My Mayo Clinic appt,

[susan400]

I went to Mayo Clinic today.  I saw the gastroenterologist and then, the Gastro/Hepatologist.  The plan right now is for me to just keep on taking a break/breather off of treatment until the new protease or polymerase inhibitor trials become available for non-responders (hopefully) sometime in the next 6 mon.- 1 year time frame.  I'm sort of glad about that because I'm wanting to let me body recover from all these treatments that I've done to it.  So, for now, I'm just going to keep on following with my regular gastro. in Lakeland.  Mayo's is going to send a letter to my gastroenterologist and also take a look at the slides from my 2 biopsies that I brought up there.

I just wanted to catch you up, those of you who have been keeping up with me over the last several years.

Susan

[trisha1234]

Hi I am kinda new here.   I was on this site a few years ago then stopped.  I have end stage liver disease.  Your location caught my eye.  I live near Orlando nearer to Lakeland.  I have been teaching school for 16 years and I am on disability since Sept.   I will be retiring at the end of this month.  Wish that I could teach forever.  I love my kindergarten class but I get soooooo tired out I hardly made it home at night.  Is there a good support group for Cirrhosis patients in our area?  Good luck, I also went to the Mayo Clinic for 18 days for a transplant evaluation but they said that I should wait a little longer and keep seeing my G.I.   Do you have any imput?   I will pray for you!! Thanks, Trisha

[Forseegood]

Im sure you'll enjoy the break! best of luck with this...

[susan400]

I don't know whether Shands, or Mayo's or any of them is one better than another until they can get to the point of offering the new Prot. Inhib. or Poly. Inhib., to us.  I think that they'd like to offer them to us now, but as for non-responders, very few will get that opportunity any time this year.  For now, I'm just going to TRY to get back to normal, whatever that is.  Yea, I had a nice breakfast with Carolyn aka Pasoperson!  Yes, I do live in Central Florida.  Thanks everybody, for all of your support.  I don't know that I've been all that much of a supportive person, but if I have then, I'm glad that I was able to be.  Take care everybody and God bless.

Susan

[APKhaos]

Us 260-odd brave and selfless VX-950 lab rats in the current Phase II trial are putting it on the line to prove that it works. [:-)] In fact, its its just six weeks or so before the first subjects are unblinded. Exciting times.

There was a ton of polymerase and some protease inhibitor material presented at the AASLD conference last week.

You might want to keep an eye on the planned VX-950 trial for non-responders that is scheduled for early 2007. IFIAK that is the next US-based trial. Europe gets a VX + Inf [no Riba] trial in around the same time frame.

[cigaso]

I admire your courage. I know you will lick this thing.

You sound like you are from the Central Florida area, as I am. Did you go to the Mayo clinic in Jacksonville? Have you tried Shands? I am asking because my Gastro wants to send me to Shands, but maybe the Mayo might be a better choice.

[tulsatime]

I am glad you are able to take a break too. You probably do need a break. I hope that trial is just the ticket for you!! Take care of yourself and I will be praying for you. Hugs, Debi

[PasoPerson]

Your doctor told you:  "sometime in the next 6 mon.- 1 year time frame".  I hope so.  My doctor told me three years.  I hated to hear that.  Here's hoping Mayo knows something Shands doesn't, LOL.

Anyway, in the meantime you can come over and go riding!  :)

Oops, forgot to tell the world, on her way through Ocala the other day Susan400 and I met to (what else?) EAT breakfast.  It was so nice to put the face with the posts I read from her.

[goldyn]

Im glad you have a plan of action ready to go , I agree you need to heal up for while , then your body will be ready for a grand attack and kill of all those lil buggers.....

Blessings and prayers to you
         goldyn

[strator]

Good thoughts coming your way Susan. Your heroic battle and perserverance on this field has inspired many of us. I'm in awe of your ability to get back up and go at it again. Prayers for that day when this virus surrenders to you. I know one day in the future, the little buggers,in the h*ll you chase them to, will whisper your name through gnashing teeth to the last stragglers as Susan the Valiant.
Be Well,
Don

[Kalio1]

Your tenacity in fighting this virus is so admirable. I am glad you are taking a well deserved break. I hope you are the first one in line when newer improved treatments come along!
I hope you feel better every day and can enjoy some tx free time.

[Myown]

that sounds good! you're gonna beat this thing! we all just have to keep praying for one another and we will all have the victory!You have strength that only God can give and that in and of itself is an inspiration and proof that there is a God.

[FlGuy]

That's great and I hope you continue to feel better.  As you speak to the gastro, or any other doc for that matter, keep them on their toes about the follow through they need to do to keep your case in active play when those pi's come out in futher trial. Try to push those opportunities yourself, if possible. Feel Better!

[mikesimon]

If you're happy then I'm happy. You're going to get there Susan - as much work as you've put into this you've got to. Good luck. Mike