vx-950 vx-222 trial

[Upbeat]

I just got off the phone with the lead coordinator in Colorado for the vx-950 vx-222 trial.  She has been with all the vertex trials since day one.  Seeing how I live in Tucson I thought I might be able to bite the bullet and travel back and forth.  One sticking point. They require 120 platelets.  My last blood work shows 113 so I would be denied.  Also if Cirrosis were to show on the biopsy.   The platelets were a surprise,  I am not sure how to fix that or if it can be fixed. There is an opening they would give me if I can figure some way to raise the platelet count.  On more of a bummer note, she said she just got off the phone with vertex and forget early next year for the new PI and think Summer.

[spectda]

I am sorry to hear about the platelet issue. I would do some cbc privately, they definately bounce around a bit. I really hope it works out for you.

My impression is that telaprevir would be available between next summer or the end of 2011. I never heard early 2011. It's very frustrating, but personally I believe that it will be available by the end of 2011 as well as boceprevir because the last stages of trials are wrapping up. they need the data from a complete trial to submit to the FDA.

It is unfortunate that our system of approving life saving drugs is so hung up in red tape. Of course we can't just give people anything, but when people are approaching liver transplants or death they should have the option to take a chance on a medication that is in the trial stage. It is doing more harm then good.

- Dave

[tashka]

Try shark liver oil. It is a lot easier to obtain and use than papaya leaves. My husband took it (Life Extension foundation brand) for 30 days, and his platelets increased from 84 to 106. This happened after they were steadily falling for 2 years.

It is worth trying. Just my personal experience. Hope you get your platelets up to a good level and can do the study.

[Upbeat]

They said it was non negotiable. the platelets had to be 120. she said you were out if they dropped to 50. So I guess they want a high starting point.

[can-do-man]

Have you asked if there was a lead way of say at least 10% on your platelets? The trial i was in allowed 10%, my doctor said this was common in trials........ Good luck

cando

[Upbeat]

I believe they think if they knock it out in 2 weeks it will be dead forever in 12.  I know its pushing the envelope but they spent a lot of money getting vx-222 to add to vx-950 so you would think they know something.

[Upbeat]

No I am not a Interferon fan.  You are correct it is a crap shoot with the trial.  I asked if there was anyway around it and if I cound go with the 2 drugs instead of the quad and she said no way its the luck of the draw.  After getting my geno test from lab corp I am not against SOC as I was.  My main objection to SOC has always been the odds of it working for me. The new test ups my odds to a realistic 50/50 shot.

[RobertBeWell]

" I will research it.  I would hate to go to all the expense and time to get denied at screening for a couple of platelets.  They are high on this trial.  If you clear at 2 weeks then your done at week 12 and wait and see.  Thats what I call RVR. "

Have they DEMONSTRATED SVR in prior 12 week trials, or is this to SEE IF people will achieve SVR? Be a shame to knock it out, stop, and have it re-emerge.

Good luck to you bro, drink a truckload of that super juice!

Robert

[FlGuy]

This is just from memory.  I think the v950/v222 has arms with and without peg/riba.  On arm is 950 and 222 only.  Getting into the 950/222 only arm is a crapshoot.  You're not a peg fan, right?  

[Upbeat]

Thanks
              I will research it.  I would hate to go to all the expense and time to get denied at screening for a couple of platelets.  They are high on this trial.  If you clear at 2 weeks then your done at week 12 and wait and see.  Thats what I call RVR.

[FlGuy]

http://www.medhelp.org/posts/Hepatitis-C/Guess-Papaya-Leaf-juice-works-/show/1331541?personal_page_id=617047#post_6090392

[nygirl7]

On more of a bummer note, she said she just got off the phone with vertex and forget early next year for the new PI and think Summer. "

Wouldn't be the first time we heard that story.

I too read the papaya tree leaves thing can't attest to it being true but perhaps some research or trial of it would prove beneficial.  Sorry just dont know too much about it at all.

[Upbeat]

Oh my
           I will try and find it.  I guess anything is worth a shot.  Thanks

[FlGuy]

There was a thread in the last week or so in which someone was talking about drinking the juice of mashed papaya tree leaves to increase platelets.