I got a call from Hershey. But it wasn't about the blood work that I had done yesterday....they didn't have that back from my local Hospital yet when they called.
Sandy, my research nurse, called and told me that she was contacted by Roche and told to take me off of the research drug. They didn't tell her why, they just told her to have me continue on with the Pegasys and the Ribavirin.
Out of the 11 people at Hershey, 2 of us have been removed from the trial drug and Hershey has yet to find out why. It could be something to do with our 12 week blood work that was taken a week ago. My mind is spinning.....it could be a lot of reasons.
On Monday I go back to Hershey and I take all of my meds with me to be resupplied with new Ribavirin and Pegasys.
Part of me is sort of happy because I know that the trial drug has played hell on me. It's been 5 days since Hershey had me stop the trial drug due to my blood levels dropping and I'm finally feeling very good this morning. I was really dreading my having to restart the trial drug anyway.
There is a part of me that's worried also.....will I continue to kick my little dragons ass on just the Ribivirin and Pegasys? Is there something bad in my 12 week blood work that caused them to stop the trial drug? Did something happen to someone somewhere else while on the same dosage that I'm on?
I have so many questions now....some of them will be answered on Monday, but I have the feeling that most will not ever be answered.
Any way that you look at it, the trial drug is over for me and I finally feel Ducky this morning!
I hope this has turned out to be good news for me. I have to remember that I did have 12 weeks of a treatment that most people do not have of a powerful drug that kicked this virus' ass and made me undetectable at week 2. Made me feel like hell warmed over....but it still did the trick...I have to hope that it did enough.
Besides, standard treatment has worked for so many people that I know....
For this moment, for this morning, I think I'll just celebrate finally feeling Ducky!
3 comments:
You hit the dragon the hardest at the time it matters most - at the beginning. I'm convinced you were on the max dose of trial drug and Peg. Maybe Roche realized that combo. was a little too much for most people. I'm wishing you the best for the rest of your treatment.
I so glad the fickle duck has returned. Roche is hard to do business with. I assume that they pulled you because you don't tolerate the study drug. They are convinced that the pattern you are experiencing will continue as time goes by so it does you no good to continue on it. The chances of a viral breakthrough are slim given that the tend to occur before one's VL hits UND. This might be a blessing in disguise...Hugs and best to Jimmy
I hope you both are right. It makes sense anyway.
I would still like to know why though. Roche surprised even my Doctor who is involved in Trials all the time.
I can't help but wonder about the person at Hershey who was taken off also. I wonder if they where in as much trouble as I was. Maybe I'll find out more on Monday....
Thank you both.
((Hugs))
Love
Laurie
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