More Clinical Trials Rules, Rules, Rules!

[Magnum]

First Cedars-Sinai hospital (which are holding Protease Inhibitor trails) said that if you've taken Infergen, you cannot enter the VX-950 trial. So they called me and said I'm eligible for the Bocepravir trial. I got excited.

Today they called and said that because I have not had a 2 log drop under Peg and Riba, I'm not eligible for the Bocepravir trial either! Where does this end? What's next? Because I'm still breathing I'm not eligible for any trials?

One stumbling block after another. So, now I have to wait for a trial which allows those non-responders with less than a 2 log drop and probably who are the first born during a full moon? This info was told to me today from Cedars-Sinai and the caller ended the conversation with "have a nice day"

Magnum

[dointime]

Aw sh!t Magnum.  That absolutely suks.  

Only positive thing that I can find to say is that it may not be all that long before another trial comes along for which you will this time be eligible.  There's a whole lot of drugs already in development currently, some maybe even better than boc and tel.    

" and seen umpteen people who have SVR'd and although I am extremly happy for them, I can't help but wonder, "when is it my turn?"  

Susan, all those SVR's strike me that way too but it takes courage to say it like it is.  I love it and hate it and get all twisted when I see one of those WOO HOO SVR posts all in caps.          

dointime

[Marcia2202]

Oh no!!! I can't believe this... After all you've been through! I hope that Dr. Gish will have a way of getting you into the trial or have another good alternative. Am thinking of you friend!

Hugs, Marcia

[Magnum]

Beyond belief! Funny thing though, if you called Schering and said you would like to donate $200,000 to their research fund, I am positive you will get not only the Bocepravir, but guaranteed not to get the placebo.

However, in our case, let's say we luck out and get the Bocepravir. The battle will not yet be over, because after the agony of finally getting into the trial, you may get the placebo.

I have been told by Cedars's trial rep that they have had better success with Bocepravir than Telepravir. That is a good sign. Another good sign is that they are in phase 3.

Tomorrow I see Dr. Gish, the Hepatologist. I will run this by him and get his opinion on how long I can wait now that I'm at the beginning stage of Cirrhosis.


And the battle goes on....

Magnum

[susan400]

Mag.., I'm so, so sorry to hear this news.  I know that you were all set to get started and then, to have such a big let down, I know how discouraging that can be.  You are, like me, you REALLY, REALLY, REALLY, want to kick this Hep C in it's keister and are sick and tired of messing around with it and having it be such a major ordeal....,  at least I think, if I'm reading you correctly, you are probably feeling much the same feelings of frustration that I do.  I've done TX's over and over and over again x 10 since 1997 and seen umpteen people who have SVR'd and although I am extremly happy for them, I can't help but wonder, "when is it my turn?"   And when I was told that I could not be eligible for the Boceprevir because I had...., had one little measly month of Telaprevir..., that was the reason I was turned down, I was so mad, frustrated, etc., etc.   I am now in a holding pattern, waiting until Boceprevir becomes FDA approved because out of the two, Telaprevir or Boceprevir; I am more inclined to go with Boceprevir when I becomes approved, since Telaprevir as early as week 2 gave me the horrendous rash.  I know it was the Telaprevir because I had no Riba..., I was in group C-no Riba group.    Anyhow, I'm like holy cr*p, I've already been doing this for 11 yrs and now have to potentially wait another 5?  I'm saying 5 because I don't want to get my hopes up with thinking that it will definitely be approved in another 2 yrs.    And then, I'll have to hope that my insurance will even cover it and that by that point that I won't have gone over into cirrhosis.  I hate this da*n disease.  I'm so tired of it.  When somebody gets cancer, everybody seems to have empathy/sympathy for them and they get so much support and comfort and encouragement, but because I/we have a disease that has a bit of stigma attached to it and that (in my case at least) we don't always look sick, or even act sick (when we're not on treatment that is), then nobody really seems to understand; or really give that much attention to it as far as research dollars, etc.  

Sorry, Magnum, I didn't mean to start going off here and hijacking your thread and getting all carried away here with this reply, but as you can see, I've had alot of bottled up feelings about this all......    

I close with saying that I totally understand...

Susan400

[zazza]

So you have to be an early responder to get into this bocepravir trial? Strange. I thought the PI were doing pretty well with non-responders, even null responders. Wonder if they want more data first from the ongoing non-responder trial.

Best wishes,
Za

[Kristina538]

I hate getting results of anything over the phone;  I now tell them that I'll ring them or pick up my results or get them faxed;  it's not like it's going to ruin their day.   And it's not as though we have the motivation or energy to complain about the 'customer service'.  

So sorry Magnum;  I hope your doc/specialist is thinking outside the square to get you some assistance with a plan 'C'....

[m_strings]

I'm so sorry about the response you've received.  How frustrating.  I wish the heck I had something positive to say.  What a roller coaster ride this can be!