abbreviations used here

[tulsatime]

I noticeed a lot of new people posting, so thought it might be time to post this again. Hope everyone has a great day! Debi

PCR: polymerase chain reaction(viral count)this test we some times get at the 4 wk,12wk and 24wk during treatment to see how or if our viral load has gone down.
Tx: treatment
SX: side effects
BX: biopsy
HX: history
VL: viral load
EVR: early viral response
RVR: rapid viral response
SVR: This is what we all want = sustained viral response
AST & ALT: liver enzyme
WBC: white blood count

Others will come on and give you more if I forgot some.

[pln]

thank-you..

[Mister beagle bailey]

I was just about to post the abb. for the newbies.  LOL

Here are a few more:  DX: diaganose's
                      GGT: gammer glutamil transferase
                      ANC: absolute neutrophil count

Beagle

[tulsatime]

I beat you too it. LOL

[roaming]

I know we are to watch the reds, whites, hbgl, and neuts but what is the ggt?

[pln]

Help! I called my study nurse to find out 2nd week lft. alt down to 26, but my hbgl is 10.1, she is going to run it by my DR to see about riba reduceing. I am now taking 1200 a day. what should I do.

[pln]

and what is normal hbgl number? Thanks

[Mister beagle bailey]

I would talk to the dr and get procrit approved so your ready to go if you need it.  It takes  a few weeks for the procrit to kick in.

Beagle

[pln]

In my study we can not have any recuse drugs untill week 12! do you think the riba reducing will work?

[FlGuy]

Tricky situation.  Do you know if there are specific guidelines in the study for dose reduction, minimum level they will let you get to? Usually at 10 you might feel some effects like tiredness, headaches, ear ringing but it might depend on where you started.  Did they establish a baseline before tx started?  People here report that the more significant is the drop (ie a drop of 16 to 12 maybe be more impacting than a drop from 12 to 10 for example).  You are about at the spot (3 weeks into riba) where effects are noticeable.  For comparison my baseline hgb was about 16, and that was in normal range for me.

[pln]

I started at 13, I am really scared now I feel o.k, well I did untill I called my nurse. I guess I will not know any thing untill monday. do you think I should keep taking 1200 a day?

[pln]

and I am really sad, my hair is all ready falling out! I need some encourment

[sfbaygirl]

It sounds like your Hgb didn't drop too much. If you are feeling good, then I would try and stay on the higher dose of riba. The first 12 weeks are the most important. I started at 16 and went to 11 and couldn't walk down the stairs. You may be okay at 10.1. Do you get labs every week? If so, if they drop more and you feel like a corpse, I might reduce or get the procrit if I could. It's really not fair that they put you in such a predicament.

Sorry to hear about your hair. I haven't had the pleasure, yet. I have heard it grows back even better!

Big hugs to you!

[GrandmaA]

Thanks Debi for the abbrevs. Very kind of you. What does LOL stand for? Sometimes Lots of Luck doesn't fit.

[sfbaygirl]

LOL= Laughing Out Loud

[NYgirl]

Whatever you do DONT let them reduce your dosage unless you have tried the Epogen and it doesn't work!  The most important thing according to both of my doctors is to not have any reduction - especially in the beginning.

If you doctor WONT prescribe epogen (procrit) then find someone who will.  But DONT REDUCE THE RIBA it's IMPORTANT!


PS Good news on the lowered liver enzymes...it seems to be working wooo hooo!

[Kalio1]

Hang in there! It could level out. I think it is pretty ommon to have a substantial drop in the first few weeks. I know I did and I have not taken rescue meds yet. Mine dropped from 13 to 10 and has remained lose to 10 much of the time and now is 11. I am nearing the one year mark. I now the hair shedding or falling out freaks you out at first but usually isnt noticeable to others. I would try to stay on the Riba you are on but just listen to the doctors and do as they say it could be lowering it a bit wont harm anything and will help you stay with the program. That is one downside for you that they dont allow rescue meds until the 12 week but as ong as you stay above the "danger" range and you an mudde through feeling so weak you should be ok. Do they tell you your VL or if you are UND yet? I think lowering the Riba is less important if you are already UND but talk to the doctors about all of this and see what they say. Be sure and tell them you feel OK even with the drop in Hgb. Try not to get too stressed out over any of it, stress makes things much worse. Try to stay positive, Hgb does fluctuate, mine goes up and down up and down. So ong as it doesnt go TOO far down you will be ok.

[Kalio1]

How are you doing? Good I hope! Pln is in the VX950 trials and so he can't take rescue drugs until the 12 week in the trials, that is why he is worried I think.

[NYgirl]

Oh I saw you only started at 13 (didn't read before no rescue meds).  So you've REALLY only had a 3 point drop.  You can't ALWAYS go by strictly the NUMBER you know.  It's more a how much and how fast it dropped thing than just looking at one number.

I'd take Kalio's advice and take another CBC next week and see where it is before I'd let them dose reduce for sure.

At 1200 that is an awful lot of riba - maybe it would be ok.

GOSH trials...I could NOT have made it without Epogen (had a 6 point drop in 10 days. It was BAd. Kept fainting ugh).

[pln]

Thank you both, I have been sitting here in tears , I am scared, but you made me smile, I am a girl.. LOL

[Kalio1]

Oh sorry!  I owe you more sympathy on the hair falling out thing then! I think it is harder on women than men, it is hard to take when it first starts but it does get easier believe it or not. Also your Hgb isnt too too bad for a woman, those numbers would be a lot worse if you were a man, so that is good news! Men have higher "normal" Hgb numbers than women so a man at Hgb 10 is worse than a woman at 10.  The stress can get to you at times and I imagine being in a trial makes it all even MORE stressful. Hang in there, remember today might suck but tomorrow will be better!

[pln]

Thank you so much I feel much better, monday is the start of week 4! I have to make it to week 12! .

[FlGuy]

Without sounding too personal, how much did you weigh at the beginning of the treatment?  As you've read here over the last couple of days riba dosing is usually weight-based. But not sure what dosing concept they are using for the vx trial. All along I though you were a guy. Stupid me, making assumptions on nothing.

[tulsatime]

I agree with the others. Keep your chin up. Things will work out, even if they reduce.
I will say a prayer for you! God Bless, Debi

[NYgirl]

I have lost about 60% of my hair and believe it or not...nobody here at my job has really even NOTICED. Since it comes out slowly (even though it is handfuls in the drain every day)...I guess it doesn't seem like a big deal.

You know we endlessly obsess about ourselves. I always go oh no did I wear these shoes yesterday?!  Stuff like that when NOBODY in the world would remember or have paid any attention to anything about ME.

I can tell you that I AM going to get a wig. Most insurance does cover up to $500 if you get a letter from the doctor - now that I'm going to continue from 48 weeks to 72 and it will be winter again...it won't ROAST me to have it on!

I can't wait!  It will be so fun to pick out my color and length and style!  WOO HOOOOO!