some info on vx-950

[Upbeat]

Here is a email I received from vertex.  
Hi Ron--

Enrollment for our (VX-950) PROVE 1 study (for treatment-naive and genotype 1 patients) is completed.  At this point, all we know is that there may be a trial for non-responders late this year or early next year.  No other details are avaialble at this time.  Please visit our website (www.vrtx.com) for updates on current and upcoming VX-950 trials as any new information will be posted there as it becomes available.

We also have a clinical trials hotline [phone]) that you can call should you wish to speak with someone.  You can either e-mail or call us to find out more information once we have more information regarding any upcoming trial.

We thank you for your inquiry and continued support of Vertex!

Best regards,
Vertex Pharmaceuticals, Inc.
Clinical Development Staff
                                                     Ron

[Tater-ToT]

LMAO..... "NEITHER" Far From Either... Heck I'd of been happy if I could have at LEAST Pull-Off A Julia Sugarbaker... Tee Hee!

I'm allergic to Delphi.... LoL... (Just Kidding)
I used to have a moose on my picture when I was over there (cause I was In Alaska)... guess I could be an elk this time... Ha!

Psst... I posted my pics down below... but I'm gonna delete them at midnight... I have a Pumpkin & 6 White Mice to stay ahead of...LoL ... I don't usually use them on my profile... kind of creepy not knowing who's looking at them... the only reason I didn't post them on the Aussie site is because you have to SUBMIT Them & I can't just up & delete them when I want to!

Anyway, A freind of mine wanted me to check out some other forum other there that you have to register for... so I'll do it shortly, & when I do I'll e-mail you....

Hey, BTW... I am REALLY Sorry about your sister... How Horrible!!!

[Tater-ToT]

I followed the yellow brick road yesterday (your map of how to get in touch w/you) & I wanted to e-mail you, cause until I went over there, I hadn't even realised you hadn't begun TX... I was like WoW... (remember when I said you had a knack for putting things into prospective that time).... Now I know why...LoL...

Anyway when I clicked on your name to e-mail you, it said I had to be a member! I used to be a premium member in Delphi Land... & I would have thought that it would have just reverted into a basic account....but that's been so long ago, heck I couldn't even remember the exact screen name or spelling, much less what e-mail addy I had at the time... so after a few trys I got frustrated & gave up!

I was just curious because I felt so stupid for not being aware of that... I just assumed you had been treating cause I swear it seems like you have been around these parts as long as I had... I must of got lost in the fog somewhere along my TX journey! (I'm embarrassed to admit that)
;)

[Forseegood]

hi, barely have time to cough right now, my little sis is a little sick, she's has ESLD and I'm trying to get her a doc who will put her on the list...life huh?

Fl Man, you show me there are a lot of nice people in Florida! Funny, I've been to Cuba but never Florida? I'm a weird bird...me and Fidel share the same birthday, but something tells me I wouldn't want to hang around with the cat...bet you he has bad BO!!! ha ha!

anyway, yeah, working on that letter and anyone who wants to can email me and I'll put there name on it...

Tator: you can just join up on a basic account, free, it's fairly easy....and put your pic on the profile, have a feeling youre a babe...since youre Southern, are you a Melanie or a Scarlett? I know youre a Scarlett!!! ha ha!  be well...

[FlGuy]

Even though I suggested throwing rocks at Steve's house? Maybe it's misreading on my part, but I get the idea that your toes are inching a little closer to the tx shoreline.  Or, are you going to wait out the 'next big thing'? By the way, I like reading the small snippets of your occupation, you have an interesting world to view.

[Forseegood]

how nice that you follow up on everyone...that's support! hope youre well...

[merlino]

And I am sure that will be one tasty cup of Hot Chocolate!

[merlino]

I don't have much of a choice but to try and stay in control. Believe me, I hate being alone in this, but I don't see any other way for me. I wish a handful of you guys here lived around the corner from me!!!!!!!

[FlGuy]

While driving to work today I was going through a mental checklist and was thinking primary doc - done, endo guy-done, specialist-done, tx doc-done, pcr-done, baseline cbc-done, rx's - almost done and so on.  Then it dawned on me that when it comes to hcv, and especially tx for hcv, control is an illusion.

HCV treatment is being a little kid again with ill-fitting ice skates on a frozen pond.  The ice pond has all sorts of branches, logs and rocks poking up from the surface.  As the kid you are the smallest and at the end of the 'whip',  and the bigger kids are speeding up.  The best you can do is hold on as tight as possible and hope that when you land it's in soft snow.  There's a lot of thin ice to cover and you hope that you go your fastest over the thin ice.  When it's all over, there's hot chocolate.

[GrandmaA]

I'm doing it alone too. The Be In Charge Nurse wants me to call her Fri. when I give my first injection. They like to talk you through it so the device doesn't malfunction. The peg intron has a nice small sharp needle same size as diabetics use. I'm not supposed to inject it all. Just up to the 0.4. Not the 0.5. It's weight based. They give you that nice little case for the pills. One side is yellow for day and one side is blue for night. I need to put 3 in in the yellow parts and 2 in the blue. I will do that tonight. That keeps you from taking too much or too little.

I have an alarm on my home with a button that if I need an ambulance they are right there in 2 min.

[FlGuy]

I stopped by the tx doc ofc on the way in today.  Doc and Aetna swap dx info, test results, treatment plans and other stuff.  Where they usually do it by fax, for some reason they are mailing it back and forth, adding a bit to the timeline. Obviously, Aetna has done this before and they are just stepping thru their well-worn and not-so-rapid process. It will work out.

Times for the ex and the kids sound rough.  Hope the ex has someone nearby to watch over him.  Otherwise, kids could get real anxious about his care.  Sounds like you're in for some emotional times and you're adding some emotional drugs to the mix.

[merlino]

I wish you the best. I start next Friday 10/6. From what I have been told make sure you take something(Tylenol,Ibuprofen) for the fever. Not sure how long after shot to take this. As far as an ambulance, I didn't really think about that!! Guess I will now!

[GrandmaA]

Oh, I'm sure I won't need an ambulance its mainly to keep people's minds at ease who are concerned about me being alone. I will be fine and I am cat sitting. He never lets me forget to feed him. I'm getting a wheatgrass juicer tonight (borrowing it) and I will get a pallett of wheatgrass on Sat. at the health food store. But I will have to keep the cat out of it. I will share it with him, but he can't have a lot. I need it.

My goatein is all ready for the protein shakes. I've got 6 6 packs of Ensure. I live in Calif. so I will wear long sleeves and a hat when I go out.

[Pdilly]

I start mine on Friday.  I have a 'Shot Class' so to speak, pick up my meds at the same place.  Then I go home and do it m self (boy I bet I get nervous)  I hate shots.   After 3 weeks I call them  and they send me another 4 weeks. I don't have to pick them up (thank goodness with the winter months fast approaching).  I am a bear when it gets cold but once it starts getting warm I am up and about all the time.

[FlGuy]

Pdilly and Grandma start 9/29
Merlino 10/6
Me 10/13
Anyone else out there about to start???

[merlino]

PS - I also have Aetna

[merlino]

My friend who is a nurse and will be giving me first few shots is storing meds at her place. All meds will be delivered to her house. Am I a baby or what? My hands shake when I think of giving myself these shots. At least she can help me get throught the first few. She did say Procrit is a little difficult (burns going in) so if I want she will give me these too.Ex is getting worse. My youngest wants to go stay with him and take care of him. Impossible! he lives in another state plus he is only 15! He doesn't understand. Very very heartbreaking time for all of us!!trying to stay strong but.....

[FlGuy]

Once the certification and authorization gets done it should be smooth sailing (at least that's how it works with mine - Aetna). Then, you'll get you first 4 week supply. They should call you to set up delivery. The peg should come in a cooler with some sort of ice/cooling pack that should be ok out of refrigeration for 12 hours.  Then the pharm should auto refill every 4 weeks - make sure you get a spec pharm contact phone # and reverify the refill a few days before shot 5. How you gonna hide that stuff? It's gotta stay refrigerated.
Went to the hemo this am and got baseline cbc and doc and I worked out the schedule for cbc's (weekly for a few, every 10 days for a few, then biweekly). He agreed to various levels, anc can go to 500, platelets to 30 (but won't get that low).  Intersting that he said insurance will pay for procrit below 12. Goal is to monitor, apply procrit at amount and frequency to keep it around 11.5.  Just waiting for the pcr - it's in doc ofc hasn't seen it so nurse won't tell me what it says.  No matter - just a point of reference anyway.  My med rx is also in the cert/auth tennis match with doc and ins.  Should also be resolved in a few days.
All systems go for you too?

[merlino]

Hi, spoke with specialty pharmacy-they told me they were waiting on authorization before giving me a delivery date, but the meds should be delivered by next Friday 10/6. Is this something we will have to go through each time we refill prescription?

[FlGuy]

A guess from one of the trial sites is that non-responders geno 1 in the first quarter of 07.  Followed shortly after by non-geno 1's, also probably in the first quarter 07.