How To Get Into The Vertex Trials

[jmjm530]

Unless you haven't been on for a while, you probably have noticed a few new visitors lately. Mremeet and PLN, both of whom are now enrolled in the Vertex trials.

If you're lucky like PLN, and your doctor happens to be running one of the trials, then you probably stand a decent chance of getting in if you meet the requirements.

However, not all of us are in that position, so I'd just like to re-post some of what Mremeet said:

"...like you and many others I was very thirsty for info on this VX950 trial. I was calling vertex and my local research hospital last winter about it. I kept calling and calling all through the spring and pestering them all, until I finally broke through and got a commitment from them to allow me to at least be screened..."

Some Vertex trials have started, some maybe closed, others will start at some point. I really don't have those dates, maybe others like CTON does. But, again, unless your doctor happens to be affiliated with the trial, those that get in like Mremeet are going to be those with the most persistence, who do the most research, make the most calls, "bug" whoever the most, etc, etc.

You may not think the trials are for you -- and they really aren't for everyone -- but if you do want in, follow Mremeet's example and do the heavy work cause they aren't going to come to you.

-- Jim

[GrandOak]

Trial, trial, who needs some stinking trial. Everyone grab your pitchforks and torches and we'll storm the walls of the Vertex citadel to take the silver bragon slaying bullet and let them eat cake.

[52TELE]

ARGHHHH!

[NYgirl]

Ayi Yi Matey - pitch fork ready ;) (Even though we don't qualify LOL - in other words...just for the fun of it!)

[copyman]

i wonder if someone with enough money could buy the drug from someone working at the lab where they make it. or perhaps take a scientist hostage for 12 weeks making him give you vertex until you clear. hehe, just a thought.........

[52TELE]

There would be some really suprised junkies that thought they had the flu ,are breaking out in a rash and yelling at everyone about their mouths being dried out.

[GrandOak]

I've talked with folks in my local support group who went through tx 10 or more years ago who had to do exactly that to get around the insurances and docs not willing to prescribe.  Some even went so far as to order their riba and such from overseas to get their hands on it.

[Pdilly]

I don't think anyone stands a chance unless they live in or near one of the cities that are in the trials.  I wonder if they will change cities for the next couple of trials.  The nearest place for me is Denver and that is 10-11 hours away.

[Forseegood]

hey, this is a good thread, the people who have gotten in can lend their experiences, I actually refused this time around, and now I'm kind of regretting it, seeing all these people get on board, well, next time...thanks for thinking of us, though you have already SVRed...

[sfbaygirl]

No regrets. You must have had a feeling. I hope these trials work out but from what I hear we haven't had the first group reach SVR, if it is based on 6mos post tx, right?

[fishdoc]

I just happen to have a rusty pitchfork, and a 9mm... count me in..

[OnAPrettyPoison]

I don't know if I missed a post, but what is going on doctor of fish?  How are you and have you decided what you are going to do?

[Forseegood]

yeah, I'm just watching and waiting these trials with a my fingers and my toes crossed like everyone else...hope you are well, good that the weather let up huh? It's been nice down here in the SoCal for a few days now, a nice blanket of overcast....not looking forward to any more heat waves, between the hep and the menopause, it makes me feel like someone threw me in an oven and shut the door behind me...so I stay where the AC is most of the time....be well...

[sfbaygirl]

The weather is great up here. I missed the whole heat wave in Jamacia, thank goodness. I don't deal with heat well.

Menopause can really do a number on a woman. I took the hormones for a couple of years and quit them. I missed your posts about there effects on hep c.

[Forseegood]

oh Jamaica, too bad for you huh? ha ha! always wanted to go Mon...in fact, was getting ready to go years ago but then they had that big hurricane, so I went someplace else....sure they have recovered from all of that...well, lucky you, hope you had lotza fun!!!!

[fishdoc]

Hey pretty, hope your feeling 90% already!!  I go tomorrow for my first ultrasound_ Dr in albuquerque recommended that and AFP (tumor marker) bloodwork, and other Dr. will be figuring out what to do with thryroid issue (got none now).  At any rate, tomorrow after the ultrasound I will pick up those bloodworks............and my 24 week PCR.  I tried on wed. but it wasn't back yet..so some major decisions friday. If I am not undetectible, I will forgoe friday shot. I have actually felt human this week, had to tour bigwigs today, and made sense for a change. Hope your mind, countenance and spirit is soaring........

[fishdoc]

I actually think the whole thing is because I finally fessed up to the Dr. that I had cheated on him, and had the consult Dr. send him a letter, and he recommended an ultrasound and the afp.  Baseline bloodwork in Dec. had AFP, but I don't think  a F@@@ing thing is going on!!  Just different Dr. wants Different tests!!  So, I won't complain, because if I don't respond... the Dr. in Alb. will have the Vertex trial..

So hows life treating you?

[goldyn]

well theres no harm in a ultrasound just do what cha gotta do, with everything goin on with you ,you better be unde, you never had thyroid issues before tx right?
I just turned in my monthly blood work on mon have an appt with doc on saturday, he is concerned about my blood pressure, its been reading high since i started tx, i was a little borderline before,my hemo was 11.4 last month ill see what it is sat,to tell you the truth ive had a real bad couple of days just screamin my head off at everyone and everything, i think im gettin a grip on it now,only cause i gave myself a stiff neck from the strainin to yell, and a lovely twitch in my left eye, that wont go away, tx is hell will do shot 35/48 friday.
Good luck with everything on friday....

[sfbaygirl]

What is it with the left eye twitching? Mine has been doing that all day. I am sure glad I don't have that Ribarage that makes your neck go outta wack. I have enough neck pain! I don't think my yelling would work too well around my house, seems like we have had our share of screamers lately! I'm the one that has been hiding under the bed. LOL I have had that rage and it is awful, hope it stays at bay!

Fishdoc: Thinking good thoughts for you tomorrow.

[goldyn]

The only thing i can think of that made my neck stiff , was picture a drill sargent giving orders how their neck bulges out well i guess i must have looked like that , thats how it got stiff, oh lawd i feel so bad for my family, but they know its the meds and ill get over it, and to tell you the truth thier not being very nice lately either...

[Pdilly]

Glad you had a good time on your vacation.  The heat wave was terrible.  It was 107 2 days ago here in KC.  Cooler today (in the 80's) almost feels like fall.  Yup...added heat and menopause do not go together.

[goldyn]

Wow you got a full friday on your plate, did you ever figure out why after all this time they want a ultrasound, and when did you have your last tumor marker, why all of this now?