Need baseline VL after 6th shot!!!!

[Trinity4]

For all who remember my post several days ago regarding my doctor's visit at which time I was told the lab only indicated my vl was above 750,000 and this was supposed to be my baseline PCR.  I took my 6th shot last night and got a call from my doc yesterday afternoon stating I needed to go back for another HCV RNA PCR QUANT because the lab could not provide an accurate count.  They are never going to have an accurate vl to compare to at 12wk because I've had 6 shots!!!  I told the nurse this and she said "oh, that's ok, we can use the one from last October."
I said well I guess it has to be ok, because we can't go back can we.  This kind of thing drives me nuts but totally out of my hands so I'm not going to stress about it.  I am going to call them back on Monday and suggest we use a different lab.  I regard the baseline as very important and we all know why.  My doc doesn't believe in 4 wk PCR's for geno 1's anyway nor is he an advocate of 72 wk tx so I will be changing docs that being one of many reasons.  Just very frustrating but this too shall pass.  
Trinty

[alagirl]

I was in the hospital so much on tx that just about all of my lab timelines went out the window.  But I did get my first viral load at the standard time, or at least what was standard last October when I started tx.  Anyway, since my first VL after starting tx was UND or Negative, I didn't worry so much about doing the others at exactly the right week, I just had them pull them for me whenever I was in the hospital, usually every month or so.  Most docs won't pull them that often though I don't guess.  I've been pretty lucky with my doctors and my health insurance agency also in terms of my treatment given how expensive the complications have been.

[zazza]

Nobody knows what his/her magic number is, so why cut short on the 72?

[GSDgirl]

jeez, my doc only did the vl test at 3 months which was und.  He was also not up to the latest which I am finding out more & more reading these forums.

Denise

[Bigfloyd]

As long as your VL is going down, then everything should be considered on track. If at 12 weeks you are UND, then your doc would probably recommend going 48. If still detectable, but clearly still going down, then he/she would probably extend treatment and base the total on when you actually reach UND. For me that was at week 19, so we are extending 48 weeks past UND for a total of 67 weeks. There is no magic in the 72 number.

[Trinity4]

October was 1,290,000 so I would assume that is accurate.  It is better than nothing but vl does fluctuate so hypothetically let's say it was 5,000,000 on 4/25 when baseline was done.  This doc doesn't believe in 4 wks PCR for geno 1's so he does the 12 wk and I have dropped 2 logs but that puts me at 50,000 but is not a 2 log drop using 1,290,000 as a starting point.  This is what angers me so much.  It literally skews the numbers and eliminates any predictability factors.  However, when I get retested on Thursday and if results show a huge drop like down in the low thousands I guess I can't really say too much.  On the flip side, my vl could have been just a tad over the 750,000 so who's to say at this point. I've talked to him about studies and statistics and a course of action if this or that happens and it's like he views me as challenging his intelligence.  I probably should challenge him considering his lack of progressive thinking but I'm stuck between a rock and hard spot right now.   I'm going to hang tough another few weeks while I search for hepatologist.  None in immediate area so probably will have to travel a lot but that's ok because sx haven't been bad at all and I'm tolerating things pretty well.  Consider myself very fortunate in that area.  
Thanks
Trinity

[comeagain]

So sorry to here this. If you cant get a prober baseline vl In my opinion your doc has  sabotaget yout tx stategi.

Is it not possible to sue !!!

[Trish77]

Was the one from last October an accurate amount?  It's better than nothing I suppose but viral load fluctuates.  I'm wondering what happens if you call the lab and ask them if they are able to use the same sample but a different test on it and what would be required in doing that?  Even just as a general question... "I was wondering if you are able to run more than one test on the same sample .. say, use a test with a higher upper limit?"  Can't hurt, might help.

I'm sorry for your frustration.  If you can't find another doc soon enough, then perhaps with your current doc you can lay out the kind of tests you want done for the duration of your treatment and see if you can get his agreement.  It is no fun to fight your way during treatment with your doc.  

Your doc sounds like he hasn't put much effort into keeping up with current treatment approaches...which is a considerable pity, considering he treats alot of persons with HCV.  

Good luck with this.

Trish

[copyman]

actually i think the 4 week pcr is the most important. shame more docs are not up to date on the importance of 4 week VL  test.  tell your doc to get up to date with the latest protocols !!!!