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420882 tn?1205383572

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

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Avatar universal
Hi

Correction on my baseline it's actually 4,480,000 not 4,800,000.  I would be pleased with 1 log drop at this stage. Need an editing tool on this site. Regards  Emi
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Avatar universal
It might encourage you to know that there was a guy on my trial who got dose reductions on interferon and riba and he was still one of the few who went on to SVR.  His rational was that his body was very reactive to all meds and he would get blasted on a fraction of the dose that anybody else needed.  He had a bad time with both his WBC and RBC dropping and felt bad throughout his tx but he made it.  Whereas my bloods didn't drop much on double the dose he was getting, I didn't feel half as bad as he did but I failed tx.  So things can turn out in unexpected ways and you shouldn't lose heart about these dose reductions.

If you are like him then the shitakes really could help.  They might work doubly well on you if you are the sensitive type.    

dointime        
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Avatar universal
When I had the suppliment discussion with the trial coordinator she said I definately can't take milk thistle which I had been in the lead up to tx and that vitamin C and flaxseed oil were okay.  I'm taking occasional vitamin C but unsure about the flaxseed? I take this becasue I react to fish oil, but want the omegas. Any advice would be much appreciated. REgards Emi
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Avatar universal
Hi Everyone

Pretty encouraging reults SG and Trish, I hoping for a decent drop and the waiting is doing my head in.  Apparently Roche have asked our site to group our bloods week 1 and 2 to better deal with the extra load this trial is creating.  Well that's what I was told anyway?  Trish you seemed a little disappointed with your result, but do remember the R1626 shows absolute resistance and good drops should continue. My other results are encouraging reduced lft's and WBC/Neutrofils steady.  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?  We will have to have a little wager on identification of what groups we're in? I've already got my owns suspicions.  SG I;m sorry to hear about your reductions, however the reductions gives me a sense that you were on the top peg dose and reasonable PI, does the trial team know what group you're in?  Anyway mate you're in for the long haul with a 3 log drop and once bloods are sorted you could always increase dose. Take care co-pilots. Emi
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420882 tn?1205383572
We have a large asian community and fresh shitakes are available most everywhere.  We do use them on occasion but not recently.  Thanks for the tip.  As I started with a fairly low WBC at baseline,  I need all the help I can get and would like to avoid more dose reductions bettering my chances to beat this.
thanks
B
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Avatar universal
Susan, I can see I'm being a bit anal about this...lol..a number of things could impact, couldn't they.  If it was all THAT important, they'd give us a complete diet plan and ask us to write down what we ate every day, wouldn't they!!

Trish
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