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

[Trish77]

Hi B.!!  I'm relieved to hear from you actually .. been wondering how you're doing.  While I'm sorry to hear you're getting the "sheep" kicked out of you somewhat, I was incredibly thrilled to read your Week 8 results...I read your note right before I went to work this morning and couldn't respond .. but did sit there staring at the screen just feeling so very very pleased for you.  What terrific news to start my day on and thank you for sharing that.  

Sorry about your general nausea .. not so fun...manageable but not so fun.  Hard to come up with food to eat with my riba and XYZ these days because very little is appealing.  Ah well.  I knew there could be days like this and so there is.

How are your "bloods" holding up?  (Forever dubbed as "bloods" thanks to Emi. :)

I hope your folks had a lovely time in Costa Rica ... and even more .. I hope things went okay with you breaking your news to them.  That would be a tough thing for both of you and I'm glad that you have good results to share with them and a reason for them to be hopeful for a good outcome for you.  So nice that you had a week of feeling good to spend with them.  That's awesome. :)  

Emi ...... how are you holding up?  Week 6 results for us this Friday.  Not as chomping at the bit for results as I usually am.  What will be will be and I figure .. no point in me getting bent out of shape one way or another til I know which way I need to bend. Already did that.. learned my lesson.

Good to see you, B. ... you have been in my thoughts.  Hope you are well, Emi.

Trish

[StainedGlass]

return from the vortex...
greetings trial buds. et al
Have had a whirlwind couple of weeks and haven't been able to check in.
But first thing first...
Trish, Emi sorry to here you didn't make RVR.  I know you weren't holding onto that to hard Emi but Trish you seemed so close.  It is hard not to invest some emotion in the 4th week as it is such a strong indicator of success in the end.  And as you say Emi - what about wk 5,6... I guess you both have wk 6 coming soon.  UND - the sooner the better!  
Emi I hope you have m
anaged to get your Riba dosage upped.  We seem to be following the same weight except I managed to squeak into the upper dosage with 75.5 kg at base line.  I am currently at 72.5kg but they have told me they will not change my Riba dosage unless I have some very dramatic drops in my Hemo.  I was wondering,  does your nurse actually read the scale?  You made me think - I usually just read the scale reading out to the nurse and she marks it down. ;)

Well the week immediately following the lifting of my dose reduction was by far the toughest so far for me.  24hrs after my Peg injection I felt a tap on my shoulder and whisper in my ear " I'm Back!  You little boy, go lay down on the couch there while I kick some viral butt..."  It was all i could do but get up to get food in me and go to the washroom for 2 days.  Along with that came a full week of very intense chest pain.  My study nurse had mentioned it earlier in the trial that this is a SX that some people in the trial had been getting.  I don't know if there is an official diagnosis but she discribed it as a "type of chest wall myalgia."  Intermitent sharp pains moving around my chest, front and back.  Managed to get through the work week and my wk 8  VL test which came back at 54!  Wk 6 was 1410.  Not UND but at least it seams like the painful week had a payoff.
The next week - almost nothing. Which was great as my folks were just returning from 5 months in Costa Rica and I had yet to let them know about my health status as they were away when I was diagnosed and  I did not want to inform them from such a distance.  
In general I am feeling like the Riba is hitting a deeper saturation.  Like you Trish, there is a general nausea and eating is getting to be more of an issue as I will start out with great ambition and quickly loss my appetite and feel like I have to force myself through the meal.  Having to be conscious of keeping my weight up and that has never been a concern for me.  
Hope you are all doing well.  Finding rest... and kicking viral butt.
cheers
B

[willing]

>Not a lot of published data on weekly viral load testing
you OK Jim? not yourself lately...

>Here it comes, you ..
that's the spirit! onwards..

[Emilio44]

Well I guess what I meant by my reference to 4,5 or 6 weeks was that while they have measured the effectiveness of UND at 4 weeks against svr but probably haven't measured the same for 5 or 6 weeks (only against 12 weeks).  With regards to the riba increase, I think I will just wait and see what happens.  I will get the increase at 24 weeks once we go to SOC also an increase in PEG if my hunch is correct.  That's assuming that I respond.  My concern with this is that if I'm going okay on a reduced dose of Peg and continue to be UND at 24 weeks.  What would be the point then of doubling my peg dose (there's nothing to kill) and increasing riba with the likelyhood of further compromising my immune system at EOT.  Can't stop thinking of HR's discussion around tappering and the 'immune deficiency window' at EOT. Maybe the post 12 weeks is just as important as the first 12 weeks.  Is it correct that if we get to EOT UND then we have a 75% chance of clearance.  You're almost there Trish hang in there.  Take care Emi

[Trish77]

Well correct that... 615 - 448 = a drop of 167.  Math is a little off.  

[Trish77]

"Anyway what is the difference between UND at 4, 5 or 6 weeks, I'm sure no-one has even measured the differences with regards to to svr."

Well, the impact of being UND at 4 weeks has been measured and that's where the RVR comes from and why you're considered RVR if you are UND at 4 weeks. Statistically, the chances of SVR go up dramatically if you are UND/RVR at 4 weeks. Neither you nor me nor SG are in that category.  

I think it was simply assumed by me that it would be a piece of cake to drop from 615 to UND in one week based on my previous numbers.  I wasn't expecting to drop by only a mere 200 and a bit little virons.   So .. what I have learned.. is that it ain't over til it's over.  And NOW when I take my Week 7 INF shot today, my riba and my XYZ...I'm going to be saying "Here it comes, you .. " well I'll insert my word of choice there!

I also keep saying to you and SG .. well, it's early yet and encouraging you to keep your chins up .. so now I take my own advice, eh? :)

Sorry for your riba troubles, Emi.  I'd push that a bit too.  You're no further behind.  You either get the yes for pushing or the same no you've already got.

Take care, Emi.

Trish