hello

[pln]

Hi, I got the results of 4th week blood, hbg 9.4, alt 27 went up a little, all in all I feel pretty good, took shot 5 monday, then drove to the outer banks in NC, we have been riding the storm out the past 24 hours, alot of flooding, I rode up to the dare county libray to get on line, I was jonesin for this site! well,hope everyone has a good day! .PLN

[FlGuy]

It sounds like pln and prettydam are getting hgb challenged. How 'bout Mr. E?  With little info out there, I wonder if VX is hgb-depleting like riba is, or if it's associated with riba only?  Hmmmm, I wonder if ther is a clue there.  Pln, if you see a window screen flying by you in NC, it's probably mine.  Did you do anything about an off-campus pcr?

[tonybuck]

Riding the storm out kinda like this treatment you do what ever you can to keep your head above water or in are case just keep drinking the water by the bucket loads. Have a good one and hang in their.

[doglover28]

Are you from NC?  I am in the RTP area.  We got spared from the storm.  A few limbs fell from the tree, but that was about it.
Pam

[couldn't think of a nickname]

Since in all of the other trials there was no riba given, and no incidence of decrease in hgb, I would say it is riba only. Also, the only thing 950 targets is a specific protein on the virus.

[prettydamscared]

Pln, it's good to finally talk to you.  I've been wondering how you were doing.  Hope the storm passes soon and you weather it ok.  

You probably don't have your blood work with you but do you kinda remember how quickly your levels dropped.  mremeet told me your meds were reduced...do you know about where your levels were when they were reduced.  What were your symptoms like that caused them to dose reduce?

Sounds like you're a week ahead of me.  I did shot #4 on Monday night and since then, I've felt really bad, no energy, flu like but only at night, lightheaded, yada yada.  I wish I knew what to attribute it too, the peg or riba.  Got results from week 3 yesterday.  I've dropped from 13.9 to 11.9 in 3 weeks which doesn't seem that rapid.  But, I didn't start to feel bad until Tuesday of this week so maybe hg has fallen rapidly since Monday.  

mremeet started at 16.9 and by day 4, he was at 16.1.  I haven't heard since.  Now, I'm kinda confused.  pln, do you remember when he started.  I was thinking it was 8/18 and i ran into him on his day 4 which was 8/21 but that's gotta be wrong because we were emailing over the weekend and he didn't have his one week results by then.  Damn, is this what they mean by brain fog.  I can't believe that I don't know this.  

Flguy, you had similar symptoms to mine, right, and you knew it wasn't the riba because didn't need Procrit. I'm just really concerned about dose reduction because I may not be getting the vertex.  pln, it seems like you probably are because of your drastic reductions in ALT. I just checked mremeet's email to me.  It sounds like you started at 118, day 4 you were in low 90's and by week 2, you were at 26.  According to mremeet, that's a hallmark of vertex950.  (I read a bunch of vertex950 studies yesterday but don't remember finding the one that refers to the drastic decline in ALT levels so, at this point, I'm quoting mremeet on that)  Mine started at 84, day 4- 61, week 1 - 40, week 2 - 43 and week 3 - 45.  That kinda concerns me.  I would have hoped at week 2 to see continued decline if I were on vertex.  Hope you don't mind me quoting your stats...i don't mean to seem like a stalker here. lol

FLguy, yet another question for you.  In another thread you posted, you'll be looking for neupogen at 500.  Do you mind explaining once again what you're referring to there.  I can't find anything in my blood work that looks like it would correlate to 500.  Something to do with wbc count, right?

Of course, I knew going into this study that we're blinded until week 12 or 20, as the case may be, but I just hate to get dose reduced if I'm not really getting the vertex because it so signficiantly decreases chances of svr.  I guess i was hoping that my hg levels would hold steady through week 12 and maybe they will.

Sorry for the extremely long post and all the questions.  mremeet seems to be out of pocket right now so I'm throwing all the questions at you.

Thanks, Char

[FlGuy]

That makes sense. Still very curious about the fate of those 12.  Do you think they will publish data at large when available or save the release for Medical/Liver conference or publication?

[FlGuy]

The 500 was in reference to the absolute neutrophil count which is a component of the WBC - the infection fighters.  I'm sure there is a more techinal explanation. But, white cells have several compnents, one is neutrophils.  In the consult I had the liverhead was expressing various levels at which my tx doc should take action.  In this case the ANC's should be treated (with Neupogen or Neulasta) when the ANC dip to 500.  In prior tx the hemotologist took action at 1000 - which is comparatively early.

One interesting thing that i learned as I charted my blood work was that when the anc's went down and the doc administered Neupogen the following weekly cbc showed an expected increase in wbc and anc's hgb.  The rise in hgb might have been just a coincidence though.  ANC was not a discreet entry listed on the cbc, it's a calculation.  They did it by taking the wbc and multiplying by the segmented neutrophil percentage and moving the decimal point a couple of places.

[prettydamscared]

What am i missing here?  mremeet talked about that study as well, the one with no riba and peg.  I'm looking at a press release dated 5/21/06.

Los Angeles, CA, May 21, 2006

[prettydamscared]

Thanks for that explanation.  I don't suppose you know what ANC stands for, do you.  I'm going to have to resign myelf to the fact that I'm not gonna learn all this overnight.  I have 2 entries on all weekly study blood work for neutrophil levels.  Right now, they're at 2.61 and 69.7, both within normal range.  I guess it's all reported slightly differently with each lab.

Thanks again for your help.  Char

[FlGuy]

'absolute neutrophil count'.  On my cbc I use 2 numbers. one is 'WBC', the other is 'GR' which I think stands for granuocyte (or something like that).  They are multiplied to arrive at anc.  If you google 'absolute neutrophil count' you can get a better explanation. Or if you go the Janis site and look under 'understanding your labs' there's an explanation there too.

[prettydamscared]

Duh, of course it stands for absolute neutrophil count.  I'll check out Janis's site.

Thanks, Char

[friole]

The two numbers that are given for your neutrophils are the percent of the total white blood count -- and that would be the 69 number. (if you add the neutrophils, lymphs, monocycles, eos, and basos together it equals 100%)  The other number 2.61 is your absolute neutrophils, expressed in K (1000's)/uL.  So, the other way to read the absolute neutrophils is 2,610.  Those numbers are great by the way. On my CBC, absolute neutrophils are shown as NE#.  ANC is absolute neutrophil count -- same as NE#.

[prettydamscared]

Thank you very much.  I'm starting to get it now.  Wow, there's really a lot to all this.

I very much appreciate your reply.  Charlotte

[friole]

No kidding, Charlotte -- a lot to absorb.  And I am not sure how long I retain stuff.  I have boxes and boxes of "C" stuff I downloaded over the last year but haven't read yet.  Get on top of all you can now -- you are at the point that the blood counts can start dropping pretty rapidly. I did not start Neupogen until week 15 (altho the doc wanted me to start way before) and procrit at week 17 -- but it seems once the blood counts start dropping they don't stop so you take the rescue drugs throughout treatment. One thing I found was that by about week 24 - maybe 30 and for quite awhile after that I just couldn't read long studies and papers -- heck - I couldn't even read long posts -- ha ha.  

You are doing well, it sounds like.
kathy

[couldn't think of a nickname]

Fla,
I don't think we will know anytime soon simply for the fact that those 12 are still on SOC. The plan was, tx them for 28 days, and give them the option to roll over to SOC for a total of 1 year. I believe they all opted for the rollover.
If anyone is wondering, that won't count towards SVR data or anything.
If they started dosing in December of last year, I would imagine they will be on SOC until Dec. of this year.

[couldn't think of a nickname]

Yes, I inadverantly posted that none of their other studies used riba before. That one did. The other two phase 1b's (and of course the healthy volunteer study, 1a) did not have any riba in them.
They have actually dosed more without riba than with riba up until this current study.

[couldn't think of a nickname]

Sorry, got my p's mixed up!

[prettydamscared]

Thanks for clarifying.  I need to do a little more reading.  Everytime someone refers to the study with 12 participants lasting 28 days, I always seem to come back to this one.  Haven't yet found the others.  Will go look right now.

Thanks, Char

[prettydamscared]

I think I'm discovering that phenomenon now just 4 weeks in.  I'm kinda serious about that...I seem to just not catch on...it's like my iq has dropped 10 or 20 points.

I sure hope I can hold out without rescue drugs for at least the first 12 weeks cuz they won't allow them on the study until after that time period.  Crossing my fingers here....

Thanks, Char