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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

46 Responses
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Avatar universal
If you artificially inflate or deflate the results with other things, organic or not ...  that skews the data, does it not?  If you're not on a trial .. then it all goes.  But on a trial, that's why limited rescue drugs, etc .. to keep the data pure .. yes?

That is just a food for thought thing .... and not about to tell anyone what to do on that.  What a person decides for their health is their own choice.

Helpful - 0
250084 tn?1303307435
So glad I saw this!  Forgot I can start taking all my stuff again!! I take a liquid of mushrooms (several kinds) and a vitamin mixture, also liquid, that I get at health food store. And wheatgrass and all that stuff! I can start all that again!!

Thanks!

LL
Helpful - 0
Avatar universal
My study nurse when I was in Prove 3, did some research on this since my Neut.'s were dropping and came up with eating Schitake (Sp.??)  Mushrooms.    They are supposed to be good for increasing your white cells.  I bought some right away and started eating them in everything I could think of, soups, stir-fry's, salad's, etc.  I was told to wash them well first.  Anyhow, my white cells stabilized at first and then, actually increased by a couple of points.  It certainly wouldn't hurt to try it.

Susan
Helpful - 0
250084 tn?1303307435
How cool your in the same trial and can compare, push each other along!
Not too sure on the reducing you in all this, just sending cheer on words and glad your both doing well so far.
Stained...3 log drop is good! Have to read Trish's labs.

Keep it up you two :) RVR and/or SVR to you both.

P.S. I WANT some snow :(

LL...in sunny Fl!

Helpful - 0
Avatar universal
B., I asked the study nurse what the protocol says about dose reduction of Peg or Ribavirin.  She said there is no protocol on those ... it's symptom driven and at the discretion of the doctor.  The study drug may be another matter, which is what they're reducing on your 2nd reduction.  So... perhaps there is room to negotiate on reduction of the SOC drugs?  

My VL appears to have dropped far less than the others I've read so far, B.  I've posted my results and you can check them if you want.  I don't really understand them that well, she seems to be using different measurements than you have so I'll have to sort that out so that I understand this better ongoing.  I have a chart to fill out for each week with all my results now... so if I can learn to interpret them better it will be very useful.

Hope you are doing well.

Trish
Helpful - 0
Avatar universal
Since it is now just after midnight....I get my first week results today!!!  I will ask about the protocol for dosage changes and what warrants it and see what information I get.  

Hang in there, B.  It's not the end of the world if you don't make RVR.  It's not the only indicator of SVR.  You have already met the 12 week requirement of the 2 log drop so treatment IS working for you and at 3 weeks already.  You don't have to sweat that part out to your 12 week mark.  I wish for RVR for you ... but really....the main goal is SVR.  And I wish that for you more.

Trish

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