Hey, I just wanted to wish you the best of luck. My cardiologist called this afternoon to make an appointment so I can learn how to use the Holter event monitor for two weeks. After that, my cardiologist will contact my liver doc at Beth Israel, where the PROVE 3 trial has already closed. The ultrasound my heart doc did on my heart, echocardiogram, was normal. Blah blah blah. All this means is that by now I should be how many days into Phase II trial of PROVE 3? I was supposed to have started on 4/20. Who cares? I feel like I'm never going to get in anywhere anyway. Sorry. Just tired of it all. Ahem! Violins ready, please! PITY PARTY!!!
The research assistant at Beth Israel said they had many patients who wanted to get into Wyeth's HCV-796 trial and that the patients were very upset when the trial was canceled completely. She said the HCV-796 trial was easier to get into. So I'm somewhat encouraged that you got into SOME trial even with MVP. Isn't there anyone in the world besides me who was taken off treatment due to eye problems? I know there are. I was just sitting here thinking today that the very trial I wanted, VX-950, is here right now in my own home town, the drug I've been waiting for for years, and because of one episode of retinal hemorrhaging that cleared up immediately, I not only can't get in the trial here at home, I can't even get into it at Beth Israel!
I feel your pain! I'm been all weepy today myself. I just got so depressed over this who records thing. I had another hope built up that the records I was picking up from the retired doctor's (the office he sold his practice to when he retired) office, would be the ticket. That for sure, it would show what I was looking for. What a bust. I just started crying and crying. I just don't even want to hope about this anymore because I keep on getting the hopes built up and then come crashing down when the records don't come to be. I'll get like one line here and there, just enough to prove that I'm not crazy and that I was on Peg-Intron a 2nd time in 2003-2004 and then, nothing else. It's driving me insane. I have a record from the lawyer's who handled my S.S.D.I. where it has a list of all the record's obtained and shows that this particular doctor was my Dr. during those years and that one of the meds listed, surprise, surpise was Peg-Intron. I called the lawyer's office and they're not even sure they still have those old documents still in the warehouse. I called the pharmacy, where I thought it possibly might have been purchased (not kept past 1-1/2 years.). I had a letter from the insurance company for authorization of paying for the Peg-Intron for 2003-2004. So, I called them and of course, they now can't find it in their computer and have to go and research it, when I KNOW that they have the DAD GUM records because they wrote the dumb letter!! I have a huge stack of records regarding the Infergen (which is not what Vertex needs). By the time all these people did up my records, it's going to be too late to get into ANY of these trials. I'm so down about all of it. Now is the time for me to do this because my viral load is at a manageable level and not when it jumps up a by about 6 or 7 million more copies! Anyway, I know that I know that I know that things could be a lot worse. I am not doing as bad as some others are, but I'm SOOOO frustrated by the whole thing. Anyhow, thanks for letting me unload AGAIN! Susan
Thank you both for listening. I went out and walked my dogs to try to just get away from it.
I think you and the rest of us who are in this mess should have our own giant pity party!! I am so sorry about your records. Maybe helping you could help me. Forgive me for not remembering the exact details, but I know you've treated seven times? I just had to go through a whole bunch of record-gathering a couple of years ago, stuff that was 20 or more years old! If that's the only thing stopping you from getting in, then there's got to be an alternative! For example, the first time I was ever on treatment was a clinical trial with monotherapy in '98. I don't have those records, which is what I say when asked for them, and I'm told it's okay, they're not needed. Let me read over your posts and refresh my memory. You want to get into a VX-950 trial like me, right? I don't get why these records would be stopping you.
What I need is a good cry. It just won't come. While I was out walking my dogs I was thinking back to the first time I treated with Dr. Kilby here in Maine, and I wanted Infergen, not Peg. I'm 52 now, so I would have been ... mm ... 46. I showed him stuff I'd gotten off WebMD HepatitisNeighborhood.com and pushed for the Infergen, and he said he didn't know enough about it and refused to give it to me.
I wonder where I'd be now if I'd gotten Infergen then, six years younger? Cleared? Would I still have developed retinopathy and high blood pressure? I know it's no good to look back, but maybe I should have switched doctors then! If I hadn't cleared on the Infergen, at least I'd only be a two-time non-responder instead of a three-time. Does it make any difference? I don't know! Uuuggghhh! I HATE this f*#king virus!!!!!!
I agree, I hate it, too. Yes, the whole reason I was turned down for Vertex was the stupid records. I passed all the physical stuff. Stinks, huh? I have a sneaking suspicion that I'm going to hear the same news for this time of trying #2, tomorrow. I'm expecting that call. The last time I was turned down, the study nurse, didn't call, didn't call, few days went by and I finally heard the news, no - because of the records. Didn't matter that I had a whole huge amount of records that I sent to them, it wasn't the detailed -visit by vist, note by note from the doctor who treated me with the Peg. Sigh.... I can't talk about it anymore tonight. I just need to give it to God and give up.
Hey there. I'm so sorry you two have had such a time with this for so long. If I could give my appointment or slot to you for 796, I would. I think there are those more eager to do this than I am, and - if I could give it away - it would probably make it a lot easier on all of us. I know what not getting in feels like, and I had actually become comfortable with it (or at least settled into it), and it's been .... well - it's been kind of unsettling to have gotten the call (as strange as that might sound.)
Some how I got in the VX-950 trial at Hershey , Pa. I know I am getting the peg and ribivirin. The VX-950 I think is real , getting some different sides than I got with the 48 weeks of peg and ribivirin. Was told to take the VX with food, did not do that one time and really got a queasy stomach. Also started getting rashes which I never got on the regular tx. I go the Hershey once and week , sometimes they take a couple of vials of blood other times they take 6-8 vials. Not sure when I find out what the deal is with the VX or what my viral load is. One thing the the beloved virus did for me is bring on diabetes. Now for some reason my sugar numbers are staying near or at normal level with no or reduced meds. The nurse at Hershey said it could be the VX is reducing the inflamtion in my liver to the point helping with the diabetes, who knows. Really tempted to go to a new doc and get some blood work done to find out how the old viral load is doing. If I eat like some cereal, crackers my stomach is fine, not noticing any othe sides. Actually this time around the sides to the peg and ribivirin do not seem to be as bad, still not a walk in the park. If you go on Vertex web site the success rate is really something. This stuff should be on the market soon after the trial is over. Hershey has 10 people on VX and none have dropped out because of sides. Hang in there the calvary is on the way
Thank you guys. Chcnme, I'm really touched by your offer to give up your slot. I've actually had the same thoughts as you, though, about VX-950, as far as what would be good for all of us. If I get into PROVE 3 and have to quit for any reason, that has to be reported to the FDA and will only slow down the approval process for all of us. I just don't want the FDA approval to come like in five years, and after reading here I'm even more scared of developing diabetes.
PKI, I'll check the Vertex web site, but I already believe it's going to be the new cure. Keep us posted on how you guys are doing!
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