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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
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A drop in HGB to 10 or thereabouts is actually good.  That is because it is a sign that the ribavirin is being absorbed sufficiently into your system to cause that level of anemia.  It is very important to have a high enough concentration of riba in your blood serum, as not enough riba can be the cause of breakthroughs or relapses.  

My hgb never fell much below 12 and I had a breakthrough.  I've read about others who have had this same pattern and relapsed.  It's not an exact science while the riba concentration is not being measured directly but still.  You can read it that the riba is being absorbed correctly and so it should be doing it's job.  That is very good news.  

dointime  

          
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Thanks for the feedback.  If I felt worse, I'd be more concerned.  It's the trial co-ordinator who I think wants my hgb up because of the no rescue drug thing and so I don't go lower and end up with a dosage reduction.  I'm okay with things as they are.  I figure there's time to stabilize yet too.  Was a little surprised at the Folic Acid thing really.. that she'd suggest that.  It's going okay .. I'm at 615 IU/ml at Week 3 so .. here's hoping for Week 4 which I get results of on April 11.  

Thanks for the encouragement, appreciated. :)

Trish

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My tx doc gave me folic acid 5mg tabs.  I was puzzled by that too, seeing as my folic acid was not low in the first place.  He just said that it ensures that the body has the building blocks to produce the red blood cells that it needs.  He said that he gives it to pregnant women too and it was really ok.  

You seem to be doing fine as you are, but maybe that suggestion would be worth revisiting if your hgb were to fall below 10.  

dointime
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420882 tn?1205387172
Wow Trish - That is a great VL drop for your wk 3!  The drum rolls till wk 4 results!
Glad to hear that your ANC drop was just an anomaly.  

Emi - Great wk 1 ... hope your wk 2 VL is just an anomaly also. I wouldn't overthink your LFT's as your numbers are so good.  Wait till you see mine...

The good news on my front is that they have lifted all my dose reductions.  Monday my study nurse called with my wk 6 results and as my ANC had risen back up to 1.1 they lifted the study drug dose reduction.  Then on friday (in time for my weekly Peg) they raised the Pegasys back up to full dosage.  Our study team has been in talks with the Roche safety board re: dose reduction protocol and the balance to give patients a fair chance at clearing the virus.  Apparently it is being overhauled but thats about all I know.  It seems that there has been some movement.

The down side for me is the effects of the dose reductions.  I had very little movement in my VL between wk 4 and wk 6. I'll list my  VL's since baseline:

Baseline - 3,020,000
Wk 1           277,000
Wk 2               8,720
Wk 3               4,070
Wk 4               1,770
Wk 6               1,410

As you see there has probably been a price with the dose reductions.

My Hemo reached its lowest at wk 4 with 10.8  and is up to 11.5 at wk 6.
While my energy levels are certainly lower,  I feel like I am doing pretty well though.  The routine of the work week is no problem in spite of the 60hr week  and I am still swimming 3 times a week.  My week ends are definately more fatigued as it seems that that is my regular SX from my peg injection

As for my LFT's, well - high but lower:
Baseline - AST 95 - ALT 152 - GGT 104
Wk 4     - AST  53 - ALT 86 - GGT 67
Wk 6     - AST 55 - ALT 74 - GGT  82
Points to my high level of liver damage and possibly how intrenched the Virus is.

Heres to some great week 4 results Emi / Trish.
And Laurie, hope you are still on the upswing and smiling with you UND :)
cheers trial buds
B
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B, that is some AWEsome news that your dose reductions have been lifted.  I am very pleased for you.  I'm sorry that it came at a cost and I am hoping AND expecting that the increase will yield noticeably improved results for you.  You are actually very close and you are at six weeks.  I'm holding out great hope for you.

Your ALT/AST actually looks not bad to me .. your numbers are coming down well it seems when I look at your Week 6 compared to your baseline and if you keep up at this rate, it will only continue.  Again, I am so *pleased* that you get to increase your dosage!!  I smiled large upon reading that news!!  It seems we are all doing well in various regards and I am happy for all of us.

I would guess...that you have the higher dosage of INF and I have the lower one.  My Week 6 injection last night and my weekends are actually not bad.  Friday evenings are much of a write-off and I sleep later on Saturday mornings than I'm used to but no significant energy hit beyond that. So I'm thinking lower dose of INF.  The encouraging thing about that, if that happens to be so ... is to get that kind of drop in my VL even at a lower dosage.  That potentially says interesting things about this triple therapy and I'll be impatient to see all the data at the end!!

If your HGB was 10.8 at Week 4 and you've gone up in later weeks, as seems to be the common experience, this is like a temporary drop in mine and I shall see how it goes.  

So next is Week 8 results, B., yes?

Emi ... you and I get Week 4 results this Friday ... here's hoping for both of us.

Laurie .. please drop in, let us know how you're making out.

And then there's Rinica.. her husband is on this trial too and I do believe he's UND now.  Will have to find out.

Hope you all have an absolutely lovely weekend..... gorgeous here and requires a walk. :)

Trish  
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Trish, you are going great and I will keep my fingers crossed for your week 4 results.  My HGB at week 3 is 150 down from 164 at baseline, so after hearing what dointime had to say about riba absorbtion, I hope I am absorbing okay.  I do ensure to take my meds with fat, such as p'butter, yoghurt, milk etc and usually take meds with meals anyway.  SG, I sense that if they had not been so conservative with your dose reduction your results would be better and most likely UND.  But hey, your in for the long haul now with good log drops.  With your tx back to full dose, I reckon UND by week 7/8, fingers crossed.  Laurie's currently on holidays in Vegas/Grand Canyon but posting on her blogg still.   I have acquired a couple of rash spots which aren't that itchy but annoying and uncomfortable.  Energy levels are okay, I walked the dog yesterday and did a brisk 3km walk, so not too bad.  Sleeping well now and really enjoying not having to do the Sydney trip this weekend.  .Anyway buddies, hope tx sx are doable for you and you remain strong, I'm always thinking of you guys, the head miles are wicked on this ****. Regards Emi
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I read that your VL is coming down but slowly, also that your HGB has not dropped by very much.  I also see that you are on 1000 riba.  Riba can take a while to reach maximum concentration.  Some people say 2 weeks and I've heard others say as much as 8 weeks.  It probably depends on the person.  

If it were me and with no trial constraints I would up the riba to 1200 right away.  I don't know if your trial doc would be allowed to do that but I would certainly ask.

Best wishes,
dointime

    
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Thanks for this information dointime, it is interesting!  I was 76kg prior to getting myself really fit pre tx and fell to 74 at screen and remain.  Had I been able to get 1.1kg of weight back on I would have been dosed at 1200.  So I could address this by puting on a kg and they would have to increase I guess.  My week 3/4 are in and a little strange??

BL 4,800,000
W1  495,000
W2 307,000
W3 495,000
W4 57,500

Week 3 is a bit strange, is this common to see a jump upwards? Anyway I'm just about at 2 log at 4 weeks so going okay.  I hope Tierry has emailed this right and will double check.  He is a Frenchman and stuggles with written English to a degree.  Lets hope I don't see this sort of jump again. I need to get my riba dose up to 1200, well that's the plan.  I'm locking in at 90PegIFN, 1000mg x 2 daily of Trial Drug and of course 1000 riba.  I think it is group F but will double check. I want more freakin PEG, a 180 shot could just about destroy this filth. Regards Emi
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Correction with the trial drug dose, meant to write 500mg x 2 daily.
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I was going to ask about your weight.  I deliberately maintained my weight at 76kg throughout in order to get 1200mg.  So start packing your face with pizzas and burgers.  In fact, some people on this forum did that pre tx because they had reason to believe that increasing the 'bad' fat in your body increased the chances for tx success.

I have seen it happen, especially in the first weeks, that VL does not go down in a straight line (talking log numbers here) but starts to level off.  That is the virus mounting a resistance to the drugs.  Your week 4 result suggests that it lost that particular fight (very good news!) but it is not a pushover.  Never mind, you are still in the game.  Get the riba up ASAP and fingers crossed that the trial drug makes the difference.  That drug looks to work slow and steady so it could be just right for the job (rather than VX950 which was very fast but rapidly lost efficacy due to resistance developing).

By the way - can you think of any reason why you might not be absorbing enough riba?  Are you throwing up?  Are you getting the runs?  Is your digestive system working normally as far as you can tell?  This is a question I asked myself but never came up with an answer.  Some people just seem to be less 'absorbent' than others.

dointime
      
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PS - when you get weighed next, keep your shoes on and wear your most heavy footwear.  Tie lead weights to your belt if you have to.  Don't worry about taking the 1200mg dose, you've miles to go before anemia becomes a consideration.

dointime
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Thanks, I had already thought of the lead weight situation and I'm going to use.  I am having riba with small amount of fat and eat and drinking well.  No digestive problems.  I am now noticing a rash in places which came on at about week 3/4, so maybe this is the riba kicking in, I hope so.  Wouldn't mine having these haemotology stats at EOT but for now it is about killing the virus, so I don't mind some drops in haemotology. Thanks dointime, your advice is valuable to me. Regards Emi
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I had the riba rash as well.  I don't think it says much about the riba concentration in your blood serum.  Only your hgb will give you a rough guide to that.

By the way, that rash can get to be a nightmare.  You probably should ask your doc for some steroid cream/lotion to control it before it gets to be a real problem, especially as you are upping the riba.

You are welcome to what little knowledge I picked up on my way here.  Doing a trial is quite a unique and testing experience.  Others on this forum helped me a lot when I was where you are now.

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408795 tn?1324939275
Glad I finally ran into this post and I'm glad you're doing well!  I've must have come across it a couple of times before I'm sure, finally I looked in.  It's so stange cause I was wondering about you.  God Bless
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Thanks fret, I appreciate your thought, it means alot.  Oddly enough I just sent you a message too.  You should have it now.

Trish
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Emi, that's a really good drop between Week 3 and Week 4.  I'm really pleased for you.  Even with your "bloods" showing minimal impact, look where your VL is at.  This is good.  Keep in mind you still have time.  I'm very hopeful for you, Emi, after seeing that Week 4 result.  Keep it up .. I hope you get the riba increase you want .. don't worry about the INF... "accept the things we cannot change", that sort of thing.  You have other weapons in the arsenal and just hang in there.  I'm going to hang in there a couple weeks more to see if I start getting any sides after the INF shots.. so far not so much .. before I shoot a prediction out there. :)

I get Week 4 results on Thursday morning.  Was supposed to be Friday and they called to change my appt to 7:30am on Thursday.  Means I'm up and out the door just that much earlier .. around 5:45am.  Argh.  But also means I miss less work this way too.  

Will let you know how Week 4 shakes out when I have the info.

Take care, Emi.

Trish
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Well, no UND and therefore no RVR.  It did look promising there for a bit, didn't it.  I went from 615 in Week three to 448 in Week 4.  Must be the Scottish ones that are left, they'd be the most stubborn ones.  So .. guess I'm duking it out one-on-one with the remaining virons til I slay the little buggers.  

HGB is either 10.3 or 10.8.  Gawd.  Doc says 10.3 in American units whatever that means and Trial Co-ord tells me 10.8.  So .. ??  ANC is holding nicely in the 2.** range so no issues there.

I actually got to have a conversation with a doctor today, what a novelty.  So back to the Folic Acid discussion.  He tells me to take Folic Acid and I say "well, I did some research and it seems to say that Folic Acid doesn't make a difference in ribavirin-induced anemia" and he says "generally it doesn't but in 10 - 15% of the cases it CAN make a difference and since you don't want a dosage reduction, then ... Folic Acid can't hurt.. might help."

I was pretty satisfied with his response so in light of THAT,  "can't hurt, might help" works for me in this case. I have no worries about B12 deficiency so no worries about Folic Acid masking it.  And I'll take peanut butter cups too just because I like 'em.

Starting to feel nauseous after I eat and just vaguely all the time but nothing serious.  Getting used to the randomness of the fatigue finally, I think.  Still working, still studying, still keeping on with the activities of daily life.  And crashing as necessary.

Hope you're all doing well.

Hoping you get your riba uptake, Emi ... because you want it.

Regards,

Trish
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Trish, just stay the course.  Sometimes the response seems to flatten out and people still can go on to clear.  I would look at your viral load more as a hestiation or stall than as a rebound.  The difference between the 2 weeks is slight; almost negligible.  Next weeks viral load may be more telling but I think that it could go down as easily as it could go up.  Hang in there and keep doing everything to the best of your ability.  

I know that you are busy but don't forget to also rest.

Hang in there,

Willy
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Thank you for the encouragement, Willy.  I haven't gone running since the 9K the first weekend I started treatment.  I am pretty much forced to rest, like most people, because when the fatigue hits it really hits.  And then I rest.  When I have a good day I make the most of my energy.  I'm not really doing exercise other than walking and keeping on the move for work and life.  It actually keeps me mentally positive I think and that's a good thing.  

No worries, Willy.  Definitely staying the course and the little buggers are doing down.

Take care and thank you for your thoughts.

Trish
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I was also flat (and detectible)  between weeks 3 and 4, but did clear at week 6 and went on to SVR. Also read similar here. Not a lot of published data on weekly viral load testing, so hopefully it's just part of the UND process.

-- Jim
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I know RVR isn't everything.  I just would have liked it.  Moving on.  Thanks Jim.

Trish
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Thanks Elaine...hugs from you always make me feel better. :)   I kind of wanted those increased odds that an RVR brings you but if I'm SVR in the end, the fact that I didn't RVR isn't going to matter at that point at all.

Thanks for your thoughts, appreciated.  Hope you and Nick are having good days.

Regards,

Trish
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Well back from Sydney after a 4.30am start this morning and shot 7 in.  Had the professor alter my riba to 1200mg but he then spoke with sponsor and was advised that the protocol for dose increase is based on a percentage of weight gained rather than going from 74 to 75kg.  He phoned me on my way home with the bad news - so no increase: Week 4 CBC - ALT 21  (LFT's seem to have stabilized around 20's)
WBC 5.3
HGB 150
RBC 4.6
Plate 185
Neuts 65.9
ANC 3.49
VL 57,500

Bloods remaining really solid.  Prof said that this is a really good thing and considering that I am getting 1log drop every 2 weeks.  Anyway that's 64 hours travel time since screen.  Cant wait for monthly visits.  Anyway I got to have 1200mg of riba today and I got an extra 5 points? of PegIFN out of the vial (some have a little extra). Trish it must be frustrating to have so little to clear and it's hanging around.  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. Stay strong.  Regards Emi
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"Not a lot of published data on weekly viral load testing, so hopefully it's just part of the UND process."

That's a good point you make Jim.  I remember when the VL results came out for the Vertex people and we puzzled over why some alternated for a while between UND and very low numbers, and what that might imply for SVR.  That may indeed turn out to be fairly normal for the UND process.

dointime      
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"was advised that the protocol for dose increase is based on a percentage of weight gained rather than going from 74 to 75kg."

Well, I never heard of that protocol and it is not what was used either in my trial or by my local doctor.  I would really challenge this.  Is it specific to your trial or is it an interpretation of the weight-based dosage rules for ribavirin?  I think some research is in order.  This soooo sounds like a mistake to me.  

Anybody - is this how weight-based riba is supposed to be dosed?

dointime        
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I was advised it is the protocol to this particular trial.  I will investigate this further and as I said previously it was a phone call while I was on the road.  The prof didn't have a problem with the increase until he spoke with the sponsor or so he said.  I have read the protocol document completely and can't find any reference to it.  So they (sponsor) could be just making a discretionary decision. Not sure.  I'm starting to feel a little used throughout this process, trials are so cold. Anyway I just want their drugs.  Regards Emi
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"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

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Well correct that... 615 - 448 = a drop of 167.  Math is a little off.  
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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
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>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..
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420882 tn?1205387172
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
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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
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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

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406107 tn?1219016200
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
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420882 tn?1205387172
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
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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

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420882 tn?1205387172
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
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420882 tn?1205387172
My wk 12 is scheduled for May 8th... tic toc, tic toc,
Now watch the coffee scramble fingers. :)
cheers
B
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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
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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
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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
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"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
                  
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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      
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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
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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
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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    

        
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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.

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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

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You do realize that "week 6" is the magical week to become UND. At least it was for me. Congratulations!

-- Jim
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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
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