyone who claims to have cured HCV with anything other than Interferon.

Don't fall prey to the MANY money making schemes that are out there. These people are HORRIBLE and it just upsets me so much that they would make money off desperate people - but they will.

How many times have you treated?

[NYgirl]

Hey don't feel bad...we have ALL been there with the jealousy feeling. Believe me. We WANT people to clear so so much but then reading it while you're still ON the ride well - it's sort of like when the illegal immigrant wins the lotto after being here for a few months.

NO scratch that it's just not nearly the same!  ;)

Just trying to make you realize ... we're ALL on this boat and we all understand. Of course somebody ELSE would tell us we are dreadful horrible people...but you can imagine what I can say to them hahahha.

We'll make it. We might be whiners but...talking it OUT gives us strength to go on, you know?

I was never an IV user either really - but sure as heck got this anyway. Didn't use IV until MUCH later in life so I'm sure I got it from the old fashion 80s way...sharing a straw which I DID do a LOT.  God...I thought the worst thing then that could happen was a few more dead brain cells and since you know me...I figured so many were already gone what acould it matter?

I guess the only good thing I can find now about being so dreadfully OLD is...at least I won't make the same mistakes again.

We will get there. Us Dual Geno's......we are the real deal...one wasn't enough of a challenge for us, was it?  ;)

My BEST to you. You know I am rooting for you and will be firmly planted in your corner.  If you need me, you know where to find me.

Sign us, the whiners club :)

[orphanedhawk]

There are alternative that may help with symptoms. Try going to www.docmisha.com  
   There is a great study about drinking lots of coffee but I don't know if it only protects an undamaged liver. Apparently hep C hates coffee but loves alcohol.
   There are web sites about trials and you can always phone local universities and hospitals that specialize in heptology and ask about clinical trials. Good luck

[HCA]

Thanks for your nice post addressed to me the other day.
You got me in one with the term 'evil twin'
Actually I was never a real IV abuser-just two times in the late '70's when I allowed some one to inject me with speed or coke (don't even remember which).
That someone died four years ago-HCV induced liver cancer.
I am so fed up with this ride that I no longer feel pleased when I learn that others have cleared,I just feel bitter and jealous.That's what the disease and treatment does to ones humanity.
In your case though I really do want to hear that you make SVR,you seem to have such a great spirit.
Just rec'd a message from a 3a who I met at a support group.Relapsed eight weeks post 72 weeks treatment,but he was a very late responder,viral serum still detectable at 24 weeks.
All the best for now!

[Magnum]

HEPATITIS FOUNDATION = 800-891-0707

also - if you're interested in getting into a VX-950 trial. Call this number: VERTEX CLINICAL TRIALS = 617-444-6777


Good luck

Magnum

[mremeet]

I'm enrolled in the current VX950 study. One of the admission criteria was that I did not have cirrhosis (verified by a recent biopsy). But I just read recently on a 'Travelmom' post, that Vertex is accepting candidates with early/compensated cirrhosis for their upcoming trial for SOC non-responders. I'd jump right on that if you're looking for something that'll give you a fighting chance to SVR. Plus look into some of the other drugs under development too, preferably one's in a later phase of development. Best wishes...

[GrandOak]

I believe that tt's all a matter of perspective and how we want respond.  As a Geno 1A Stage 4 classified a nonresponder one month ago after 10 months of a tx were I was barely hanging on by my fingernails using 100,000 U Procrit a week to keep my anemia barely above requiring hospitalization I can understand your feelings.

I too have had felt the rise of bitterness, resentment, and jealousy when I see others clearing, or even attaining UND, while my VL only dropped from 72 million to a low of 1.8 million before rising back to 4.4 million when I was yanked from tx last month.

To make matters worse, my Hgb has only risen from the 11.3 it was at when I was pulled to 11.6 three weeks later according to my lab last week.  Of course it has made that slight climb over the 3 weeks without any assistance from Procrit as I was yanked from that along with all my other meds on 11/3 when tx was pulled out from under me.

Fortunately my AFP reading last week showed normal enzyme levels and I'm praying my ultrasound tomorrow is as promising as well.  So one can find some silver linings if they choose to focus upon them and I've also learned of others, such as Rev's poor sister, where one can find that there are others in worse situations than I find myself.  Thus, I try to be glad for those who are more fortunate in their tx, saddened by those who are worse off, and praying for a break of my own as I try to gather up the pieces of my life and resume it once again.

I wish the best for you as well and pray that we are fortunate to find some hope for a brighter future for ourselves and others in the same boat soon.

[Magnum]

Hi Chev

Doing fine, thanks. Still have the gaunt look on my face, but my hair came back with a vengeance and all the curls as well... This is very weird, because with the previous three treatments (before the Infergen disaster), my hair never came back like this.

So, here's my take on it. If you want to have all your hair back in all it's glory, take an overdose of Infergen, almost die, but be patient because your hair will return. Heheheheh....

A little humor obviously. And how are you my friend?

Magnum

[susan400]

Hey there dual's.  I've struggled with that 'bitter', 'jealousy' feeling, too.  I've had to feel that over and over again.  Then, I start feeling guilty about feeling that way and beat myself up over it.  Then, I start feeling guilty about thinking about feeling guilty and being self-absorbed.  See what I mean?  I really do care about everybody here.  It just gets so darn frustrating at times.  Then, I'm also thankful because my liver could be much worse than what it is.  As far as the IV thing.  I went through about 10 mon. of using the I.V. coke thing. I had periods when I was using it heavily and then, periods where I'd have weeks where I couldn't get it.  It would just depend on what state I was in at the time, and whether I had the money to pay for it, etc.  I'm not going to lie, I liked it when I was flying, but the crash was h*ll and the lifestyle was h*ll and I hurt others because of it.  I'm much happier with my faith and my life being sober.  

Susan

[chcnme]

Hi ArthurJ.  I think you should definitely check into the VX-950 and try to get in a trial with that one (or with others - you might be a candidate and meet the criteria for a number of the newer drugs in the pipeline.)  Just start by researching more on-line, find the sites VX-950 is conducting trials, write / call vertex .  if you can find a doctor at a site where VX is conducting trials, get appointment with them (even it you have to travel quite far.)  

Best of luck!

Hi all you other fine peoples :)  You keep me inspired!  You keep me hopeful!  Thanks for being here.

[APKhaos]

I'm in the VX950 trial for treatment naive subjects - Prove 1. The best way in to the non-responder trial, Prove 3, might be to find a local center that  is running a Prove 1 group. Many of the Prove 1 centers are likely to be participating in Prove 3 as well.

Don't expect to get much info from Vertex directly. The Prove 3 trial design and documentation has to be finished, reviewed & approved before the trial actually starts. The trial doesn't officially exist until then. Also, Vertex can't touch anything that even looks like them being involved in subject selection [for obvious reasons]. While all this is happening, the centers will be lining up potential candidates for enrollment when the trial starts.

That's the list you want to be on.