Update on Prove 1 study patient & question

Hi everyone, I haven't been on here forever...just wanted to do a quick update.  I just have a minute but if anyone asks anything, I promise I'll be back tomorrow.  

I was in group B of Prove 1 (48 weeks with first 12 weeks being telaprevir, interferon and riba and SOC for the remaining 36 weeks) I made it to 42 of 48.  Hemoglobin dropped to 10.0 in spite of Procrit weekly and I just couldn't function at 10.0.

At 17 days post, I'm still clear.  That's still very early but I'll take a negative over a positive any day.  I go back July 6th which will be almost 5 weeks post.  That wait is giong to be much scarier.

I'm slower but surely feeling better.  Hemoglobin is taking a long time to rebound.  Here's the question part.  Since ending treatment, my feet and ankles are very swollen.  Has anyone else experienced that?

[willows]

Are you wondering if it is the teleprevir or just a general issue from tx?  I have been off of tx since 2003, had viral breakthru and only got to do 30 weeks, and I still have issues with my feet and ankles swelling up.  With my liver damage, I understand that I can't process salt as well as I should, so I have to watch how much of it I eat.  

Now, if you have cleared...and congrats on that if you have...I'm not sure why you should be getting football feet.  But I do know that it can take a year or two before all systems are functioning normal after INF.   Some of the folks here have had trouble with thryoid, have you had yours checked?  

Let me know what you find out......both the feet and the SVR.  We are rooting for ya and hope you get back to feeling fine and man, if it was me, I would be celebrating!!  I figure it will be about 2009 before I get my script for teleprevir.  I can wait....I am looking forward to it.  

Willow

[web52]

hang in there! i understand that it takes about 3 months to get back to "normal". i'm confident you will achieve svr. my hgb never dropped below 10.5 so i was lucky. im also in prove 1 group b, take my last shot on july 6th. best of luck to you and please keep us posted on your progress.

[Libzo]

I am incredibly interested in Vertex.   I am happy for your results but not the swollen ankles and feet.  I get that now and I am pre-treatment.  I was hoping that would stop once one got SVR.  My questions are where did you treat and how did you get into the trial.  I am in Virginia.  Brain fog - What does SOC mean?  Thank you.  L

[pln]

I did vertex, I am also in Virginia.

[APKhaos]

Hey Char!  Long time since we talked!

From what I'm hearing, the 12 weeks of VX + SOC followed by 12 weeks of SOC is the golden fix. Adding another n weeks of SOC onto that may help in some cases, but I suspect that will turn out to be a diminishing return once all the data is in. In short, your early termination of SOC should not have any downsides. Can't add much on the swelling problem, but the chances of you having a durable SVR are VERY high. The CURED word comes to mind, but its best to wait until the 24 weeks post-tx to throw the big party :-)

Libzo, that's a bit of a coincidence. Both pds & I are in Virginia too.  

[lab-rat]

pds - I don't have any answers about your feet, but I just wanted to offer my congratulations on finishing tx (even if you didn't go the entire 48).  From what we've been hearing from the other Prove 1er's there was probably no need to continue anyhow.  I recall you became UND pretty early on so your chances are great!  Good luck and I hope you feel better!

Libzo - from what I recall when I was trying to get into the Prove 1 trial, there were a couple of sites in VA - one was in Fairfax and I can't remember the other but it was close to Fairfax.  I don't know where you are in VA (that would make a big difference) - but there's also John's Hopkins in Baltimore.  I called the Vertex number that was listed in the clinicaltrials.gov website and they gave me some options that weren't even listed. I would call them. - FYI

[APKhaos]

If you are in or close to Fairfax, VA then get in touch with the Fairfax hopital Center for Liver Diseases - http://www.inova.org/liver/index.jsp

They are very much involved in clinical trials, including Prove 1 and Prove 3. Can't speak highly enough of these people. They introduced me to VX950 and the Prove 1 trial. I went there for a second opinion shortly after my HCV diagnosis was confirmed, and they invited me into the Prove 1 trial.  The rest. as they say, is history.

[mremeet]

Hey char, good to hear the first PCR was negative - the longest journey begins with a single footstep, and with your first post tx UND you've put your best foot forward. Sorry to hear about the ankles, not sure what's up with that. I know my ankles have been sore lately, but I've been physically working quite a bit (including jumping off stuff), so that's probably why I feel that way. Maybe it has something to do with fluid retention? Excess sodium maybe, just a guess though. Anyway, I'll call you soon, hope you're doing well otherwise. I go for my 6 week post bloodwork in about a week. That one will be the most worrisome test of my entire treatment. Not too wigged out about it yet, but I sure will be when my phone rings or the email comes in telling me the results. One way way or another we'll get through it. We're the three musketeers, one's already there, now us remaining two have to get to the other side too. We can do it, keep those positive waves flowin'!!