clinical trial in San Francisco for geno. type 1

[orphanedhawk]

Any geno.type 1s in the S.F. area interested in participating in a clinical trial at CPMC, comparing fixed dose to weight based dosage interferon tx, call: [phone]

[FlGuy]

Although I have not checked clinicaltrials in a couple of weeks there are a few interferon trials that are recruiting in various locations.  One is 'induction' dosing of ifn2a (pegasys) in varying doses and durations.  The premise is to use highdose ifn (up to double the usual dose)That one seems interesting to me.  Another, which a trail site invited me to participate about a month ago involved Albuferon. That an interferon that is dosed biweekly vs. weekly.   Since I'm not geno 1 and currently on tx, I don't qualify for the Albuferon.  And, I started current tx double-dosing the peg for the first 4 weeks, which is why the other sounds interesting. But, if I were a watching and waiting person, I'd try to hitch my wagon to a VX trial.

[orphanedhawk]

I'm not supposed to fall down. My biggest accommplishment this week was dead heading my potted primroses and pansies! I never could do those pogo sticks. And I've had concussions from being thrown from horses. Horse people never fall off, they are thrown. LOL!

[sfbaygirl]

Geez, you have the energy to jump on a pogo stick? I'm lucky if i don't get dizzy tying my shoes, why I got velcro now! lOL I doubt this trial is for people already treating...

Glad to hear you are only on Neup once a week. That stuff has sx. Platelets go up and down, sure glad you have dr. F. My dr. would have cut me off months ago!

[nygirl7]

I am pretty sure that a huge study was already done on this same stuff last year. I know Dr. Jacobson made mention of the results...but I was over saturated with info and didn't write it down.

If you google you can probably get some information on how it turned out. I'm just brain dead and over worked today and can't think.

Still - it's a great option for people who want to do combo treatment but can't afford to for some reason. As LONG as they provide rescue drugs etc.

The cost of those meds can be MUCH higher than the cost of the actual treatment itself.

[sfbaygirl]

I wonder if they would let me switch when I end my 48 weeks? That sure would be helpful to get the drugs paid for, as I know ins. won't extend me.

[orphanedhawk]

Hi, I saw a sign about it in the waiting room yesterday at CPMC. I had to pick up some Neupogen from Mark. I think the trial is pegasys versus peg-intron. You would need to phone that number for more info. They didn't mention much other than wanting genotype 1, compensated livers, and expenses paid. I think the dr. in charge had an Italian or Spanish surname, maybe with an M? I only wrote down the phone number.
  BTW: Dr.F is letting me cut back the neupogen to once weekly. I can handle that much better. My platelets are back down to 33 so no riding horses, climbing trees or pogo sticks for me!

[orphanedhawk]

Why don't you call and get the details?  

[nygirl7]

Mine just refused to pay too.  I used C2C for my combo meds ONLY and my regular doc was STILL ABLE of course to order my Epo, Ambien, Paxill yada yada yada and my blood work / tests. The insurance just wouldn't pay for the meds. Stupid huh?

I wouldn't get into a study just for that. MUCH easier to have peggassist or C2C pay for the two meds and continue on.

Somebody new might screw you up somehow. After week 48 I felt like I was an old pro and since I didn't have to do anything except have them refill the meds with a simple phone call - and they came straight to my house...I did what I wanted and avoided ALL doctor appointments if I could.

I just had HAD it (especially since he freely admitted I knew more than he did about the disease - thats a goof but most likely...you will).

:)

[sfbaygirl]

Yeah, you are right, I am better off not fooling with any trials now. I still haven't called C2C, so busy with fire stuff etc, haven't had time. Hope I qualify, but from what I hear I should! Of course I didn't write the number down, so if you could please post it again, I promise I will this time! thanks sweetie!

Yep, you would think those ins. co would be more up on things give the new studies, that could save them SO much money in the long run by allowing people to extend, giving 4 week PCR's etc. I feel so lucky I have had you guys to help me along. YOU have been a lifesaver and I sure hope you don't leave us anytime soon, now that you are finished! Luv you lots!!!!! so happy for you!

[sfbaygirl]

What kind of trial? What does it involve, INF, Riba, VX950? I know when I was there I signed up for a study where they keep some of blood to retest. Do you have anymore particulars?