Testing, Testing, Testing

I went in today for a retest of my Neutrophil count. This endless testing is beginning to wear. Since the start of the Study, I have been in for Baseline testing and week 2,4,6 and 8 testing each of which involved drawing 10-16 vial of blood. I have also been called back for retests my Neutrophil and Hemogloblin levels after the last 3 tests. I have been to visit these guys 8 times in 9 weeks for various testing.

I am extremely lucky that I live in San Francisco. At least one of the test subjects lives in Eureka, which is a good 5-6 hour drive from the Bay Area. I can only hope they have not had to have any retesting, or if they have, that Roche has contracted with a lab in that general area to do the retests. If I had to drive 5 hours to have them draw 2 vials of blood to verify a borderline result, it would piss me off no end.

I know that they are doing this because the fact that they are testing an experimental drug makes them extremely cautious. The various levels that are causing them concern are levels above those they accept during standard treatment. One of the individuals in our support group had their Hemoglobin drop into the low 9’s during their treatment. In my case if it drops below 10 (and it has been testing that borderline for a few weeks now) they will reduce my Ribavirin dosage to try to forestall any further drop in the level.
There attention and care are appreciated but it feels like the Hepatology Dept. of California Pacific Medical Center is becoming a second home and while everyone is very supportive, positive and friendly, there are better places to be than in a waiting room, an examination room or a blood drawing site.

And just to make sure that I don’t present myself as not being self-serving – we don’t get paid for the retesting visits only for the scheduled testing visits. It’s not the money per se, but it is the fact that even for someone as conveniently located as myself, any visit requires a minimum of 2 hours time and generally 3 for the long visits. You have to get there, be there and get back home or to work and all that takes time and energy. But, hey I’m not going to go on strike and the experiment is working, at least on me.

The major worry is that if the low levels of Neutrophils are confirmed, they will remove me from the experimental drug, the RO5024048 aka RG7128. That’s the stuff that has been working and it is definitely the stuff I want to continue. Go ahead and reduce the Interferon or Ribavirin dose, just don’t take away my Attila the Hun drug. I want to have those ruthless little molecules hunting and killing virus for as long as I possibly can.

It boils down to spending a couple of hours having 2 vials of blood taken so they can recheck blood component levels to determine whether or not I get to keep getting “the good stuff” as long as I possibly can.

No pressure in that eh?