Response to my post from a few days ago

[prettydamscared]

Hi everyone, This board moves so fast now...my original post is on another page.  

Hi Willows, about swelling, my fibrosis score was 0 so I can't attribute it to poor liver function and yeah they check for thyroid on all blood work, except now that I'm finished. My guess is some reaction to a medication and I have no idea if it's treatment related. I would think not.  It doesn't come and go, they're always swollen.

I'm not sure when you'll get your script for teleprevir but I am fairly sure that you will get it.  I think significant news about Prove 1 study results will be released in November and I'm not sure where the conference will be but my study doc mentioned that to me when I asked him if he was excited about Barcelona a while back.  His response was "we always kind of know in advance what they're going to release so while it's exciting to go to Barcelona and hear all the latest, that wasn't the big one that we're all waiting for."  He mentioned he expected that to come in NOv. 07.  We'll see.  I'm rooting for you too.

[lab-rat]

Hi pds - my plans are to continue tx and hope for SVR... I'm finally heading down the homestretch!  I'm currently on week 44 (control group) and am looking forward to being done.  Since I didn't get the real vx (nor the early clearance) my odds aren't as good as yours but I'll just have to wait and see.  

There's some confusion as to whether I really went UND or not by week 12 - I've flip-flopped between the "dreaded 29" and "<30 UND" from week 8 to week 16...but have remained "<30 UND" after that...so who the heck knows?  

Anyhow, I hope your ankles are feeling better and good luck getting back to normal after the long haul!

[Libzo]

Like a ray of sun through the clouds - your communications give me a handle on something so overwhelming.  I bow.  When NIH Clinical Trials declined my participation (pegasus twice a week with riba), Metro Research in Fairfax popped up (Albumin Interferon byweekly with riba).  I had a liver biopsy there July 5th and am scheduled to have my first shot July 20th.  Wow.  That really feels good to say.  So why do I want info about Vertex?  Can I get a sure thing?  Of course not.  But can I hedge my bet with Vertex?  Both approaches have gotten good press but the success rate for Vertex seems higher.  

I figure I have until the 19th to change my mind and my treatment if I can find a Vertex trial in Va.  It brings me comfort knowing of other Virginia heppers.  This web site has given me so much.  I am alone here and feel I may benefit from a local support group.  Do you know of any or could we start one?  Feel free to contact me at ***@****.  

Thanks again for your tips.  The info arms me.  Just want to sharpen my sword so to speak.  L

PLN - Did you Vertex too?

[willows]

Boy, I wish I had an answer to your swelled up feet.  It's kind of ironic that you posted it when you did, my feet and ankles have been swelling up lately and it is most unpleasant.  Did some due diligence and decided to try dandelion root tea, now I'm not a big herbal fan, but I know ginger has helped with my belly aches and nausea, so I thought I'd give some dandelion a try.  Not only is it good for liver function (I'm an early 3), but it is supposed to be a good diuretic.  Taste doesn't rock my world, but I'll get used to it.

I did read something that surprised me, if a person is having problems with water retention, something that might really help is to be better hydrated.  Doesn't make sense, I know, but when I studied it a bit, I decided to give it a try.  And my doc kind of prodded me during my last visit about too much salt and being too fat.   So I work on both.

But if your ankles are swelled ALL the time, well, I think that must be a different issue than mine.  You are right, it is a *****, makes me walk like an old lady and after a while, it can hurt.  Whine, whine.  

But I do not think my issue is as serious as yours, hopefully my dandelion root will help, plus throwing the chips out the window, giving up the salted sun flower seeds and losing about 30 lbs of flubber off my butt.  And here's hoping you will find which drug it is that is messing with your feet.  It is a GREAT excuse to put your feet up and watch the tube or read!

Here's hoping your issue is resolved as easily.  Take care.

[prettydamscared]

Hi web52, I've been noticing that our treatment dates coincide also.  Best of luck to you on your 2 week pcr although that one will probably almost definitely still be negative.  It's the one after that that gets you biting your nails and jumping every time the phone rings.  Congratulations on finishing and I'm really looking forward to hearing your results too.

Libzo, SOC means standard of care.  That's just the standard 48 weeks of interferon and ribavirin.  I treated at Johns Hopkins in Balto.  I think there are 4 study centers in VA.  I could be wrong about that but that's my recollection.  You can get to a place on Vertex or telaprevir's site that gives you that info.  It seems to me that VA and Texas were the only states that had 4 study centers.  

My study nurse at Hopkins told me about a month ago that all their slots at Hopkins were full.  However, I was not the ideal study patient and I don't think she would tell me if she had 50 spots left.  She wouldn't want anyone that I referrred.  Just kidding about that but not really.  The # that I called to get into the study at Hopkins was 617-444-6777.  That # then referred me to my study center #.  It really is just a matter of being in the right place at the right time.  Find the place that lists all the study centers in VA and call them all.  Post to PLN and ask the # of her study center in Richmond.

Hi APK, It's good to hear from you.  I completely agree with you.  You and PLN lucked out getting into the 24 week group.  I believe that the longer lasting sides, perhaps even permanent, mostly happen in the last 24 weeks.  Like Jim once said, get in and get out as quickly as possible.  I seem to have some crazy neuropathy or something in my hands.  They are numb every morning when I wake up.  That pins and needles feeling comes and goes all day....it feels a bit like corporal tunnel (sp?) and I have no answers to the football feet as willows called it.  It's all worth it though if we get the coveted SVR.  How are you doing.....pretty much back to pre-treatment or better?

Lab-rat, thanks for your congratulations.  I did clear pretty early, 22 days, but it's still such an anxiety producing experience waiting for results especially the 1 & 3 month results.  What are your plans now?

Mremeet, I've been wanting to talk to you.  I missed you yesterday but will call one day this week.

Char