monday is my screening

[Mary4now]

oooh oooh I go to the med center Mon. to start my screening, any ideas about what I might want to ask?  I should ask about rescue drugs right? then I should ask them to make sure I get the PI, hee hee,
I'm sure I'll have a lot of questions after the screening,  this is making it so much more real..... darn it.  I will look over the protocols tomorrow and then hi ho hi ho its off to the clinic i go.  This is the medicine Buddha mantra, I will be saying allot of this mantra.
Tayata Om Bekanze
Bekanze Maha BeKanze
Radza Samudgate Soha

[Kathy73]

I'll be praying for you Mary.

[Marcia2202]

All the best Mary, I really hope you get into the trial!!!

[Mary4now]

No, I did not know that,,,, that is great news ( if one has the CC allele )
thx again
Mary

[Susan_1a_CC]

I know that you're a 1a.  Did you know that if you happen to have the CC alelle that your odds of clearing just with SOC go up to 80%?

[Trish77]

"I was in a double blind trial and we knew all the results, it was just blinded to whether we were getting the real drug or the placebo "

Can-do, you're right.  That's actually what's meant by double-blind on a trial.  That neither you nor the trial team has any idea who has the real drug or the placebo.  Nothing to do with results.

My trial was double-blind and I knew my VL all the way through.  Thanks for correcting that, don't know what I was thinking.

[can-do-man]

At the end of the entire study.

[willbb]

To: Cando

When were you given the results of the real drug or placebo,when YOU were done or the end of the entire study?

WILL

[can-do-man]

I was in a double blind trial and we knew all the results, it was just blinded to whether we were getting the real drug or the placebo

[willbb]

Double blind means they don't know the results and neither do you.  

______________________________________________________________

The one I am in the vl is released at 12 wks. and every lab done thereafter ,as Trish says vital for you to know that.

Let us know where and when the massages are!  

WILL

[Trish77]

Double blind means they don't know the results and neither do you.  So thinking they won't have results to give you because they won't know either.  So good to ask at what milestones you'll be tested for viral load and also at what milestones you'll know what it is.

Good luck with this, Mary!!

[paen53]

"wish i could give you all a massage" Look out you guys, I'm moving to the front of the line....:-D

Hope all goes well for you tomorrow, Mary - that you get in the trial you need to beat this things, and for smooth sailing during tx. Hang in there and stay positive!  

Pam

[Mary4now]

As far as I can tell the study is a double blind w/ 3 arms, I think the first arm 50% will get the protease and polymerase Inhibitors w/ SOC, the second are one of the PI, one placebo and SOC, the third arm placebo and SOC.
I will ask about the lab results.  I really need to go over the information they gave me with a fine tooth comb tonight.  
I have been getting home late and tired and taking care of dogs and blah, blah, blah, but as usual last minute I will look at all the info before tomorrow.
I cant tell you how much I appreciate your help.
XXX Mary
wish i could give you all a massage

[Susan_1a_CC]

Just want to wish you all the best outcomes and the ability to be with what is for you.  Will be thinking of you Monday.  (oh, and even though the study is double blind, will they be giving you any lab results along the way?)

[willbb]

Mary...I would doubt that just because you may not be tested positive for the 1L28B that they would exclude you from the study..however I apologize I can"t remember the study you were  thinking of entering..was it for those pos. for 1L28B geno only?

Your screening will certainly have a lot to do with their acceptance of you into the study as well as your own desicion to enter.

WILL

[imhermom]

Thank you for the mantra, I plan to use it.  Ann

[Mary4now]

Hi,
since they are going to test  the allele I'd like to know if they will do the tx if I'm test out as not a good responder.
Will, it is double blinded,,,, so I think a lot is going to depend on my screening, and my results as to my final decision on this study.

w/ gratitude
Mary

[willbb]

Hi Mary..Ginger brings up a good point..write everything down as you think of  between now and then,its easy to forget when you are there.

Yes..1)  do they use rescue drugs(andhow low to the levels have to be before that happens)2) what is their protocol to cont. in the study in other words what log drop do you need to achieve to move forward. 3) their time frames to assess those levels..2wks. 4 wks. 6wks.
etc. I can"t remember if the study is blinded or not if it is 4) when do they first give you results of viral load 5) how do they make the desicion on how long you tx.

These are just some of the questions I had,and I"m sure some others may think of some to add.

Hope it all goes well with you tommorow and good luck!!

WILL

[blondie717]

Good luck Mary, I hope you get a good trial. write down your questions, or you will forget alot of them and you will have lots of questions. I use to take a recorder so I wouldnt forget what a doc or lawyer or who ever was talking about stuff  I was suspose to remember...
    I hope you do as well as I am. You might of seen me complain a few times. I had bone pain for 3 nights, it went away. (and I think I kmow why I had pain WBC going from low to up a bit, creating marrow or vit D) and I had a sore mouth for 24 hrs, but it went away and has not returned. Im 9 weeks in, and all I have is a rash, that does not bother me...use baby oil after bathing and drink lots of water. Try and drink it all early in the day or you will be up in the night tinkling. And thats all ive had for problems so far. So I hope you are lucky....Oh hey I even have even more get up and go....And sleeping like a baby other than those 3 nights.... Ginger