Aa
Week 2 VR - good news and bad
Got my 2nd VR and got another log drop! One per week!
baseline 3,020,000
week 1 - 277,000
week 2 - 8,720
My bad news is that the R1626 Trial masters have saddled me with a 25% dose reduction on my Pegasys! Sort of brought me down a bit as I am just going into week 4 and want to keep things optimized to attain a 4wk RVR. A bit disconcerting.
Neutrophils have dropped a bit but as my study nurse explained, the Trial tends to be conservative with monitoring / dose reductions - especially with Neutrophils and R1626.
Neutrophils: ref range 40.9 - 77.0 %
week 1 - 42.9
week 2 - 37.8
Neutorphils, ABS: ref range 2.03 - 8.36 x10E9/L
week 1 - 2.02
week 2 - 1.25
WBC,HEMO,HEMOCRIT,+ RBC have all dropped slightly to just at the cusp of their respective low ref range.
The Question? What can I do to elevate Neut's. I am still trying to put together in my mind all the different factors that is the cats cradle of this treatment and I would like to keep things optimized as much as is in my hands to get an eventual SVR. I know being in a Trial takes some of it out of my hands but I knew that going in.
What is so counter intuitive is that through my TX so far I have been feeling relatively good. I have been able to keep up my usual swimming regime and the biggest SX's so far has been night sweats and a moderate Sunday fatigue - 2 days after my peg injection. The treatment can be as insidious as the Virus?
Sorry if this is more appropriate to the HepC forum.
cheers
B
baseline 3,020,000
week 1 - 277,000
week 2 - 8,720
My bad news is that the R1626 Trial masters have saddled me with a 25% dose reduction on my Pegasys! Sort of brought me down a bit as I am just going into week 4 and want to keep things optimized to attain a 4wk RVR. A bit disconcerting.
Neutrophils have dropped a bit but as my study nurse explained, the Trial tends to be conservative with monitoring / dose reductions - especially with Neutrophils and R1626.
Neutrophils: ref range 40.9 - 77.0 %
week 1 - 42.9
week 2 - 37.8
Neutorphils, ABS: ref range 2.03 - 8.36 x10E9/L
week 1 - 2.02
week 2 - 1.25
WBC,HEMO,HEMOCRIT,+ RBC have all dropped slightly to just at the cusp of their respective low ref range.
The Question? What can I do to elevate Neut's. I am still trying to put together in my mind all the different factors that is the cats cradle of this treatment and I would like to keep things optimized as much as is in my hands to get an eventual SVR. I know being in a Trial takes some of it out of my hands but I knew that going in.
What is so counter intuitive is that through my TX so far I have been feeling relatively good. I have been able to keep up my usual swimming regime and the biggest SX's so far has been night sweats and a moderate Sunday fatigue - 2 days after my peg injection. The treatment can be as insidious as the Virus?
Sorry if this is more appropriate to the HepC forum.
cheers
B
Another US based trial paricipant that I know of has cleared at week 2. I have found this out from a friend who visits my home site. Baseline 4,000,000+, Week 1 350, Week 2 UND, amazing drops. Unfortunately her WBC, neutrofils and platelets have crashed and they have taken her off the PEG and given her rescue drugs. The study people sent her Neupogen to bring up her WBC, which worked pretty fast, and Procrit for the Hgb, which didn't work that well, so yesterday she had to have 2 units of blood transfused. Will start back on PEG today. Can you believe this tx management and so different to yours SG. What the hell is taking someone off PEG for 2 weeks going to achieve. This has really pissed me off, I just can't believe it. Anyway I'm assuming she is on big dose of everything with those drops 'freakin nuclear bomb man'. A PEG reduction should have been the order, what do others think? And maybe a reduction of trial drug (clincial teams can get tx arm information in these circumstances). Roche obviously doen't want to vary any trial drug doses and I don't know why not, isn't Phase II about getting dosing right. Starting to feel like a lab rat people. regards Emi
Canada sounds fantastic to me, what a beautiful country and the best health promoters in the world. I'd like to put in a speculator now but won't lock in just yet. I think I'm in d, e, or f (90mg Peg IFN) and also not the top dose of trial drug and I forget which one is the highest group for that, so 1000 or 2000mg daily. This is only being due to how well I am tollerating the tx to date and that the fact that my neuts and WBC remain solid. Not much to go on I guess, so week 8 sounds good to lock in. regards Emi
I would be surprised if your doc knows what arm you're in, simply because this trial is double blind. Neither the researchers nor us are to know what arm we are in, to my understanding of that.
A wager...never could say no to those! I think the odds of Emi coming to Canada have just increased...lol :) I say at Week X results, we decide what arm we think we're in. You're almost there, B. What do you say? Pick a week to shoot for .. Week 8? Maybe we could start, like, a hockey pool on it.. ;->
A wager...never could say no to those! I think the odds of Emi coming to Canada have just increased...lol :) I say at Week X results, we decide what arm we think we're in. You're almost there, B. What do you say? Pick a week to shoot for .. Week 8? Maybe we could start, like, a hockey pool on it.. ;->
"if you are the sensitive type. "
LOL yeah... I am a bit sensitive - but I think the riba will take care of that ;-)
Thanks for the encouragement. There are so many variables in all of this I guess we just jump on and see where we get spit out at the end.
cheers
B
LOL yeah... I am a bit sensitive - but I think the riba will take care of that ;-)
Thanks for the encouragement. There are so many variables in all of this I guess we just jump on and see where we get spit out at the end.
cheers
B
I also had an increase between screening and baseline VL readings. Was told this is very typical and as Trish said ... its what happens from here.
Emi - It is great to here you are doing well and your WBC is holding steady so far.
My study nurse claims she is not informed of what arm of the trial I am in - not sure about the Doc. He is the principal investigator for our region of the trial and head of dept. at the University so I would guess he might but I am sure he will not tell me. Cosmetically, it almost sounds like you are in a different trial. Having to lobby to get your VL results sounds crazy. Here I have been having my blood draw on thursdays and usually get a phone call monday or sometimes tuesday with my VL results and discussion of my panel + chem and then pick them up on the next thurs. I have been actually surprised by the level of personal care.
Initially I took the dose reduction as a bit of a hit but when I stop and think of it, I was never thinking of a RVR in terms of getting out of this at 24wks. It is more that the success rate of clearing this seems much higher when there is a RVR. In my mind it has always been the longhaul. Thanks to Trish's query at her study, I will start to lobby for an increase of my Pegasys but 1st I await my wk 4 results!
Yeah a little wager on which arm of the trial we are in - do we ever find out for sure? Boy a trip to Australia next winter would be nice ;-)
cheers,
B
Emi - It is great to here you are doing well and your WBC is holding steady so far.
My study nurse claims she is not informed of what arm of the trial I am in - not sure about the Doc. He is the principal investigator for our region of the trial and head of dept. at the University so I would guess he might but I am sure he will not tell me. Cosmetically, it almost sounds like you are in a different trial. Having to lobby to get your VL results sounds crazy. Here I have been having my blood draw on thursdays and usually get a phone call monday or sometimes tuesday with my VL results and discussion of my panel + chem and then pick them up on the next thurs. I have been actually surprised by the level of personal care.
Initially I took the dose reduction as a bit of a hit but when I stop and think of it, I was never thinking of a RVR in terms of getting out of this at 24wks. It is more that the success rate of clearing this seems much higher when there is a RVR. In my mind it has always been the longhaul. Thanks to Trish's query at her study, I will start to lobby for an increase of my Pegasys but 1st I await my wk 4 results!
Yeah a little wager on which arm of the trial we are in - do we ever find out for sure? Boy a trip to Australia next winter would be nice ;-)
cheers,
B
Emi: Interestingly I went from a screen VL of 3,900,000 to baseline 4,800,000 not sure what that is about? All I can put it down to is the biopsy in between the two?
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Both the docs I had told me VL doesn't fluctuate but I keep reading on these boards from many people who have fluctuating VL's. My VL went the other way.. screening was 2,100,000 and baseline is 1,650,000. I'd be surprised if the biopsy had any impact on VL. At this point .. I wouldn't worry about it .. not like you can do anything about it and now you are virus-killing!
Thanks for the encouragement on the drop ... I suppose it's simply that the three others I know of had a more significant drop than that but someone's gotta be lowest and it's still a good drop for Week 1. All those who know better than me tells me that's good so I'll go with that.
What does it mean to group Bloods 1 and 2?
Nice to hear from you, Emi. Take care.
Trish
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Both the docs I had told me VL doesn't fluctuate but I keep reading on these boards from many people who have fluctuating VL's. My VL went the other way.. screening was 2,100,000 and baseline is 1,650,000. I'd be surprised if the biopsy had any impact on VL. At this point .. I wouldn't worry about it .. not like you can do anything about it and now you are virus-killing!
Thanks for the encouragement on the drop ... I suppose it's simply that the three others I know of had a more significant drop than that but someone's gotta be lowest and it's still a good drop for Week 1. All those who know better than me tells me that's good so I'll go with that.
What does it mean to group Bloods 1 and 2?
Nice to hear from you, Emi. Take care.
Trish
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