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]

Actually .. my baseline VL is something else, I guess.  My screening VL was 2,100,000 IU /ml.   My baseline VL three weeks later is at 1.65 E6 whatever that is.  Seems like quite a fluctuation between the two weeks.  Then Week 1 VL is 3.06 E5.

Thanks again.

Trish

[FlGuy]

Take a look at this thread.  In particular, the reference to Janis in the comment I posted.  But even better, look at CockSparrow's explanation several comments down.
So, even though you're tired you can come back to it a little later to wrap your head around it a little more.

http://www.medhelp.org/posts/show/457538

Congrats on getting through the first week.

I think that everyone else from Canada is down here.  Traffic there can't be so bad.

[Lady Lauri]

Fl...... I'm pulling up a post on breaking a tail bone?

Trish...no clue on that either??? Somebody decipher that!!

LL

[sldb]

Platelets are what cause your blood to clot. Your count is well within in normal range.  Great start at 300.  If iam am not mistaken Riba causes platelets to drop. I see you are doing the R1626 protocol and i have no idea what that is.(which drugs are included in the study)  Your alt and ast are in great shape also. Normal after only 1 week but you have minimal liver damage which helps, this is GREAT!!!! I see your hbg. is 13, but you forgot to post your hct which is probably around 38 or 39 judging by your hgb. You have Great starting labs, good luck.  How long will your tx last?  

[sldb]

Forgot to add that Neuts are a form of wbc that ingest microorganisms.  These are important b/c they fight off infection.  LOW NEUTS = LOW IMMUNITY  HI NEUTS = GOOD IMMUNE RESPONSE .    

[sldb]

I must have brain fog seriously today, correction Normal neuts = good immune response, hi neuts = infectious process going on in the body.  I cant post anymore tonight there is no telling what my brain will tell my fingers to type. Good Luck and best wishes.

[HARRYBEADS]

Everything looks good to me, and you dropped GREAT FOR ONE WEEK.Watch your HGB and WBC levels. The lower the HGB the lower your oxygen in take, so breathing rate increases and you will get the feeling you ran a marathon. Why I bring this up is your base level is a little low, 100 is the standard limit but ,the study may be different.
  Thought this study was about drugs that don't effect the HGB level that much, have you heard that?

Call your study nurse and get her email address, then send your concerns to her and she will answer ASAP. Mine got to know me well and would send scripts to the pharmacy, same day, and email me when blood work came in .

How are you feeling any side effects?

Harry

[Lady Lauri]

Elaine...good one! I missed that! That IS good for one week!!

Harry...agree on the NP e-mail addy. Also had mines cell phone and she always got back to me ASAP. She is great. Get a good relationship with NP!

sldb....lol. you sound like me on Liz'z post at 3 AM the other night!
Good info tho.

LL

[Trish77]

Okay...now that I've had a wee nap right after I posted that....

I read the post you referenced, read the Janis page, then opened my calculator on my computer and there is an Exp key and when I type in 3.06 and hit Exp I can then enter the exponent which, in this case, is 5.  Then it becomes, as per Cocksparrow's explanation in the thread you referenced, 306,000.

So my VL is 306,000 IU/ml, correct?  

Thanks for the congrats...I actually just started my 3rd week today ...did my third injection just before I posted that.  It's going just fine so far....aside from me being grumpy from a long day.  True enough...could have been worse .. thanks for diverting all the Canadians to Florida this week...they'll be back with a vengeance next week!   But then my appt is back to 8am instead of midday, easy peasy. :)

[Trish77]

Elaine, LL .... thank you for weighing in, appreciate your thoughts.

sldb ... no hct on my results?  There is:

ALT, AST, ALP, Bili, Alb, INR, Creat, Gluc, TSH, HG, WBC, Plat, ANC, HCV, Polyl/RBV

Does that make any sense?

The R1626 protocol ensures I'm doing 1200mg Riba daily, either 90ml or 180ml INF weekly and an unknown amount of study drug R1626 in amounts of either 0mg, 500mg, 1000mg or 1500mg bid.

Harry - 300,000 does make me feel better than 500,000.  I'm good with that for the first week.  I would have liked less but I'm okay with that.  Still three weeks of results to go until that 4th week.  Yes, you are right.. these study drugs more impact the WBC, so while they monitor the HGB, the concern for the study drug is the WBC.  

No real side effects....I haven't been looking for any and they haven't come up to bite me.  I've just been pushing through.  If anything, I'm working extra hours and on a bit of overdrive.  I never could slow down and life has been busy.  If I'm going to have sides, they'll have to knock me flat on my a$$ for me to slow down.  That's not to say that I'm not trying to fit in rest where I can, I am...but so far I'm good.  Mind you .. I've been looking forward to this weekend to just relax.  I've been pushing it a bit hard lately.

[Lady Lauri]

I never could slow down and life has been busy...............

That was me too!

My bet is your on 180 peg with that drop, but than with little sides??? Course 3 shots in hard to say. Intersting range in the 2 drugs.
I knew my dose's in it, think the curiosity would drive me nuts!

Ll

[StainedGlass]

Congrats Trish - after all is explained, it looks like you are doing well.  You are starting from a very decent #'s for WBC / Neutrophil.  Well above my baseline so hopefully you will have a bit more fight to avoid the dose reductions I have been getting.
I get the same neutrophil calculations but was told to drop the decimal point and ad a zero to get the common number.   Have you been getting complete print outs of your lab results?  I was wondering if they are using the same labs for the study.  My VL is being done by Cenetron Central Labs in Texas and my blood panel / chemistry is processed by Quintiles labs in Georgia.  I looked over my various VL results and the E5 / E6 calc. is not present on any of them and these are unedited reports from the lab.? Just tell them to tell it to you straight! ;)
cheers
B

[Trish77]

Hi B.,

First I want to say it is *so nice* to have someone to compare and discuss the ins and outs of this trial with!!

I didn't get any results last week...the usual trial nurse was away and her replacement didn't have any.  So I got caught up this week.  She's overworked...and getting worse.  I asked her for a copy of my blood tests as per usual and she balked this time, said something about paper costs so I took a copy of the ongoing chart instead.  I think I'll bring her a package of paper and a reasonable donation to cover the cost.. and tell her I would like the actual results please.  She didn't take my urine this week either..she forgot.  Not that big a deal...just that she's way too busy.   Good Friday is coming so she's cramming the Friday people in with the Thursday people.  I will have to put some thought into how I can get what I want without causing too much trouble.  Has to be a balance there somewhere, eh?  

Thanks for explaining on the neutrophil calculations.  I'll look at them that way.  

Yes, my VL test is being done out of Cenetron Labs in Texas and the other out of Quintiles Lab in Georgia.  So that is consistent...so I wonder why they then take those results and turn them into exponential form?  Strange.  Perhaps that's how they want them on the charts at the hospital I go to.  Odd.  Anyway...now I know how to do the calculations, thanks to the good people here...so I'm good again.

I guess I'm doing well....I would have liked the same drops as others..but it's still a good drop for a first week.  I'll see how it goes from here and it will be what it will be, eh?  Just like everyone.  

I'm spending the weekend catching up on my rest .. have been working 12 days straight with overtime in the mix .. that catches up to a person regardless of on tx or not, eh? :)

Take care, B.

Trish

[dointime]

It is interferon that is primarily responsible for the drop in viral load, not riba, although they do work synergystically.  Lack of enough riba in blood serum is more seen as a reason for viral breakthrough or relapse.

" Good Friday is coming so she's cramming the Friday people in with the Thursday people.  I will have to put some thought into how I can get what I want without causing too much trouble.  Has to be a balance there somewhere, eh? "

This syndrome of difficulty with getting copies of test results, and medical staff being  too busy, really hits a nerve with me.  You have a right to CAUSE TROUBLE.  You are giving your body to these people to be used.  You are risking your health and maybe even your life.  You are entitled to a minimum standard of care and in my opinion this includes copies of your labs and a nurse that is not too busy to deal with your concerns.  Clinical trials centres get paid for every person they treat so don't let them cut corners with you.    

I felt like you when I was going through my trial.  I didn't want to be 'a bother'.  Also I felt dependent on the medical staff and so I didn't want to upset them.  Now when I look back I feel angry with the haphazard way we were all treated.  Don't let any of these 'lovely' medical people fool you.  The trial is just big business getting done, so you should make sure that your end of it gets done too.

End of rant,

dointime.                

[Trish77]

That is my feeling... that I have the lower dose of INF which means some amount of trial drug.  I already know what my riba is.  That's not a secret on this trial.  However, I don't feel any side effects after taking my injection. Three injections does not a scientific conclusion make.. but that's my feeling. Then again.. I don't feel anything after taking the riba and XYZ pills either. It will be interesting to find out at the end.

I felt bad for her being so busy and we do get along very well. She knows I drive in from out of town and that I work, so she tries to schedule the appointments for 8am for me as often as she can.  I appreciate that, as it takes about two hours to get there due to traffic. She answers all my questions as much as she can.  When she was not going to be there on the one Friday, she called to let me know it would be someone else taking her place. Nice touch.  As for copies of things...my first appt, it was her who told me that my medical records belong to me so I'm entitled to copies of everything.  Since she *knows* I want copies of everything and she has to make one for my chart.. she might as well make one for me at the same time.  You are right.  It is not too much to ask to have copies of my blood tests each time I go.  Thanks for the rant.. I needed that. :)

Trish

[dointime]

I can't say I really had sides from my full dose interferon either, except red inflammation round injection sites.  It's the riba that's really tricky for sides, which happen slowly but usually manifest by around week 7.  That stuff is definitely psychotropic, I don't care what anybody says.  

I don't know if you can draw any conclusion about which arm you are in from your stats.  You had an almost 1 log drop in VL in one week, so what you can do is breathe a sigh of relief that you are getting a respectable interferon response.  Now you just need to maintain this downward trend to stay in the game.  

dointime.                

[Emilio44]

So does baseline of 1.65 E6 mean that you had a basline of 1,650,000 VL?.  Just trying to understand the E5 - E6. Regards Emi

[Trish77]

Yes, you have that right.  That was my VL the first day of treatment so that's considered my baseline.

How are you doing yourself?  No stats for you until week 12 or 24?  I can't remember.  Hope you are doing well.

Trish

[Emilio44]

No, the latest is that we will receive our results.  The explanation as to why I haven't received mine was that they are now batching 2 weeks at a time.  Doesn't make sense when I see what's going on elsewhere.  Anyway I wont push the issue, as things are still a little cold after me raising the issue of trial equity with regards to VL results being blinded.  This is a great site with some well informed individuals,including yourself.  It can get firey in here as well, I love it. I just wont a 2 log drop by week 12 (worst case scenario).  I'd love to know the contents of xyz.  Stay strong my friend. Emi  

[Proactive]

glad you figured out the vl given in exponential format...It is really quite simple. E5...move the decimal point 5 place to the right, E6, 6 places to the right, etc.

[Trish77]

Okay...now I understand what you meant by batching Bloods 1 and 2.  I'm glad to know that you'll be getting some results.  It's helpful to know how you're doing as you go along and to be able to monitor your own health.  So good on you for speaking up and you're probably the reason they made the change.  

I'd like to know the contents of XYZ too...but guess we'll have to wait til Christmas morning, eh?  :)

You hang in there too, my friend....will be awaiting your own results.  Glad it's going well so far.  

Take care, Emi.

Trish

[foofighter]

Just noticed you replied on the other side to an older thread of mine that got bumped up by drofi. I rarely come over to this side but I have to remember to do so as I am missing medical news such as your trial info.

I passed on participating in this trial to wait for Vertex Phase 3 but I just noticed they are still recruiting (unless it is an error) at my trial site. I have to read all your posts to see how you and the other R1626ers are doing labs wise. I think that if there is a problem for this one, it is wbc's. My problem is low platelets so maybe this trial would be an okay fit for me. I skimmed the above and it seems so far, so good for you.

I will get up to speed this afternoon and stay tuned for more info!

[StainedGlass]

I have low platelets and am into my 5th week of the r1626 trial.  My screening  + baseline platelets were below range and this didn't exclude me from the trial so that may not  be an issue for you.  My week 3 panel showed me at 75 (ref range 140 - 450),  and they do not seem to be too concerned when I asked about it.
Good luck on getting into the trial you want.
cheers
B

[Isobella]

Happy St Patricks Day!  

I hope this week finds you all well and hopefully low on the sx.  Thanks for keeping us updated on your progress-we are all pulling for ya.  

Stay strong and fight the good fight!

I hope to be right behind you in Phase 3.
Foofighter-maybe we will be able to compare notes if we both get in.

Good thoughts and lots of prayers-Izzy