Saturday, April 14, 2007

Friday the 13th

It's a good thing I've always considered Friday the 13th a lucky day. It was a long day yesterday but we got everything done and now I just have to wait and make sure all my tests come back fine. My nurse told me that it will be about 2 weeks so they will call me either the last week in April or the first week in May and then I just have to go in and get started.

I got a call the day before to say I had to fast for 4 hours before my appointment at 10AM so I didn't have anything when I got up in the morning. With rush hour and all the road construction going on everywhere all over Vancouver (getting ready for the Olympics in 2010) I left at 8AM and pulled into the underground parking at the hospital at 9:48.

I met my nurses, got the rundown of what we had to get done and then they left me with the 20 page informed consent form to read and a pad of paper to jot down questions. My only questions were if 1) If I ended up in group A which got only interferon and ribavirin and a placebo for 24 weeks, would the rollover into the vertex drug be at the end of the 24 weeks or the end of the 48 weeks. and 2) if the drugs gave me anemia again as I assume they will as that is a side effect of both ribavirin and telaprevir, can we just lower the dosage instead of being taken off the drug until my counts improve.

She said that on question 2 she was pretty sure that they would lower the dosage because they have learned you are better off to have a lower dose and stay on ribavirin than go off the drug and then back on again and on the first question she thought it was at the 26 week mark when they meet to tell you which group you were in and tell you what's happening with your results so far. So I could end up in any of the 4 groups and each gets the telaprevir at one point or another. It is Pegasys and Copegus that we'll be getting.

I had an ECG, multiple vials of blood taken, a physical exam, urine test, eye examination, weight and height, blood pressure, signed and initialed 20 pages of consent and was there for about 3 hours. I left and went looking for food and drink!! Then I hit the freeway back to work and got back around 3PM.

I was happy to read the Prove 1 Clinical Trial results. My nurse was very positive about the drug too. It's going to mean lots of trips in to the hospital for the first few months but that's fine. I need to increase my fluid intake now and get used to drinking water. The nurse said to get some crystal light and mix that in with it and see if giving it a flavor helps. Plus she said if I want a cup of coffee in the morning I can have one. The Hepatitis clinic has moved into a big new facility still attached to the hospital with all new everything so it's really nice and I liked all the nurses that I've met so far. They seem very informed and she was happy to hear about the online support network the forum provides whereas last time they told me to stay off the internet as most of the information out there was wrong. So all in all I feel very positive about all of this and my only worry now is how the drugs will affect me and what group I end up in and will I be able to stay on top of the fluids I need.

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