How does this VL drop look to you?

[Trinity4]

VL back in 10/07 was 1,290,000.  Before starting tx on 3/28 I went for a baseline.  The lab screwed it up and did a QUAL instead of a QUAN so the only info was above 750,000.  So I was retested on 5/8.  I'd taken six shots in all when retested.  Just got the VL count back today and it's at 100,000.  I know I don't have a true baseline to compare to but it's been about six months months from the original VL.  Is the drop looking OK if based on the original 1,290,000.  And just to keep you up to date my ANC tanked to 600 so that's why doc reduced peg to 135.  He said he wouldn't have reduced it just based on my platelet count of 88.  I've contacted Amgen to see if I can receive Neupogen (which I'm probably going to need soon) through their assistance program.  Oh, the trials and tribulations!!!
Honestly, let me know what you think about the VL drop.
Trinity

[jmjm530]

I was able to see more than one world-class hepatologist mid treatment within 2-3 weeks. At least for me, it was a matter of getting past the secretary and explaining to someone who understands the drill -- nurse, office manager, doctor -- that time was of the essence since immediate treatment decisions depended on the doctor's opinion. Hopefully, getting back to full-dose after only one week at 135 will not cause any problems. Personally, I wouldn't continue treating with any doctor who goes solely by what Roche states in a handout.

-- Jim

[Trinity4]

Jim
Peg was reduced on my last shot (8th).  My ANC jumped up to 700 according to CBC I had today so he didn't specifically mention doing the 135 again this Friday nor did he say resume full dosage so probably will go full dose Friday.  His exact words were "I lowered your dosage because Roche states ANC levels below 750 constitute dosage reduction.  He's totally by the book.  My experience with this doc and his office staff has been like an episode of the Keystone Cops.  I know I need to change docs and I'm going to but I feel like I'm at a crossroads right now.  This doc errs on the side of caution in my opinion.  It would take me at least 2 months to see a hepatologist and that would be 400 miles round trip.  I've dropped 1 log in 6 wks so in theory I should be down 2 by 12 wks.  I may have to ride it out with this guy until then to see exactly where I'm going in the tx process.  Meanwhile, I am researching and may end up going to Duke if I have to.  Thank you for the valuable info - greatly appreciate it.
Trinity  

[jmjm530]

You don't mention when your Peg was reduced, but weekly viral load tests until UND might be prudent to determine whether or not the reduced Peg is affecting your viral decline. As you probably know, reducing the Peg should be avoided if at all possible to give you the best chance of SVR. Related, your ANC of 600 is not all that low by the standards many liver specialists use. For example, my ANC dropped to 320 and I still remained on full Peg and that was without the helper drug Neupogen. Recent studies show that treament induced low ANC does not correlate with increased risk of infection as previously thought. My advice if your doctor won't put you back on full-dose Peg is to seek a second opinion from a liver specialist (hepatologist) who treats large groups of HCV patients. You want to get UND ASAP and full-dose will only help.

-- Jim

[Trinity4]

Thanks for your input Hector, NYGirl and Proactive.  I am working very agressively on getting the helper drugs.  I will keep my fingers crossed and hope I get a 2 log drop by next month.  Thank you again for all the wonderful information.  Pro, where in the world do you live?  Are you up there in Alaska near Meki?  Ha
Trinity

[Proactive]

"Viral load only really matters in the fact that you MUST have a two log drop by week 12 and you MUST be UND by week 24." True in the definition of the soc treatment, but there are a number of studies pointing to the relevance and possible svr predictive value of vl decline slope. As Hector mentioned, Trinity is responding to treatment and it's early in the game, but 8 week vl results should be looked at closely for any treatment tweaking. Get those helper drugs and get back on full dose if at all possible
Pro
(can you believe it, friggen snowing here!)

[nygirl7]

Trinity
Hector has it. The viral load only really matters in the fact that you MUST have a two log drop by week 12 and you MUST be UND by week 24.  However, if you ARE still detectible at week 12...you really surely might need to extend treatment until week 72 depending on how close you are.

If you google up the Berg Study and the Sanchez Tapias study it will explain to you just why it's so important for people to be UND at week 4 - that is a key indicator of your chances of getting SVR.  After that for every week it goes downhill.

For example I had a fantastic drop by week 4 all the way down to 411. When I was tested at week 12 it was 419 (same thing). So although I had the requisite 2 log drop.....because I still had detectible viral load at week 12.....doing 72 weeks gave me a MUCH better chance of NOT relapsing (from about a half down to a third, huge numbers).

So I did the 72.  I've been SVr for 16 months and UND for almost what 3 years now altogether. It's not fun but considering the chance is 50/50 to start...giving yourself the extra chance is a big deal.

Sorry I don't remember what week you are or your stats either.........I was never good at that and right now i'm sick so I can't think!

[HectorSF]

Trinity,

I just used an online tool to figure out your VL drop.
1,290,000 to 100,000 = -1.11 log.

You can find the tool at the clinical care options website.
(You just need to create an account to access this excellent site with the latest reseach papers and studies on HCV).

http://www.clinicalcareoptions.com/hepatitis/resources/tool%20download.aspx

HCV RNA Monitoring - An Interactive Decision Support Tool

This interactive tool tracks a patient’s progress on therapy by calculating and graphically representing changes in HCV RNA over time. The tool also generates key patient evaluation dates and interprets the patient progress by providing definitions for endpoints of response and by reporting when a patient has reached these treatment goals. The tool has the capability to save patient data on the user’s own computer, making it available for editing upon subsequent uses.


Hector

[HectorSF]

Thanks for the update Trinity.

1,290,000 to 100,000 at 6 weeks. Looks like more than a 1 log drop. Looks like you are responding to treatment. Excellent!
So by week 12 for want to be down at least 2 log (< 12,900) and hopefully you will be undetectable (UND) by then.

Remember the important points about VL are:
* How your VL responds to tx determines your chances of achieving SVR.
* In order to achieve SVR you have to reach UND and stay UND for the duration of treatment and after treatment to clear the virus.

Where you tested at 8 weeks? Are you past 8 weeks yet? I forget, sorry. It would be nice to see VL at 8 weeks for additional reduction of your VL before week 12.

Trinity, your doctor is going to test at week 12 correct? That is the critical one. You don't want to miss week 12 no matter what!!! As long as you get your week 12 VL you will know were you stand. I'm hoping you are UND by then!

Keep up the good work. It's working!
Hector