Aa
Aa
A
A
A
Close
Avatar universal

1 week R1626 results - help with interpreting pls

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
93 Responses
Sort by: Helpful Oldest Newest
Avatar universal
That is wonderful news congratulations. UND at 6 weeks sound pretty bloody good to me.  SG I'm hoping you get over the line next time. And for me will I just hope I get a drop and not a rise. Thanks for your kind words Trish you're the best. Regards Emi
Helpful - 0
Avatar universal
You do realize that "week 6" is the magical week to become UND. At least it was for me. Congratulations!

-- Jim
Helpful - 0
Avatar universal
Okay..every time I try and say this I get emotional.  So here it is.

UND at Week 6 to a sensitivity of <15.  

Sh*t .. all kinds of things I want to say but all I can do is well up with tears.  You can tell when something is emotionally overwhelming because I'm at a loss for words, a rare occurrence for me...even though I bet that comes as a TOTAL surprise.  Ahem. :)

Emi .... StainedGlass /B. ... a girl couldn't ask for two better trial buddies.  I'm with you all the way to SVR all around.

My hats off and humble thanks to all the great people on this forum....could not get through this nearly as well without all of you.

Regards,

Trish

Helpful - 0
Avatar universal
Very disappointing result indeed, although there is still some hope.

I agree with the others.  Hang in for the 12 week test and see how you go then.  It's only another month.  If you get the 2 log drop and can continue on, it just might work for you.

I wish you could convince them to give you the extra riba though.  That would help.

All the best, Emi.

Helpful - 0
Avatar universal
I understand what you are saying about the medicare system.  I am in UK where much the same constraints apply.

I believe that you need to get a 2-log VL drop at week 12 to pass the trial at that point?  If my figures are correct then your base line VL was log 6.68 and your 6 week VL is 5.32, ie. not yet a 2-log drop.  If you are not clear at week 12 but do get a 2-log drop on the current regime then it is hard to say whether you would be better off to continue or switch to SOC.  I guess the trial does not really give you that choice though, so that makes it difficult.  If I switched to SOC I'd go overweight on the riba and find a doc who would also prescribe Alinia, if that is possible where you are,

I've been through this whole thing and I know how agonizing it can be, so I sympathize.  All the best,

dointime    

        
Helpful - 0
Avatar universal
Emi .. I would hang in there until that 12 week mark.  Let the drugs do battle til then.  Studies have been done on the significance of results at 4 weeks and at 12 weeks but not at 8 weeks, as you pointed out to me yourself in an earlier post. :)  That is a normal SOC milestone AND a Roche milestone in this trial so you hit both of them that way, also with regards to qualifying for SOC drugs as you mentioned.  I have the same situation in my own country.  I totally understand you riding a rollercoaster along with the rollercoaster that is your results.  Just hang in there, my trial buddy.  

Regards,

Trish
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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      
Helpful - 0
Avatar universal
"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
                  
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
420882 tn?1205383572
My wk 12 is scheduled for May 8th... tic toc, tic toc,
Now watch the coffee scramble fingers. :)
cheers
B
Helpful - 0
420882 tn?1205383572
I see you have ventured up to our neck of the woods...  Vancouver can be very beautiful at times.  Except for the freak snow we had last weekend!  Aside from that, spring is well entrenched and there are blossoms everywhere.

The smiley is from the graphic novel "Watchmen" of the '80's - coming to a theater near you...

thanks for your happy thoughts
B
Helpful - 0
Avatar universal
B.,   I love a challenge!  I think I'll look for that regardless just cause you said it was hard to find...lol  :)

Ooooohhhhhh!!  A wombat doll.. that's even adorable just to SAY that!!!  (wombat, wombat, wombat .... )

I'll post my stakes when I post my prediction.  And yeah, B. .. you can have Arm  B / C.  Same meds, just different duration....seems fair.  Okay by you, Emi?

(Okay.. I've really cut back on caffeine the last month and tonight I've been drinking coffee to help me get my studying time in and here I am at 1am, wide awake, fingers flying and no signs of falling asleep any time soon.  Argh!!!! )  

Good to know your bloods have stabilized .. low but stable is good .. you can adapt around that more easily.  

When is Week 12, B. ?  Four weeks from when?

Always nice to see your smiley, B. .. kinda lights up the place. :)

Regards,

Trish

Helpful - 0
420882 tn?1205383572
Ok - I'll lay down my prediction... I'll have to say trial group B / C.  Is that in the rules?  Since they have the same dosage except for the 24 week follow through. OK,ok,ok...  Group B.  There we have it.  
Now Emi - I expect nothing less than a silver plated jar of Vegemite. Or maby a wombat doll.
And Trish - now lets see... a beer coaster from the old El Mocambo?  Could be hard to find.

My bloods have been Ok, generally low accross the board but nothing causing alarms.  Which is good.  Since they have relaxed their dose reduction protocol, and my wk 8 readings weren't too bad, we agreed to not test for wk 9 and unless I feel bad, we will wait till the scheduled wk 12 tests.  A nice break as I have been having weekly visits since before baseline.
So I am on the long wait till my big wk 12 VL.  
Here's looking to your wk 6's.
cheers
B
Helpful - 0
406107 tn?1219012600
I've just read my way through 80 comments (gaining info. bit by bit). Appreciating all of your , plural, posts and trying to wrap my head around all the technical data.  Sincerely!

I must be tired, cause I almost scratched a hole in my monitor, trying to get the sleepers out of your happy faces eye. LOL

Sorry, I just couldn't help myself.  Laughter= Medicine?

Trish,  Fall in Vancouver is a GALA of color: Maples, Birches; Reds, Yellows and oranges that are so brilliant they scream at you,(beautifully), as you drive by!!!!

Hugs to all y'all, Ant B
Helpful - 0
Avatar universal
Okay.  B., you've had Week 8 results.

Lay your prediction on the line.  What arm do you think you're in?

Emi and I have a ways to go yet.  We won't get Week 8 for another month.

So... stakes.  I got thinking about that and as much as I'd like to fly Emi here to Canada .. well, maybe I can fly a little of Canada to Emi.

Sooo.....here's what I'm suggesting.  There's a big difference between Vancouver, B.C., Australia and "near Toronto" where I'm at in Ontario.  So I'm suggesting that the loser(s) send the winner(s) something very reflective and unique about where they live.  Can be any size, I don't want this to be a financial hardship, just alot of fun out of our circumstances.  Emi, count on something maple in the mix...lol  :)  Do you have maple trees in B.C., B.  ?  I know that's a bad question.. but I dunno.  Quebec, yes.. but B.C.?

Let me know what you guys think .... and waiting on your prediction, B.  :)

(Laurie, if you're still around and you want in .. jump in! :)

Regards,

Trish

Helpful - 0
Avatar universal
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
Helpful - 0
420882 tn?1205383572
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
Helpful - 0
Avatar universal
>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..
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
Well correct that... 615 - 448 = a drop of 167.  Math is a little off.  
Helpful - 0
Avatar universal
"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

Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis Social Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.