1 week R1626 results - help with interpreting pls

[Trish77]

My first week results on the R1626:

Baseline:

VL  2,100,000 IU/ml
ALT  45
AST 31
HGB 132
WBC 6.4
Platelets (which refers to what?)  276
ANC (Neuts?)  4.52  (why is everyone else's in different numbers like thousands?)

1st week
VL 3.06 E5  - what the heck is that?  She said 500,000 IU/ml approx
ALT 27
AST 22
HGB 129
WBC 6.0
Plat  300
ANC 4.10

I'm stunned at the drop in my ALT/AST level - it was never all that bad but .. wow.  

Not much change in my HGB .. which is good in the one sense... and in the other sense.. looking at the low drop in my VL (at least seems low to me compared to others in this trial and others not on this trial) makes me wonder if the Riba is doing it's job.  I'm so sick of peanut butter it isn't funny and it's one of my favourite things.

I'd appreciate some help understanding this, please.  I confess, I'm tired and lacking the patience at the moment but I want to understand.  A long day at the hospital, long day driving through rush hour to get there and rush hour to get back, 8 hours in all ... and I confess....the seeming low drop in my VL has me just a wee bit down at the moment until I can do the necessary attitude adjustment.  I know it's just week one ... was hoping for some of the spectacular drops I've been reading about.

Thanks for your patience.

Trish

[Emilio44]

Thanks, you both make some good points.  I will receive my next vl in about 1 week that is from my week 8 bloods that I had yesterday.  I could just pull the plug now however, Roche is offering me a 48 weeks SOC if I fail at 12/24, so I really need their drugs and may need to hang around. In Australia we only get one tx opportunity through our medicare system and I don't want to use that opportunity up just yet. I still have hope but the next result will be the clincher.  At least I'm giving my liver a break and **** happens you know. Regards Emi

[dointime]

It happens often enough in trials that the goals of the participant (SVR) diverge from the goals of the study (to study the study drug combo).  Your study doctor is paid for every participant that he takes through the trial, therefore he is not impartial and his advice will generally be in line with the guidelines of the study, ie. not necessarily your best chance of SVR.  So now is the time when you should be doing your own independent research to at least inform yourself on what would be your best options for SVR, should your VL numbers go up from here.  

dointime      

[dointime]

"Am I a slow responder or someone who just didn't have enough bullets? "

That's a good question Emi.  I am sorry to say that I agree with you, your week 6 result does not look good.  If it were me, I'd be considering my choices right now but it's not easy.  I'd want to be sure that I was getting enough bullets, and we already know that you are light on the riba.  But to do that you'd have to switch to SOC and forgo the possibility of getting the trial drug.  

How long before your next VL result?  If the number is the same or higher than your week 6 I'd take that as confirmation that what you are getting is not working and I'd have a planB ready.  But that's me.  Either way no guarantees.  Sometimes this whole business just sucks.    

Good luck
dointime
                  

[Trish77]

Hi Emi,

You make a good point, that if we were on regular treatment, we wouldn't know what the weekly ups and downs are .. we'd get milestones.  It's a bit torturous getting weekly results in one way but particularly when they're up and down like yours are.  I read back to your past results and you didn't go up as much as the other times and if you can take any solace in that at all, you went up less than half what you went up before.  I will be happy to see UND for you, however you ARE STILL IN THE GAME.  You are doing the best you can ... and try not to let this eat at you.  I finally had to step away from obsessively going after my results.  I'm taking my meds, have altered my life habits, I'm doing what I can .. and I'll tough it out.

I go in the morning for my own results, about 12 hours from now.  

You stay strong too, Emi.  I'm thinking of you.

Trish

[Emilio44]

Well not so good news VL wk 6 207,000. Down, down, up, down, up - there seems to be a battle raging within me and while this result is very disappointing a can't remain negative about it as it is only week 6.  If I were on SOC all I would know would be wk 4 VL 57,000 and would think that I'm going okay.  Anyway if this is not going to work for me then I hope that its at 12 weeks rather than 24 so that I can switch straight over to SOC and do 60 weeks rather than 72. If I am correct and I am on 90 PegIFN what do you call someone that doesn't respond at 12 week?  Am I a slow responder or someone who just didn't have enough bullets?  Heaps of stuff going on in my head ,all a bit negative a the moment and I probably shouldn't be posting.  Maybe all I've done here is develop a resistant virus, who knows?? This is like water torture.  Trish I went a day early to Sydney because it is ANZAC day here and a Public Holiday. Stay strong. Emi

[Emilio44]

Good to hear from you both, things are still going okay for me with tx sx.  Hanging out for my wk 6 pcr (bloods he he) like you Trish and an 8 hour round trip to Sydney tomorrow.  SC so so close to UND, definately next result! I've been saying for a while now I believe I'm in group F and still think so.  Maybe E I hope so.  So I've had a 1 log drop each fortnight and if that remains true then hopefully I should be somewhere around under 5,000-10,000 at wk 6 anywhere around there would be a fantastic result for me.  While I have a degree of brain fog I really think there is also something that is good about what tx is doing to me.  Hard to describe but it's around being forced to think in a more organised, processed and measured way I guess.  Not to mention the empowerment of doing major harm to this virus.  I'll have to give some thought to my Australian winners prize, vegemite (too salty), kangaroo, crowded house cd (do you know of the crowdies, maybe not), didgeridoo.  Anyway stay strong and talk with you soon. Regards Emi