I can get all my results, except for the VL. I can use rescue drugs etc. I dont know the blood levels as far as their cut off points for starting procrit etc. Im sure It will be as I get to a danger level or I cant stand it. I ordered my private PCR test thru my regular doc who is an internist , who is the one that discovered the HCV in me. No, you cant just go to Quest without a docs order . I think there are places around that you can get any lab test done without a script but I dont know who they are, Definitely not quest or Labcorp.
I've seen forum members discuss a number of different trials, so you might do a search specific to the trial you are on. I'm not aware of the details of the trials, how well they keep you informed, the levels when the decide to administer rescue drugs, if you can use anything to treat rashes, or do your own CBC or PCR test, etc. etc. This should have been spelled out by the trial administrator at the beginning.
Some of the forum members in trials have discussed doing their own tests at their own expense. The only problem would be if the doctor has to order the Heptimax test. I don't know if you can just go into Quest and request it yourself. Really not sure how this works???
Since I am in a a trial, yes, they are watching it closely but wont let me in on it. Im wondering if that is the same test they did the RT PCR <43. I could have asked the girl who drew my blood I guess I wasnt thinking. I should have made sure I was privately doing the exact test they were. Not sure what I could do or should do if there is a discrepancy. Of course If they let me continue all I will know is that their test showed under 1000 to undetected.. i will then have to completely rely on the test I did for my results for any decisions I make as wether to continue. Has anyone had to confront study docs and let them know they had their VL tests done privately? They must know a lot of us have this done on our own.
thank you so much for your reply. I will go to your page and look
If below 43 but above zero it will say 'Detected' if it's zero it will say 'Undetected' See the examples on my page. There may be a test for a number lower than 43 but it may be a distinction of little difference. It may be as problematic to rid oneself of a number <43 as one <5. When the number is <43 but greater than zero it will say "RNA Detected" If it is zero it reads "RNA Not Detected" Then at the EOT we still wait six months to confirm that Not Detected result. :) Best of Luck
I believe the RT PCR test is the standard test performed, particularly for the 4 week test. I've requested and the doctor agreed to do the more specific Heptimax test at 12 weeks. I wasn't aware of the different sensitivites of these test until learning it on this forum. If you are in a trial, I would think they would be watching this closely. The test at 12 weeks is important since this is often when the decision is made to continue with SOC or not.