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Avatar universal

INR - check; Eyeballs - check; HCV-796 do your stuff!

First thanks to chcnme and ChrisDDD for all the info on 796. Lots of threads to read through and info was invaluable. Chcnme, I did read the most recent info. Had to look up a few terms, the rhombo thing, fainting on blood draw I think??? The seizure guy was on high doses of methadone. But it looks promising! I am hoping that this trial has good results too.

My INR came back this morning and it was good.  I think it had to be 1.4. Saw the opthamologist this afternoon. That was the last test. And I have passed them all. Trial coordinator scheduled my start date for May 7, so I think I am in. I guess I should have asked if it is set in stone. Also, I  thought it was an 18 day window, but it is 22 from first screening test to start, so get your calendar out.

My platelets last June were 111. The online info said the cutoff was 100. That is why I didn't understand them wanting to cancel my screening. I heard nurse on the phone with the doc and it sounded like he was worried about cirrhosis as well. So even with trial requirements stated, its sounds like a combination of things that are close to the limit can keep you from qualifying.

They didn't ask me about my teeth at all. And your coordinator must be comfortable with your heart stuff or they wouldn't have contacted you. So call your doc and see what he thinks. Maybe we will be doing this at the same time. It would be nice to compare notes with you. Oh they said that I will stay in the office after first dose for 2 to 3 hours and have 5 ECGs. She said 796 can cause heart irregularities so they are extra careful first week.

Do you have any paperwork to review yet? I have a copy of my consent forms, if you were wondering about something in particular.
6 Responses
Avatar universal
Yes Bug, I couldn't believe how fast my attitude changed! I am sure I will be waffling up to the moment I walk into the clinic. But this whole deal has been like a runaway train for me. One foot in front of the other.

If there is any info I can give anyone about my screening appointments and what they have told me, I will be checking in today and tomorrow (then off camping for 5 days). She said they are filling up fast and only have a small group that will be participating at my location.

Anyone that is interested, should contact their doc, regardless of what ClinicalTrials.org says about their location.
Avatar universal
That seemed to be fast.  It looked as if the trial was open but they didn't think it would start till Sept.  I guess sooner, eh?  Maybe some of this is a race to close the application filing time.

Looks like a bunch of new trial information is coming out.  Clinical trials said that Wyeth had more info on the trials.

Looking forward to hearing how you all do.

best,
willy
146021 tn?1237204887
Sorry for the corn, didn't mean to make a joke about a great bands name either!
You sound great, it's exciting that you got in and are getting started. Cruelworld posted a question re: cost of trials. Is there a cost associated? I thought the trial would be free, with only out of pocket costs for travel to get there or something along those lines.
I always hear advertisements re: participation in clinical trials for allergies and stuff like that and they offer free testing, meds and dr fopllw-up.
Correct me if I'm wrong.
Good luck, best wishes!
Bug
Avatar universal
Corn. I love corn!

No costs as far as meds. Even rescue drugs. Get this, they pay you $25 for each scheduled visit. Not every visit though...she explained sometimes you have to come in to redo a blood test or you might have a problem with something, but for every scheduled visit that is in the consent paperwork. And they spell out how you are paid, every sixth visit a check of $150. I don't know if it is the same at every location but I would imagine so.
Avatar universal
I participated in regular INR + Riba trial in 1995-96 and after first 6 months my nurse surprised me with a check.  She said that they did not disclose about the check at the beginning because they did not want people to enroll only for money.

I'm very happy for your enrollment, FOO!!  You are a real fighter!!!  I would LOVE to be enrolled in those trials but for one reason or another they disqualify me ... therefore, I'm "addicted" right now to Infergen with Riba :)

I wish you a nice, sweet, perfect SVR!!!!!  
All the best!!!!!!!!!!!!
Avatar universal
OK...I'm kind of like... omg - I'm sitting here digesting what you've just written.  Thank you SO much for this info.  I hope my platelets are above 110 or whatever the cut-off is you posted.   I think they are.  A few months ago they were 130, and I don't have any bruising going on, and so - I bet they've maintained at least 130.  As far as I know my INR is OK.  Had an eye exam done in Dec - opthalmologist said no disease process seen, just need glasses. I think I'll do OK on an EKG.   I'm not EVEN looking anymore at the Rhombdylomosis or whatever it's called hahaha.   It was in a patient on high dose Methadone. The syncope (passing out) and the seizure - well heck, I've done both before (eons ago), and I don't remember either, lol - and so maybe if I'm one of the 1 in a 2000 it won't be too bad :)  My perido says gums and teeth are fine.   If they start going south on tx, well then - they'll just have to get in there and turn em around.  Research doc (when telling me about this trial many months ago)  was not worried about them IF they were to "optimum" and he had note from perio  (and that was when he was discussing NO rescue drugs for me).  Now that I know they allow Neupogen, and now that I know my perio will clean my teeth on tx, then I can only hope treatment won't make the gums degenerate quickly.  I've got Peridex rinse  (antimicrobial - wipes all bacteria out of the mouth)  I can use "extra" precautions.  My heart?  hahaha - I'll just have to get in and strap the seat belt on - hopefully not strap a holter monitor on :)

And you  (or whoever said it)  is so right about NOT trusting that clinicaltrials dot gov site.  If you did,  you would think (if you had treated before) that you would be disqualified.  Not so.  

On the payments, yeah they do pay you in trials.  I've gotten 25.00 gift certificates  (over 125.00 worth so far) for that Uncertainty in Watchful Waiting with CHC trial  (and that was just phone interviews and answering questions).  

And.... and...and ....they PAY for any procrit and/or neupogen???  OH MY!   That is awesome!  I thought I would be having to get those on my own!!!  

Cruel world - as a rule, "trials" are at the research center's expense.  The treatment drugs and labs and any other "expenses" are paid for by them.

Speaking of camping, foo, - my research center is a long ways from where I live  (three hours from this driveway to their parking lot in good traffic).  I've wondered if it might be a good idea for me to camp out near the clinic -haha- for the first month or so :)  although I don't know how I'd swing that.   I'll just "shut up and drive" as the saying goes.  But... if possible or feasible or.. if I can work it out somehow (being away from home)  I might live in a motel room up there for a while.   But Heck - I'm not even IN yet, and so I'll cross that bridge if I get to it.

Let's stay in touch, Foo!  Best of luck to you!!!   Have fun camping!  That'll be so nice!  

ChrisDDD - where are you?   Has your doc said anything more about the 796 to you?  Be in touch.  We wonder how you are.  

Tallahassee - would you want in this trial?   If so - shoot for it!  :)  

I'm gonna go now -- gonna go sink more onion bulbs in the earth and plant maters :)  ....... and think.  

Hey BUG! :)  hahaha!  
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